case study nhs

Guide to case studies

What is a case study.

A case study is an in depth focussed study of a person, group, or situation that has been studied over time within its real-life context.

There are different types of case study:

• Illustrative case studies describe an unfamiliar situation in order to help people understand it.
• Critical instance case studies focus on a unique case, without a generalised purpose.
• Exploratory case studies are preliminary projects to help guide a future, larger-scale project. They aim to identify research questions and possible research approaches.

We are often looking to develop patient stories as case studies and these will use qualitative methods such as interviews to find specific details and descriptions of how your subject is affected.

Patient stories are illustrative or critical instance case studies. For example, an illustrative case study might focus on a patient with an eating disorder to provide a subjective view to better help trainee nutritionists understand the illness.  A critical instance case study might focus on a patient with a very rare or uniquely complex condition or how a single patient is affected by an injury.

How do you do a case study?

1. get prepared.

• Be very clear about the purpose of the case study, why you are doing it and what it will be used for?
• Think about the questions you want to answer? What are your research or evaluation questions?
• Determine what kind of case study will best suit your needs? Illustrative, Critical Instance or Exploratory?
• Define the subject of study – is it an individual, a small group of people, or a specific situation?
• Determine if you need ethical approval to conduct this case study – you may be asked to prove that the case study will do no harm to its participant(s).

2. Get designing!

• Finalise your research or evaluation questions – i.e. what you want to know at the end of the study. Limit these to a manageable number – no more than 4 or 5.
• Think about where you will find the information you need to answer your questions.  Interviewing research subjects and/ or observing will likely be the central methods of your case study, but do you need to look to additional data sources as well? For example, desk research or evidence/literature reviewing, interviewing experts, other fieldwork and so on.
• Create a plan outlining how you will gather the information you need to answer your research or evaluation questions. Include a timeframe and be clear that you have the resources and equipment to carry out the work. Depending on the nature of the case study or the topic being studied a case study may require several meetings/interviews over a period of many months, or it might need just a one off interview. What does yours need?
• Decide on the exact subject of the study. Is this a specific person or a small group of people? If yes, plan how you will get in touch with them and invite them to take part in the case study. How flexible can you be in terms of time and travel? Does this limit your access to potential participants?
• Design interview questions that are open and will enable the participant to provide in-depth answers. Avoid questions that can be answered with a single yes or no and make sure the questions are flexible and allow the participant to talk openly and freely.

3. Get recruiting!

• You may have a specific individual in mind, or specific criteria. You will need to invite people to participate and make very clear that they are able to withdraw at any point.
• You will need consent from the participants. Make sure the purpose of the case study, why you are doing it and what it will be used, the methods and time frames are extremely clear to the potential participants. You will need written consent that demonstrates that the participant understands this. Additionally, if you intend to digitally record an interview or take notes, make sure you have permission from the participants’ first.
• If your central method is observation, this will be open observation – the participant must be aware of your presence and agreed to it – you are not allowed to observe without the participants’ permission!

4. Get conducting!

• Interviewing – Agree a mutually suitable time and venue for the case study interview. This may be a one off or the first of many over several months. Make sure the participant is in an environment they are comfortable and able to talk in. Equally important, however is that the environment is safe for you and is conducive to conducting a case study interview – i.e.  If it is a private space, are you safe? If it is a public space make sure it is not too noisy or likely to be affected by interruptions.
• Decide what is the best method of recording the interview information – digital recording is less intrusive and you can engage better in the conversation, than if you attempt to just take notes. Taking notes can mean that your concentration is focused on the writing rather than the listening and you can miss vital points. It can also be off-putting for the participant if there is no eye contact because you are scribing throughout the conversation. However, some participants will not like to be digitally recorded – so it is best to discuss this with them first. If you are digitally recording always test the equipment first. Even if you are digitally recording you will still need to take notes on key points, or things that you would like to investigate further, questions that arise or points at which you don’t want to interrupt the conversation or anything that will not be captured by the recording, such as body language or other observations.
• Depending on the total length of your case study, you might hold a one off interview, interview weekly, once every month or two, or just once or twice a year. Begin with the interview questions you prepared in the preparation and design phases, then iterate to dig deeper into the topics. Ask about experience and meaning — ask the participant what it’s like to go through the experience you’re studying and what the experience means to them. Later interviews are an opportunity to ask questions that fill gaps in your knowledge, or that are particularly relevant to the development of the case study or in answering your questions.
• Observing – recording observation can be done manually – i.e. taking notes – or digitally via a camcorder or similar. It is important to capture detail about the subject/participant and their interactions with others and the environment, their behaviour and other context an detail that is relevant to your questions.

5. Get analysing!

• Write up your notes or transcribe (Interviews), make notes (video) from your digital recording. Remember that if you are transcribing it is important to include pauses, laughter and other descriptive sounds and commentary on tone and intonation to better convey the story. Include the contextual information / the external environment and other observations that are important. Such as when and where the interview took place (you will not necessarily make this public) and any issues that arose such as interruptions that affected the interview or if there were multiple interviews anything of significance that happened in the periods between interviews.
• Thematically code (look for themes) and look for key parts of the interviews that will answer your original questions. Also be very aware that the may be new or unexpected information that has come through the process that is very important or interesting.
• Arrange the notes or transcriptions from the interviews and, or observations into a case study. It is not likely that you will be able to use the transcriptions without reorganising them, but if you are rewriting the story in your own words, be careful not to lose the meaning and language that reflects the participant.

6. Get sign off!

• Once you have drafted your case study make sure the participant(s) have sight of it and an opportunity to say whether you have captured their story and are representing it/them as they would like.

7. Get disseminating!

• More information about disseminating evaluations and case studies can be found on the  Evaluation Toolkit site .
• Remember case studies are not designed for large group studies or statistical analysis and do not aim to answer a research question definitively.
• Do background/context research where possible.
• Establishing trust with participants is crucial and can result in less inhibited behaviour. Observing people in their home, workplaces, or other “natural” environments may be more effective than bringing them to a laboratory or office.
• Be aware that if you are observing it is likely that because subjects know they are being studied, their behaviour will change.
• Take notes -Extensive notes during observation will be vital.
• Take notes even if you are digitally recoding an interview to capture your own thinking, points to follow up on or observations.
• In some case studies, it may be appropriate to ask the participant to record experiences in a diary – especially if there are periods between your interviews or observations that you wish to capture data on.
• Stay rigorous. A case study may feel less data-driven than a medical trial or a scientific experiment, but attention to rigor and valid methodology remains vital.
• When reviewing your notes, discard possible conclusions that do not have detailed observation or evidence backing them up.
• A case study might reveal new and unexpected results, and lead to research taking new directions.
• A case study cannot be generalised to fit a whole population.
• Since you aren’t conducting a statistical analysis, you do not need to recruit a diverse cross-section of society. You should be aware of any biases in your small sample, and make them clear in your report, but they do not invalidate your research.
• Useful resource: ‘Case Study Research: Design and Methods’, Robert K Yin, SAGE publications 2013.

Case studies

Find inspiration for your own evaluation with these real life examples

Guidance from a range of organisations for in-depth advice

Services and support

Knowledgeable organisations who may be able to help you

Training resources

Want to learn more? Our training resources are a good place to start

The Evaluation and Evidence toolkits go hand in hand. Using and generating evidence to inform decision making is vital to improving services and people’s lives.

The toolkits have been developed by the NHS Bristol, North Somerset and South Gloucestershire Integrated Care Board (BNSSG ICB), the National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West) and Health Innovation West of England .

We use cookies to give you the best experience of our website. By browsing you agree to our use of cookies.

Cookies on the NHS Long Term Plan site

We’ve put some small files called cookies on your device to make our site work.

We’d also like to use analytics cookies. These send information about how our site is used to a service called Google Analytics. We use this information to improve our site.

Let us know if this is OK. We’ll use a cookie to save your choice. You can  read more about our cookies before you choose.

Change my preferences I'm OK with analytics cookies

Case studies

The NHS Long Term Plan will make sure the NHS is fit for the future.

Find out through our case studies and films about how the NHS is already making significant changes and developing to better meet the needs of patients and their families through every stage of life.

View case studies by topic:

• Cardiovascular
• Integrated care
• Learning disabilities
• Mental health
• Personalised care
• Primary care
• Urgent and emergency care

View case studies by life stage:

• Starting well
• Better care for major health conditions
• Ageing well

Case studies

Population health management

Using population health data to underpin transformation change

Identifying and supporting high needs groups in Cheshire and Merseyside through detailed data analysis.

23 November 2023

Driving wellbeing in Merseyside through non-clinical but NHS-run services

Offering socially focused interventions to benefit an entire local community, not just patients of the trust.

A population health management-based allocation of funding in Dorset

Using data to decide how a tranche of national funding should be shared between primary care networks.

Creating community hubs to support local populations

Providing ‘one-stop shops’ for access to voluntary sector support in communities in Cornwall and the Isles of Scilly.

24 November 2023

Mental health

Scalable innovation for mental health care and support.

NHS and public health services in Shropshire worked in partnership to provide early mental health intervention and rapid-access pathways.

6 April 2023

Embedding mental health expertise into housing teams

Placing a mental health nurse in a housing team has ensured the right mental health support is in place and aligned with housing need.

Partnership working in Doncaster to support children and young people’s mental health

A multi-agency approach has led to reduced delays and improved access to help and support for children and young people in Doncaster.

Children and young people’s social prescribing service

Reducing the number of young people referred to secondary mental health care through social prescribing within primary care.

12 May 2022

NHS 111 mental health triage service

Enabling people in Hampshire, Southampton and Isle of Wight to get mental health support before a problem becomes a crisis.

13 January 2022

Population health

Building a supportive and empowering first 1,000 days of life.

Working collaboratively to support early parent-infant relationships across the Birmingham and Solihull Integrated Care System.

23 June 2022

Creating a smoke-free South Yorkshire and Bassetlaw Integrated Care System

An innovative smoking cessation programme in hospitals has made the treatment of tobacco addiction part of the routine care offered.

Improving population health outcomes with integrated data sets

Developing a population health and care platform helped identify and target underserved populations using an integrated data set.

Growing and creating health improvement within local health and care systems

Improving the conditions for place-based health to flourish through a co-creation approach to health and wellbeing.

Provider collaboration

Improving outcomes for premature babies in the west and south west of england.

A unique perinatal care bundle has improved the outcomes for premature babies across the west and south west of England.

21 April 2022

Reducing paediatric surgery waiting lists

Bath and North East Somerset, Swindon and Wiltshire worked together to reduce waiting times that children were facing for surgery.

Collaboration between primary care and community services to support care for older people

Primary care and community services are working together in North Yorkshire to appoint community posts to support dementia and end-of-life care.

Sheffield primary care mental health transformation

A collaboration between primary care, the mental health trust and the voluntary sector has helped to reduce mental health inequalities in Sheffield.

Community capacity

Supporting people affected by frailty in hull and east riding.

A community frailty pathway has brought together consultants, GPs, advanced nurse practitioners, social workers, pharmacists, other specialists, and the voluntary sector, to work as a single system supporting vulnerable patients.

11 January 2022

Urgent community response across Mid and South Essex

A new urgent community response team is providing a single integrated service that responds to people experiencing an acute medical crisis in their own home.

Reducing conveyances of older patients in South Warwickshire

How a virtual ward has resulted in 48 per cent of conveyances for over 80s being avoided.

Diverting children from unnecessary hospital attendances in York

A community health village in York is delivering services on behalf of busy providers and diverting children from unnecessary hospital attendances.

Elective recovery

Tackling long waiting lists and health inequalities in coventry and warwickshire.

How Coventry and Warwickshire is making inroads on the growing numbers of patients waiting for more than 18 weeks for treatment.

Expanding capacity and creating green pathways at Croydon Health Services NHS Trust

How Croydon has been able to continue with clinically prioritised elective work and offer assistance to other south-west London trusts.

Working as a system to recover the backlog: Harrogate and District NHS Foundation Trust

How one of North Yorkshire’s leading hospitals is working with partners to tackle the backlog of care.

Restoring elective work and looking to the future at East Sussex NHS Healthcare Trust

How East Sussex has been able to restore elective services by managing its case mix, increasing day-case procedures.

Acting early to restart elective work at Bolton NHS Foundation Trust

How Bolton and system partners in Greater Manchester approached restarting elective services.

More case studies

Innovation through robotic-assisted operations to address health inequities.

Robotic-assisted surgery is improving access to the best possible care across the Black Country and helping to reduce health inequities.

18 January 2024

Patient-initiated follow up in Leicester, Nottinghamshire, Norfolk and Norwich

Three trusts have substantially reduced unnecessary outpatients appointments, overdue referrals and waiting lists through patient-initiated follow up.

10 November 2023

Internet explorer is no longer supported

We have detected that you are using Internet Explorer to visit this website. Internet Explorer is now being phased out by Microsoft. As a result, NHS Digital no longer supports any version of Internet Explorer for our web-based products, as it involves considerable extra effort and expense, which cannot be justified from public funds. Some features on this site will not work. You should use a modern browser such as Edge, Chrome, Firefox, or Safari. If you have difficulty installing or accessing a different browser, contact your IT support team.

Case studies

Covering lessons learned and personal experiences, these case studies provide an insight into the implementation, benefits and use of the NHS e-Referral Service (e-RS) across primary and secondary care.

Going 'e-referrals only' in a mental health trust

More than 90% of GP referrals into South West London and St. George's Mental Health NHS Trust are now sent using the NHS e-Referral Service.

Gloucestershire Hospitals NHS Foundation Trust

This case study focuses on the successful implementation of the NHS e-Referral Service (e-RS) advice and guidance functionality at the Gloucestershire Hospitals NHS Foundation Trust. The trust is one of the largest providers of e-RS advice and guidance services in England.

Somerset NHS Foundation Trust: advice and guidance case study

Paediatrics was the first speciality to open e-RS advice and guidance in 2009, followed by an expansion across a range of specialities. The majority of services provide a 48 hour turnaround for advice and guidance.

York Teaching Hospital NHS Foundation Trust advice and guidance case study

York e-RS advice and guidance services are consultant-led, with the majority of consultants being based in York Hospital, but some providing advice and guidance from the nearby Scarborough General Hospital.

Imperial College Integration of clinical referral information

Imperial College Healthcare partnered with e-RS to maximise the full range of paper switch off benefits to reduce administrative costs and achieve quicker patient care through API integration.

Cutting waiting times using the e-RS Advice and Guidance channel

Northumbria Healthcare NHS Foundation Trust gastroenterology team reduced its patient waiting times by using the e-Referral Service (e-RS) to give gastroenterology advice and guidance to GPs

Earlier case studies

From 2018 we also published a series of primary care and secondary e-RS case studies.  These case studies are still available from the national archive. 

Archived case studies

Archived e-RS case studies which provided an insight into the earlier implementation of NHS e-RS across primary and secondary care.

Last edited: 10 July 2023 11:07 am

The NHS Plan: reducing waiting times and providing high-quality patient care in the UK

Jump to a section.

The initiative

The challenge

The public impact

• Stakeholder engagement Strong
• Political commitment Good
• Public confidence Good
• Clarity of objectives Strong
• Strength of evidence Fair
• Feasibility Good
• Management Strong
• Measurement Strong
• Alignment Fair

Bibliography

The NHS Plan was launched in July 2000 to reform the NHS's operations. The plan was based on a set of ten core principles, which included access to healthcare based on need rather than on the ability to pay, the provision of a comprehensive range of services, and patient-focused care and services. The main objectives of the NHS Plan were to reduce waiting times to new targets, modernise NHS facilities and healthcare equipment, and recruit thousands of healthcare professionals to meet increasing demand on the service. [2] The plan stated that “successful services thrive on their ability to respond to the individual needs of their customers... Services have to be tailor-made not mass-produced, geared to the needs of users not the convenience of producers.” [2]

Public consultation on the NHS Plan found that the top concern among the general public regarding the health service was waiting times, although this was not the main concern of NHS staff (see Alignment below). As a result, reducing waiting times became a central objective for the government. Targets were set to reduce waiting times for both primary and hospital care for outpatients and inpatients. By 2004, the aim was that patients would see a primary care professional within 24 hours and a GP within 48 hours. [2] Maximum waiting times for Accident and Emergency (A&E) were set at 4 hours, with an average waiting time of 75 minutes expected.[2] By 2005, outpatient waiting times were to be reduced from 6 months to 3; maximum waiting times for inpatients were to be reduced from 18 months to 6. By 2008, the target was for all treatments to take place within a maximum waiting time of 3 months, and this period was called the referral-to-treatment (RTT). [2]

In order to reduce waiting times, there were organisational changes and investments in facilities and staff recruitment. NHS Direct was set up as a 24-hour helpline which provides basic advice to callers and helps direct them to the appropriate care providers. [2] A new system for booking hospital appointments was also introduced to allow patients to make appointments in the consultation room for outpatient treatment and operations. [2] These measures were designed to be more efficient, thereby relieving pressure on hospitals and enabling them to provide better quality of care. 

As well as the new operating systems, the NHS Plan pledged to provide more resources and recruit more staff to enable the NHS to meet new waiting time targets. The plan committed to investing in 7,000 extra beds, over 100 new hospitals, 500 new primary care centres, the modernisation of over 3,000 GP premises, 250 new scanners, and modern IT systems. [2] Additionally, there would be an additional 7,500 consultants, 2,000 GPs, 20,000 nurses, 6,500 therapists, and 1,000 more medical school places. This investment in facilities and staff was to provide sufficient resources to reduce waiting times.. [2]

The NHS had failed to stay up-to-date with changing and evolving needs. It faced funding pressures, staff and resource shortages, a lack of national standards, and outdated systems of practice, and needed a more patient-focused model of care with reduced waiting times.

The NHS is immensely important to Britain, not only for the healthcare services that it provides but also for the place it occupies in British society. For the public, the NHS represents values of fairness and inclusion which are not based on a person's income. In 2013, Britons across a range of social backgrounds ranked the NHS first in a survey that asked which British social institutions made participants most proud to be British. [1 ] Despite its centrality to the everyday lives of the public, the NHS failed to stay up-to-date with changing and evolving needs. It faced problems of funding pressures, staff and resource shortages, a lack of national standards, and outdated systems of practice.  

One of the biggest obstacles to NHS success was its underfunding. From 1960 to 2000, increases in healthcare spending in real terms per capita were lower in the UK than other OECD countries: the UK increased its healthcare spending by 3.6 percent, while the OECD average was 5.5 percent. From 1979 to 1997, the increase in healthcare spending averaged 2.9 percent, which varied between less than 0 percent to more than 6 percent in real terms. [2] The result of this underfunding was too few resources and staff to meet the demands of the public. 

Without sufficient staff and resources' there were often long waiting times for treatment, which were a cause for concern among patients. In 1998, over 380,000 patients waited longer than 6 months to access hospital care, and there were 68,000 who waited more than a year. [3] The average waiting time for half of inpatients was 15.2 weeks. [3]  

Additionally, a lack of national standards meant that there were great differences in healthcare standards delivered across the country. [2] Delivering levels of treatment and care came under the purview of the local health authorities, which resulted in a “postcode lottery” in terms of treatment and care. It was observed that the poorest areas often had the worst services and outcomes within the healthcare system. [2]

The NHS was designed to meet the needs of a society with different societal norms and a different burden of diseases. Significant social changes between the 1940s and the early 2000s, such as the emergence and predominance of consumer culture, meant that patients wanted to have more say in their treatment. Modern Britain had outgrown its hierarchical, paternalistic healthcare delivery model. [2] Not only did patients have different expectations but the old system was inefficient. “Old-fashioned demarcations” between the roles and duties of different healthcare professions were considered to be a source of delay. [2] Patient information was not shared between different healthcare staff within the system; for instance, a patient might have to repeat the same information to a GP, nurse, junior doctor, and consultant, as well as to administrative staff. What was needed to serve the best interests of the public was a more patient-focused model of care with reduced waiting times.

The NHS Plan was wide in its scope, and had many targets and objectives to achieve. Between 2000 and 2010, the NHS successfully met its waiting time targets, reducing waiting times across the health service. However, the then-secretary of state for health, Andy Burnham, said in 2009 that “a decade of investment has given the country a capable, resilient and self-confident health service ready for the challenges of a new era. Yet, while we celebrate its progress, it would be wrong to over-claim for the NHS. It has gone from struggling to generally good.” [4]

Waiting times for patients were substantially reduced across the NHS, reaching their lowest level in its history. [4] Data for 2007/8 showed that 87 percent of patients saw their GPs within 48 hours. [5] By 2005, 97 percent of patients were seen in A&E within the desired target of four hours. The figure rose slightly to 97.8 percent by the end of 2009. [5] By the end of 2009, the average waiting time for inpatients had been reduced from over 13 weeks in 1997 to four and a half weeks. Moreover, the 18-week RTT target was met nationally. [4] In 2009, 93 percent of inpatients and 98 percent of outpatients started treatment within 18 weeks. The median wait for inpatients was 8 weeks for inpatients and 5 weeks for outpatients. [5] There were 45,000 patients who waited more than 18 weeks for inpatient admission, a small proportion of the overall numbers. [6]

By December 2009, healthcare spending in the UK had increased and was closer to the EU average. Before the plan was implemented, the UK spent significantly less on healthcare than other OECD countries. [4] For instance in 2000, healthcare spending in the UK was almost 6 percent of GDP while in France and Germany it was almost 10 percent. By 2010, healthcare spending as a percentage of GDP increased to 8.5 percent in the UK, which still lagged behind France and Germany where the figure had risen, albeit less sharply, to 11 percent. [7]

The positive impact of reduced waiting times was discernible through patient responses. In its NHS Plan for 2010-2015, the Department of Health reported that, as of 2009, 91 percent of patients rated their treatment as being “good,'' “very good” or “excellent” while 91 percent were “satisfied” or “very satisfied” with their GP surgeries or health centres. [4]

Despite success in reducing waiting times and increasing positive patient experiences, there were concerns about the consequences of waiting time targets, and there is even evidence to suggest that primary care units and hospitals were consciously “gaming” the system in order to meet targets. [8] For instance, there were reports of patients being kept waiting in ambulances outside A&E until a 4-hour treatment time was assured. [8] Another concern with targets was highlighted in a British Medical Association (BMA) survey in 2005. It found that “82 percent of A&E staff thought there were possible threats to the safety of patients due to the adverse effects of the 4-hour target, such as being discharged from A&E prematurely or pressures to treat patients waiting the longest rather than those with the greatest clinical need”. [8] Moreover, trying to meet these targets often put NHS staff under immense pressure, with some healthcare professionals referring to them as “targets and terror”. [5]

In recent years, a combination of issues has seen an increase in waiting times. The NHS is under pressure, with demand for its services rising: admissions to A&E have increased while the number of hospital beds has fallen. [9] The A&E target of a 4-hour treatment for 95 percent of patients has not been met since 2013; between July and September 2017, only 90.1 percent of patients were seen within 4 hours, while in the busiest A&E departments the figure was 85.2 percent. [9] As of late 2018, almost one-fifth of NHS hospital services failed to meet any waiting time targets. [10]

Written by Ella Jordan

Stakeholder engagement

Political commitment

There was clear political commitment to improving and reforming the NHS through the policy measures in the NHS Plan. However, the opposition parties had some reservations about the nature and content of the plan. 

The prime minister, Tony Blair, was determined to implement successful reforms, acknowledging that “For all of us it is a challenge. But it is one we intend to meet.” [2] Commitment to making the plan a success was also demonstrated by the then-secretary of state for health, Alan Milburn, who said that: “Like key stakeholders, the government is committed to the NHS core principles... Together with all those who share our vision, we will work day in and day out to make it happen.” [2]  

However, the leader of the Conservative Party, William Hague, criticised the plan, stating that Labour's pledges were set “so far into the future that [Tony Blair] cannot possibly be held to account on whether they are met or not". [11] The leader of the Liberal Democrats, Charles Kennedy, supported the plan but had reservations about its failure to provide free personal care and basic nursing-home care for long-term patients. [12]

Public confidence

The NHS is a widely supported and admired institution in the eyes of the British public. The plan stated in 2000 that “four-fifths of people today say the NHS is critical to British society and the country must do everything it can to maintain it”. [2] At the same time, the public had become generally dissatisfied with standards in the NHS and many believed the government was responsible.  

In 2000, a poll conducted on behalf of the BMA found that: the number of people satisfied with the NHS had dropped from 72 percent in 1998 to 58 percent in 2000; the percentage of people who were dissatisfied rose from 17 percent to 28 percent; and 94 percent of respondents said that the NHS needed to improve. [13] When asked to choose who was responsible for conditions in the NHS, 51 percent said the previous Conservative government, while 48 percent said the Labour government. [13] NHS managers were also blamed (by 46 percent), as were doctors (although by only 9 percent). [13] It was evident that the public had become increasingly unhappy with the NHS's performance, and hence supported the policy to decrease waiting times because that was their number one concern with the NHS. Alan Milburn noted that “What really struck me is that, for the public, waiting was the thing. They were suffering it and wanted it changed.” [14]

Clarity of objectives

Amongst other targets such as modernising NHS facilities and recruiting more healthcare professionals to meet the increasing demand, the NHS Plan outlined clear, measurable targets for the reduction of waiting times. Targets were set for 2004, 2005 and 2010, and they included:

• By 2004, maximum waiting times in A&E should not exceed 4 hours;
• By 2004, access to primary care professionals, such as pharmacists, will be available within 24 hours, except for GPs with whom an appointment will be available within 48 hours;
• By the end of 2005, maximum waiting times for outpatients should decrease from 6 months to 3 months, with average times of 5 weeks; and
• By the end of 2005, maximum waiting times for inpatients should decrease from 18 months to 6 months, with the average decreasing from 3 months to 7 weeks. [2]

A follow-up plan in 2002 reaffirmed that the maximum waiting time for a hospital operation would drop to 3 months by 2008. [15]

Strength of evidence

Feasibility

To reduce waiting times, there were several important measures to ensure that achieving objectives was feasible. An increased budget for the NHS was made available, as were additional places in educational courses to meet the increasing demand for healthcare staff. 

In 2000, the Labour government dedicated more money towards funding the NHS budget. The government spent GBP54.2 million on the NHS in 2000, but by 2005 the amount was GBP89.6 million and by 2010 it was GBP122 million. This represents an increase of 9.3 percent in 2000 and 5.9 percent in 2005 on previous annual expenditure, while there was a 0.1 percent fall year-on-year in 2010. Healthcare spending as a percentage of GDP rose steadily during the period from 5.5 percent in 2000 to 7 percent in 2005 and 8.2 percent by 2010. [17] In addition to increases in funding, the plan recognised that recruiting more staff was essential for targets to be met. The plan pledged to recruit and train more nurses and medical professionals, [2] and between 1999 and 2004 there was a 21 percent increase in staff. [18]

However, there were also some likely challenges to the implementation of the plan's objectives. Although it was important to recruit more staff, certain members of the BMA felt that even more would be needed than was stated in the plan. Similarly, the perspective of the Royal College of Nursing was that it was important not only to recruit more nurses but also to keep them working in the NHS. [19]  

To ensure that hospitals were working hard to meet waiting time targets, a “delivery unit” within the Prime Minister's Office monitored actual waiting times. [14] Alan Milburn commented that the Department of Health put pressure on departmental civil servants, who in turn pressured hospital trust CEOs to perform and meet targets. [14] Responsibility for meeting targets lay with the local hospital; however, there was pressure from above to make sure they were being met.

Devolution was a key element of the management structure of the NHS Plan, which proposed a system of “earned autonomy”. [2] The central government's role was to “set standards, monitor performance, put in place a proper system of inspection, provide backup to assist modernisation of the service and, where necessary, correct failure”. [2] However, the focus was on providing greater autonomy for doctors and healthcare professionals, giving them more control over decision-making - with the best interests of the patient in mind. [2]  

The day-to-day management of the NHS was devolved to 28 new Strategic Health Authorities, whose role was “to hold to account the local health service, build capacity and support performance improvement”. [15] Local Primary Care Trusts (PCTs) were given more autonomy, and by 2004 they controlled 75 percent of the NHS budget. This allowed PCTs to commission healthcare services from healthcare providers either within the NHS or privately. [15]  

To assist with this work and improve patient services, several new organisations were established. The Modernisation Agency's objective was to spread best practice and “help local clinicians and managers redesign local services around the needs and convenience of patients”. [2] The Commission for Health Improvement was an independent body that inspected and assessed how NHS organisations were performing. The National Institute for Clinical Excellence was established “to ensure growing NHS spending is targeted on the most cost-effective treatments” and that access to medicine and treatment is not based on where a patient lives. [15]  

Measurement

In order to assess whether sufficient progress was being made on reducing waiting times, the Department of Health collected data from “NHS-funded, consultant-led services”. [20] In 2005, the Chief Executive's Report to the NHS published data on waiting times from before the NHS Plan until the present. [18]

Additionally, the Department of Health published annual reports on waiting times. Data was submitted to the Department, which then analysed it before publishing its report. It established a traffic-light measurement system, whose criteria were based on “how well [hospitals] work in partnership with others, and how well the local ‘health economy' as a whole is performing on key shared objectives”. [2] Standards were set nationally, but assessment was done locally and verified by the CHI. “Green” organisations were those that met all national targets and were in the top 25 percent of organisations; “yellow” organisations met most or all targets but were outside the top 25 percent; and “red” organisations were ones that had “poor absolute standards of performance”. [2] The CHI inspected green-rated NHS organisations every four years and red-rated organisations every two years. [15]  

Additionally, different frameworks were introduced to provide a reference for national standards. [2] For instance, the Performance Assessment Framework monitored six areas of NHS performance: “health improvement; fair access to services; effective and appropriate delivery of health care; outcomes from healthcare; efficient use of resources; and high quality experience for patients and carers”. [12]  

There was a general alignment of interest between many of the relevant parties involved in the NHS Plan. However, patients - and subsequently policymakers - were more concerned with waiting times than were healthcare professionals. Patients ranked waiting times as their top concern for the NHS, while NHS staff rated it only 7th - their top concerns were staff and training. [2] [14]   

The government was actively involved in ensuring that the plan was implemented successfully, and they put pressure on civil servants to make sure that hospital CEOs were working to achieve the plan's objectives. Alan Milburn said that “it was [a] relentless focus. The prime minister holding me to account, the delivery unit holding the department to account, me holding the department to account and the department holding chief executives to account - with the NHS knowing that this was the absolute top priority, because people were suffering and dying.” [14]  

Despite their shared interest in improving patient care and outcomes, many clinicians were not fully supportive of targets, as they felt that these imposed restrictions on their professional judgment. [5] Rather than using their clinical expertise to assess which patients should be treated next, waiting times forced clinicians to treat patients in a specific order. Performance management was used to achieve meeting targets, and it involved “establishing a formal, regular and rigorous system of data collection and usage to indicate trends and measure the performance of services”. [21]

Under this system, the pressure to meet waiting time targets was high and it became informally known as “targets and terror” (see also Public Impact above). [5] In order to meet these targets, “gaming” tactics were often employed to misrepresent data and make it appear as though targets were being met. [16] In some instances, the focus became meeting targets rather than the quality of care and treatment. For example, targets put an emphasis on treatment times, outpatient appointments and surgical waiting lists, overlooking diagnostics procedures such as MRI scans. [16]

Similarly, there were many who felt that the NHS Plan was opening the door to the commercialisation and eventual privatisation of the NHS, which was a cause for concern. The distinction made between health providers, such as hospitals, and health purchasers, such as GPs, allowed competition to enter the health service in England, despite the Plan's criticism of internal markets. [14]

[1] The NHS: even more cherished than the monarchy and the army, Sunder Katwala, 14 January 2013, New Statesman,  https://www.newstatesman.com/politics/2013/01/nhs-even-more-cherished-monarchy-and-army

[2] The NHS Plan: A Plan for Investment, A Plan for Reform, The Department of Health, 1 July 2000,  https://webarchive.nationalarchives.gov.uk/20121102184216/  http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4002960

[3] The waiting game: what's happening to hospital waiting times? John Appleby, 3 December 2010, The King's Fund,  https://www.kingsfund.org.uk/blog/2010/12/waiting-game-whats-happening-hospital-waiting-times

[4] NHS 2010-2015: from good to great: preventative, people-centred, productive, The Department of Health, 10 December 2009,  https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/228885/7775.pdf

[5] Have targets improved NHS performance? The King's Fund, Accessed 08 January 2019,  https://www.kingsfund.org.uk/projects/general-election-2010/performance-targets

[6] How much have waiting times reduced? The King's Fund, Accessed 8 January 2019,  https://www.kingsfund.org.uk/projects/general-election-2010/waiting-times

[7] Health spending (indicator), OECD 2019 (Accessed on 8 January 2019),  https://data.oecd.org/healthres/health-spending.htm

[8] The NHS and the NHS Plan: Is the Extra Money Working? A Review of the Evidence in 2006, James Gubb, July 2006, Civitas: Institute for the Study of Civil Society,  http://www.civitas.org.uk/pdf/NHSBriefAug06.pdf

[9] How is the NHS performing? December 2018 quarterly monitoring report, Siva Anandaciva, Joni Jabbal, David Maguire, Deborah Ward and Helen Gilburt, 21 December 2018, The King's Fund,  https://www.kingsfund.org.uk/publications/how-nhs-performing-december-2018#performance

[10] Dozens of NHS trusts fail key targets on waiting times for a year, Jane Dalton, 20 November 2018, The Independent,  https://www.independent.co.uk/news/health/nhs-trusts-waiting-time-targets-hospital-funding-performance-a8643781.html

[11]   Blair unveils NHS blueprint, 27 July 2000, BBC News,  http://news.bbc.co.uk/2/hi/in_depth/health/2000/nhs_reform/852416.stm

[12] Plan should go further: Kennedy, 27 July 2000, BBC News,  http://news.bbc.co.uk/2/hi/uk_news/politics/854318.stm

[13] Dissatisfaction with NHS is rising, 11 December 2000, The Guardian,  https://www.theguardian.com/society/2000/dec/11/health.comment1

[14] How New Labour succeeded with NHS policy, Nicholas Timmins, 13 March 2010, The Financial Times (restricted access),  https://www.ft.com/content/168e1278-2b24-11df-93d8-00144feabdc0

[15] Delivering the NHS Plan: Next steps on investment, next steps on reform, The Department of Health, April 2002,  http://www.nhshistory.net/deliveringthenhsplan.pdf

[16] Why are we waiting? An analysis of waiting times in the NHS, James Gubb, December 2007, Civitas,  http://www.civitas.org.uk/content/files/waitingtimes_jan_08.pdf

[17] NHS funding and expenditure, Rachael Harker, 03 April 2012, House of Commons,  http://www.nhshistory.net/parlymoney.pdf

[18] Chief Executive's Report to the NHS, The Department of Health, December 2005,  https://webarchive.nationalarchives.gov.uk/20080728140415/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4124276

[19] NHS Plan: Reaction, 27 July 2000, BBC News,  http://news.bbc.co.uk/2/hi/in_depth/health/2000/nhs_reform/852930.stm

[20] NHS Referral to Treatment Waiting Times Statistics for England 2010 Annual Report, 2010, The Department of Health,  https://webarchive.nationalarchives.gov.uk/20130104163537/http://www.dh.gov.uk/en/Publicationsandstatistics/Statistics/Performancedataandstatistics/ReferraltoTreatmentstatistics/index.htm

[21] Performance Management, ACT Academy, 17 January 2018, NHS Improvement  https://improvement.nhs.uk/documents/2141/performance-management.pdf

The Public Impact Fundamentals - A framework for successful policy

This case study has been assessed using the Public Impact Fundamentals, a simple framework and practical tool to help you assess your public policies and ensure the three fundamentals - Legitimacy, Policy and Action are embedded in them.

Learn more about the Fundamentals and how you can use them to access your own policies and initiatives.

You may also be interested in...

Mexico City's ProAire programme

Organ donations in iran, legislating to encourage organ donation in israel, gavi, the vaccine alliance, who: delivering insecticide treated nets to control malaria, mobile technologies for health in zambia, how can we help.

Archive for the ‘Case study’ category

Date published: 19th March 2024

Applications open for two Non-Executive Director posts

Ministers are seeking to appoint two new Non-Executive Director (NEDs) to the board of NHS Resolution, one of which will be responsible for Chairing NHS Resolution’s Audit and Risk Committee (ARC). Non-Executive Directors are remunerated at a standard rate of £7,883 per annum, with the …

Read more [Continue reading] Applications open for two Non-Executive Director posts

Date published: 6th March 2024

Experienced actuary appointed as Non-Executive Director at NHS Resolution

NHS Resolution is delighted to announce that Anu Ralhan has been appointed as Non-Executive Director. The appointment has been made by the Secretary of State for Health and Social Care today. Anu has been an independent member of NHS Resolution’s Reserving and Pricing Committee (RPC) since …

Read more [Continue reading] Experienced actuary appointed as Non-Executive Director at NHS Resolution

Date published: 18th September 2023

Fixed Recoverable Costs for Lower Value Clinical Negligence Claims

On 15 September 2023, the Government announced that it will introduce fixed recoverable costs (FRC) and a new streamlined process for clinical negligence claims with a damages value of £1,501 to £25,000 in England and Wales. It is proposed these changes be implemented for claims …

Read more [Continue reading] Fixed Recoverable Costs for Lower Value Clinical Negligence Claims

Date published: 14th September 2023

Emergency Medicine national conference – 9 October

NHS Resolution will be holding an emergency medicine conference on Monday 9 October 2023 at the Royal College of Physicians. The national event, entitled Implementing recommendations: Shared insights to reduce claims in emergency medicine, is to bring together professionals working in emergency departments across England …

Read more [Continue reading] Emergency Medicine national conference – 9 October

Date published: 8th September 2023

New Head of Case Advice appointed to the Practitioner Performance Advice service

NHS Resolution is pleased to announce the appointment of Dr Sarah Coope as Head of Case Advice. The Head of Case Advice is a new, senior role in the Practitioner Performance Advice service, which has been established to further strengthen the efficient and effective delivery …

Read more [Continue reading] New Head of Case Advice appointed to the Practitioner Performance Advice service

Date published: 29th August 2023

Publication of 2023 Claims Scorecards

We have made our 2023 claims scorecards available on our extranet for our members and have supported this with an email on Tuesday 29 August 2023. Our scorecard is a unique, interactive tool in an excel format to assist NHS trusts and their clinical teams …

Read more [Continue reading] Publication of 2023 Claims Scorecards

Date published: 13th July 2023

Case study addition to our team reviews offering

On 12 July, our Practitioner Performance Advice service published its first team reviews case study. This study was designed to explore the team review process and explains why a team review was necessary, how the process unfolded and the outcomes. While not based on a …

Read more [Continue reading] Case study addition to our team reviews offering

Date published: 22nd June 2023

Early Notification case stories

In Advise, resolve and learn Our strategy to 2025, our second strategic priority is to share data and insights as a catalyst for improvement and our third is to collaborate to improve maternity outcomes. Aligned with these aims we have gathered together learning from our …

Read more [Continue reading] Early Notification case stories

Navigate to more results pages

• Next page: ›
• Last page: »
• Awards and accreditation badges

Search our site

• Privacy and cookies
• Terms and conditions
• Accessibility

• Twitter LinkedIn

Case studies

Case study: cheshire and merseyside acute and specialist trusts collaborative.

A deep dive into the Cheshire and Merseyside Acute and Specialist Trusts Collaborative

A guide to supporting your internationally educated workforce

Our latest guide provides practical advice and case studies that board members can implement to address the challenges experienced by the internationally educated workforce.

Case study: Using peer review to strengthen clinical and care professional leadership arrangements within Gloucestershire

A case study exploring how an external peer review, facilitated by the Leading Integration Peer Support programme, created an opportunity for everyone’s voice to be heard at One Gloucestershire ICS

Revolutionise pay. Change lives. How on-demand pay gives NHS staff financial flexibility

This case study by our connect partners, Earnd reveals how on demand pay gives NHS staff financial flexibility.

Neighbourhood Integration Programme

Focusing on 'neighbourhood' level, this project draws together case studies on how more joined-up care has been delivered in four localities.

New models of care in practice

Helping spread learning from vanguards, we share nine case studies of new models of care in practice

Involving governors in large scale change

Stockport NHS Foundation Trust share how they have involved governors in Greater Manchester devolution plans

Refer to pharmacy: dedicated ward pharmacy model

Ward pharmacy model at East Lancashire Hospitals NHS Trust

Pauline Mountain MBE

Pauline shares her experience of being a carer governor at Lincolnshire Parternship NHS FT.

Michelle Wiggins

Michelle shares her experiences of being a public govenror at Lincolnshire Partnership NHS Foundation Trust

Gareth Pritchard

Gareth shares his experience of being a public governor at Robert Jones and Agnes Hunt NHS Foundation Trust

Natalie's story

Natalie shares her experience as a staff governor at Nottinghamshire Healthcare NHS Foundation Trust

Cookie preferences

We use cookies and reporting technology to ensure we offer you the best experience across our website and analyse our traffic. Click 'allow all cookies' if you're happy with this. Alternatively, you can choose the type of cookie you would like to accept by clicking 'manage cookies' below. For more information please see our cookie policy.

Necessary cookies

These cookies help make the website usable by enabling basic functions like page navigation and access to secure areas of the website. The website cannot function properly without these cookies.

Statistics cookies

Statistic cookies help us to understand how visitors are interacting with our website by collecting and reporting information anonymously. This helps us to understand where we can improve functionality on the website to provide visitors with a better experience.

Cookies on this website

We use analytics cookies to collect information about how you use our website. We use this information to make the website work as well as possible and improve our services.

You’ve accepted all analytics cookies. You can change your cookie settings at any time.

• How NSS works

Case studies

Our case studies demonstrate how collaboration has been vital to improving Scotland’s health and wellbeing.

From alleviating pressure on GPs and countering fraud to improving quality in the healthcare built environment and supporting the national COVID-19 response, we’re delivering for Scotland and improving for the future.

Take a look at our case studies to learn more about how collaboration has been vital to improving Scotland’s health and wellbeing – with successes at both a national and local level.

2022 case studies

• NHS Scotland Assure - Equipping the Badenoch and Strathspey Community Hospital (Word doc, 826KB)
• NHS Scotland Assure - NHS Scotland Assure Information Management System (AIMS) (Word doc, 442KB)
• NHS National Services Scotland - Pan Lothian Joint Chronologies (Word doc, 542KB)

2020 case study - COVID-19

Building a COVID-19 testing lab (PDF, 358KB)

2018 case studies

• Colon capsule: transforming the patient experience through technology (PDF, 2.3MB)
• Continence: health improvements through collaborative working (PDF, 1.6 MB)
• Using data to alleviate GP pressures (PDF, 1.49MB)
• Tackling fraudulent exemption claims PDF, 1.4MB)
• Re-thinking decontamination (PDF, 1.43MB)
• Patient-centred transfusion treatment (PDF, 2.2MB)
• Modernising diabetes care in Scotland (PDF, 2.3MB)
• Major trauma in Scotland (PDF, 2.28MB)
• Best solutions for oxygen therapy (PDF, 1.7MB)
• Creating a healthy environment (PDF, 1.16MB)

Find out more

To talk to us more about these case studies, or discuss how we could work with you to in the future, contact us by email at [email protected]

Is this page useful?

• Yes  this page is useful
• No  this page is not useful

Help us improve NSS

Don’t include personal or health identifiable information like your Community Health Index.

To help us improve NSS, we’d like to know more about your visit today. We would like you to complete a short survey. It will take only 2 minutes to complete.

Global Coverage

Building more engaged teams in the NHS

How Gateshead Health NHS Trust improved teamwork and reduced absence

It creates a common language that makes it easier to identify strengths and address weaknesses, so that individuals and teams can perform at their highest level.

The Gateshead Health NHS Trust identified that teamwork was one of their major development areas and introduced Insights Discovery to improve communication and collaboration.

We helped the teams to:

• Understand the behavioural preferences of individuals and how these can sometimes clash to cause conflict
• Identify practical actions to take that would help people with different preferences work better together
• Work together to make a more supportive and engaging team environment

One team worked within a particularly stressful unit and suffered from high levels of stress-related absence. After implementing Insights Discovery and taking real steps to promote its application in the workplace,  absence levels were reduced from 40% to 3%.

This team has since won three national awards.

reduction in absenteeism

It is life changing and the teams that I’ve worked with have a new language.

Joanne Coleman

Safeguarding Strategic Lead, NHS Trust

Share this page:

Let us help your business today. contact us now to start your journey..

• Open access
• Published: 01 April 2024

“They seemed to be like cogs working in different directions”: a longitudinal qualitative study on Long COVID healthcare services in the United Kingdom from a person-centred lens

• Chao Fang 1 ,
• Sarah Akhtar Baz 2 ,
• Laura Sheard 2 &
• J. D. Carpentieri 3  

BMC Health Services Research volume  24 , Article number:  406 ( 2024 ) Cite this article

260 Accesses

5 Altmetric

Metrics details

The COVID-19 pandemic has presented significant challenges to the already over-stretched healthcare system in the United Kingdom (UK). These challenges are particularly pronounced for people living with the novel condition of Long COVID (LC) as they often face persistent and fluctuating symptoms, encountering prolonged uncertainty when seeking medical support. Despite a growing understanding of the healthcare challenges associated with LC, existing qualitative studies have predominantly focused on individual experiences rather than examining the structural aspects of healthcare.

A longitudinal qualitative study with 80 participants and 12 healthcare practitioners was conducted in the UK to explore the healthcare experiences of those with LC. In total, 178 interviews (with attrition) were collected across two rounds, from November 2021 to March 2022, and from June to October 2022.

Embracing a person-centred framework that recognises and nurtures interconnected individual, relational, and existential needs, we investigated healthcare experiences related to LC across primary, secondary, and specialist integrated care. Using this perspective, we identified three overarching themes. Theme 1 addresses the persistent hurdle of accessing primary care as the initial point of contact for LC healthcare; Theme 2 underscores the complexity of navigating secondary care; and Theme 3 encapsulates the distinctive challenges of developing LC integrated care. These themes are interlinked, as people with LC often had to navigate or struggle between the various systems, with practitioners seeking to collaborate across the breadth of their professional responsibilities.

From a person-centred approach, we were able to identify the needs of those affected by lasting LC symptoms and comprehend how health services intricately influence these needs. The focus on healthcare systems also captures the nuanced impact that continuing healthcare struggles can have on people’s identity. As such, our findings provide evidence to inform a more effective and sustainable delivery of person-centred care for people with LC across various healthcare settings and over time.

Peer Review reports

The COVID-19 pandemic has presented significant challenges to healthcare in the United Kingdom (UK). At the peak of the pandemic in 2020–21, the Office for National Statistics (ONS) estimated that over 10% of the UK population suffered from persistent symptoms 12 weeks post-infection [ 1 ]. According to the latest ONS statistics from March 2023, around 1.9 million people (2.9% of the UK population) self-reported Long COVID (LC) symptoms [ 2 ]. These symptoms can encompass respiratory, cognitive and cardiovascular issues. Commonly reported issues include fatigue, breathlessness, brain fog and pain, while others also encounter hair loss, skin rashes and sensory dysfunction [ 3 ]. Managing LC symptoms is often closely connected to its multisystemic and often changing nature, requiring ongoing support for symptom management and recovery [ 4 ]. While understandings of and treatments for LC as a new illness are fast-evolving, healthcare provision in the UK continues to lag [ 5 ]. Extensive literature has painted a troubling picture of fragmented healthcare for LC: people living with LC (PLwLC) often have to do the “hard and heavy work of managing symptoms and accessing care” [ 6 ] and thus face various challenges arising from their disrupted health and identity [ 7 , 8 ].

The UK healthcare system has been scrutinised by waves of PLwLC across different levels2. A scoping review on potential LC pathways [ 9 ] suggests that LC related healthcare has been predominantly offered in primary care, yet accessing it remains a significant hurdle for many [ 10 , 11 ]. Even when admitted into healthcare, they also faced considerable barriers in navigating said systems to obtain more specialised (often secondary) care for their symptoms4,7. To meet the unique needs of PLwLC and to optimise healthcare resources dedicated care pathways have been established across the UK since December 2020 [ 12 ]. These pathways, including Long COVID clinics in England and similar services in Wales, Scotland, and Northern Ireland, aim to offer tailored care that addresses the multifaceted challenges (e.g., physical, mental and social) individuals face during their LC trajectories. However, these pathways are limited due to lacking accessibility and holistic care [ 13 ]. The dilemmas between the needs of PLwLC’s and the constraints of healthcare provision have reflected a “perfect storm” in a “healthcare system which has faced years of austerity, budget caps, increasing waiting times, pressurised services, backlogs, and workface shortages” [ 14 ].

These healthcare dilemmas for LC have so far been captured as experienced by individuals . Drawing upon individual narratives (e.g., both the general public living with PLwLC 4,6,7 and healthcare professionals with LC4 [ 15 ],), current literature has often explored healthcare as a vague (broad) construct, asserting that people with LC were “let down, fought against and negotiated with”6,8,10. In other words, LC healthcare has been primarily examined through subjective feelings and the experiences of individuals. Various theoretical frames have been used to explore both the complexity of dilemmas facing LC healthcare and the potential solutions for these. Researchers have employed lenses such as “candidacy” [ 16 ], “legitimation” [ 17 ], “epistemic injustice”8 and “sick role” [ 18 ] to capture both the challenges and the agency of PLwLC’s interactions with healthcare. While the focus on individual encounters in healthcare is valuable, from a health service research perspective, it is also important to understand barriers and enablers for LC healthcare from a more systematic and structural perspective. As such, these understandings can contribute to more explicitly identifying gaps in care provision, offering evidence to further shape healthcare development for LC in the longer term.

To enhance the understandings of PLwLC’ needs and how these are supported, undermined and overlooked in healthcare systems, we argue that adopting a person-centred lens is valuable. Person-centredness, as both a theoretical and practical framework, has long been a cornerstone of healthcare. It prioritises the individual needs and values of patients throughout their healthcare journey. Research has suggested that developing healthcare provision with a person-centred lens can contribute to improved health outcomes and reduced care expenditure [ 19 , 20 ]. This is particularly important in the UK as the healthcare services are free at the point of delivery and the National Health Service (NHS) is responsible for providing comprehensive healthcare to the whole population across a range of interconnected care settings, including primary, specialist, acute/emergency care and integrated care pathways [ 21 ].

In the context of this universal healthcare, the values of person-centred approaches have been interpreted and implemented in a multitude of ways, aiming to treat patients as a person whose ‘‘choice" and "rights" are holistically and consistently addressed20. This focus of person-centred care also entails an empowering dimension, ensuring patients are equipped with sufficient knowledge and skills, and are confident in managing their own health19, [ 22 ]. Healthcare in the UK thus far has actively sought to promote patients’ individual wishes, dignity and autonomy across all the processes of care planning, treatment and decision-making [ 23 ]. Person-centred needs have also been closely examined in the rich matrix of patients’ family, social, cultural and religious circumstances to support their relational being20,22. Meanwhile, there is also an increasing focus on patients’ existential needs in healthcare settings particularly for those with terminal and chronic illnesses, in response to deeper fears of losing fundamental resilience and meaning due to compounded health-related losses [ 24 ]. More importantly, these individual, relational and existential components of person-centred care are often emphasised not as separated but interconnected entities in healthcare provision21,23. As such, person-centred care presents a holistic and systemic approach to addressing the multifaceted and interconnected needs of people with health conditions throughout their healthcare experiences24.

Despite efforts to integrate person-centred care into the UK healthcare system, persistent gaps, primarily attributed to funding and staff shortages, hinder its implementation, leading to increased waiting times and reliance on self-management or private healthcare. Regional disparities, inequalities, and factors such as racism, age, gender, and cultural differences further obstruct healthcare engagement with patients' multifaceted needs. These challenges to the implementation of person-centred healthcare in the UK have been further exacerbated by the COVID-19 pandemic5. The unprecedented crisis has heavily drained the already over-stretched public health resources, amplifying existing issues such as staff shortages, data sharing, inter-organisational coordination and inequalities14. As a result, enacting person-centred care may become even more complicated in varied healthcare settings [ 25 ]. The COVID-19 pandemic has also presented unique circumstances, confronting the competing agendas of prioritising individual care and public health interests. As such, person-centred care is a useful lens to explore how individual needs are shaped by standardised (and highly pressurised) healthcare structures. This lens can be particularly beneficial for critically understanding healthcare services for people with LC, as living with such novel and persistent symptoms may require both acute care and prolonged support alongside their illness trajectories. Ultimately, we aim to understand not only the quality of health care provision but also to more adequately clarify how LC patients’ needs are supported/undermined in (intersection with) health systems over time. These understandings will help to inform the continuing development of holistic healthcare for LC and other similar chronic or novel health conditions in the UK and internationally.

We conducted a longitudinal qualitative study to understand the evolving needs of PLwLC in the UK and the evolution of healthcare in response to this. The interviews were conducted at two times between 2021–2022, respectively November 2021–March 2022, June–October 2022 (each participant had their two interviews approximately 6 months apart). The findings of the first round of interviews have been previously published10,31.

Research design

Our study was designed to conduct three phases of interviews over 2021–2023, talking to both people living with LC and healthcare practitioners. This article reports upon our findings from the initial two phases which extensively explored healthcare experiences (the third phase, conducted in early 2023, focused on resilience). Our aim in this study was to capture an ongoing picture of LC experiences and healthcare across the UK. We also placed a specific focus on a region in northern England characterised by great levels of deprivation (to as region A to project the confidentiality of our participants). This geographical focus allowed us to further contest social and racial inequalities in healthcare, which were exacerbated during the COVID-19 pandemic [ 26 ]. Our investigation examined experiences and development of LC health services from both cross-sectional and longitudinal perspectives. Cross-sectionally, by combining data from both PLwLC as (potential) health services users and healthcare professionals as services providers, we aimed to gain a fuller understanding of how people with LC are (or not) supported as a ‘person’ in health services at that time19. Longitudinally, we then tracked how person-centred healthcare for LC was developed over time in the fast-evolving context of LC as a social and medical experience.

To better understand provision and experience of LC healthcare across diverse circumstances, we used purposeful sampling to recruit participants with self-identified LC from nationally and regionally representative cohort studies. This approach enabled us to not rely on health records for recruitment, as such not only reaching those within healthcare systems (and thus on health records) but also PLwLC who have not accessed healthcare for a variety of reasons. Focusing on self-identified LC symptoms provided us access to people who have not been formally diagnosed with COVID and LC, whose voices often remain unheard due to early testing limitations and healthcare access issues. Our sampling strategy also expanded our research scope by including PLwLC who may not have a strong online presence or digital literacy, unlike many earlier studies recruiting from self-selecting online groups7,16. This inclusive sampling strategy allowed us to engage with people residing in diverse, often overlooked, social and community settings to explore their healthcare experiences of living with LC10.

Participants living with LC were recruited in two ways. Firstly, 40 participants were recruited from five UK national cohort studies (Fig.  1 ). Specific COVID-19 surveys from these cohort studies identified cohort members who reported COVID-19 related symptoms for over 4 weeks, with a focus on those indicating symptoms for over 8 weeks. Recruitment concluded upon reaching the target of 40 interviews. Secondly, 40 interviews were collected in Region A. A similar recruitment approach was used (Fig.  1 ) , identifying 21 participants, who are parents of children born in a general hospital in Region A between March 2007 and December 2010. The remaining 19 participants were recruited from the wider local community through community workers and snowball sampling, to gain a more diverse demographic sample. Both our national and region-specific recruitment oversampled individuals with greater socioeconomic deprivation and from ethnic minorities to reach people who may be underrepresented in other LC studies. In the first phase of interview collection, we conducted in-depth interviews with 80 socially and ethnically diverse participants across varied age groups, including two participants in the 70–79 age group and their partner in a dyad interview (Table  1 ). 73 participants, including the two with their partner, remained for our second phase of interviews (9% attrition rate). Over the two phases, around 25% of PLwLC recovered, 25% improved but had minor symptoms, and the remaining half continued to experience significant and sometimes worsening symptoms (these are estimates due to some participants that their symptoms intersected with other health conditions).

Participating cohort studies

To enrich our picture of LC health services, particularly from the perspective of providers, we included healthcare and public health professionals in our study. We adopted an inclusive approach, aiming to engage interdisciplinary professionals from different healthcare sections supporting LC (e.g., primary and specialist care). We concentrated on sampling practitioners in the metropolitan region A, including the city and surrounding areas. This strategy allowed us to explore how inequalities, such as poverty and racism, may disproportionally contribute to the healthcare challenges facing PLwLC. We also paid attention to the provision of the LC pathway in Region A, one of longest-running pathways in the UK [ 27 ], particularly within the limited timeframe of our study. Using our team’s existing connections as well as snowballing, 12 practitioners were recruited from 7 different care settings in the first phase of interviews (Table  2 ). In phase 2, we talked to 13 healthcare professionals, including 9 remaining from the first phase and 4 new recruits due to job changes and the development of new services.

All the interviews with PLwLC and practitioners were conducted remotely, either online by Zoom or telephone (apart from with two PLwLC who had hearing accessibility issues). The interviews ranged from 30 to 110 min in length and averaged around 45 min.

Data analysis

We adopted a reflexive thematic analysis approach to interpret the rich data10. Given the longitudinal nature of our study, the data analysis presented in this paper focused on "changes" in healthcare both from an individual and structural perspective (by talking to both PLwLC and practitioners). As such, we “ground the interviews in an exploration of processes and changes which look both backwards and forwards in time [ 28 ](p.194)”, to explore the construction of person-centred healthcare in response to the novel and often complex condition of LC in the UK. To gain in-depth and critical insights into LC healthcare, we analysed the longitudinal qualitative data at three levels, namely, “description”, “analysis” and “interpretation” [ 29 ]. These levels aimed to understand “if/what changes had occurred”, “how/why these changes might have happened” and “what is the meaning and impact of these changes”.

Following these guiding questions, we conducted a three-step analysis (Fig.  2 ). Firstly, we generated and compared initial codes from both phases to describe the provision and development of LC healthcare over time. Based on step 1, we moved to step 2, incorporating a person-centred lens24 to analyse essential features of these developments and the systematic interconnections amongst these changes. Finally, in step 3 we interpreted how these changes address/overlook PLwLC as a ‘person’ from a holistic and consistent perspective. Throughout the analysis, we considered changes both at the individual and the collective levels to more fully capture changes in LC healthcare and the impact on individual experiences. During this threefold longitudinal analysis, we also carefully relate, contrast and further incorporate narratives from both PLwLC (service users) and practitioners (service providers) to explore the intersections between broader healthcare structures (e.g., operation, implementation and care delivery) and the localised experiences of PLwLC’s multifaceted and persistent needs.

An illustrate of our coding process

We present our findings on LC healthcare services in the UK broadly through three dimensions of the health system: primary, secondary and LC specialist care. While acknowledging that services also exist between and outside these systems, we briefly mention them to provide a broader view of LC healthcare. Figure  2 shows three overarching themes: theme 1 reports continued hurdles in accessing the first point of contact for LC healthcare; theme 2 highlights the complexity in progressing through secondary care; theme 3 captures unique challenges to the propagation of integrated LC care pathway. These themes are used to capture a systemic view of how people with LC are (or are not) supported in a person-centred manner. Our findings and the three dimensions of healthcare they encompass are interconnected. As we found, people were often bounced between these systems; practitioners also sought to cooperate across their own remit with practitioners from diverse fields.

The person-centred lens here is used as an overarching framework providing a consistent thread to understand the quality of healthcare for PLwLC. This lens focuses on multifaceted needs, including individual, relational, and existential aspects, all of which are interconnected, shaping their health experiences and identity in nuanced ways. As such, we examined how these needs are address/overlooked both within specific and across healthcare systems, exploring how person-centred lens can inform healthcare services, to more holistically (multifaceted needs) and consistently (across settings and time), to support LC. To protect participants’ confidentiality, pseudonyms are used throughout below.

Theme 1: continued hurdles to accessing primary care and to entering healthcare systems

Ongoing access barriers.

Primary care as the first point of contact with healthcare is often the principal gateway for people to enter health systems [ 30 ]. A predominant message voiced by our participants across the two phases of interviews is the significant barriers in accessing primary care, particularly general practice (GP) services, including not getting an appointment, receiving inadequate care and having to be persistent. Research has found that the COVID-19 pandemic has created a “perfect storm” to exacerbate the already pressurised primary care services10,14.

During the first phase of interviews in 2021–22, over 70% of our 80 LC participants faced significant challenges in securing GP appointments for their acute and persistent COVID-19 symptoms. Reported access barriers included “waiting on the phone for over two hours”, “making 100 calls on a Monday morning”, as well as “being turned away by receptionists or nurses before seeing a GP”. The struggle with access is vividly captured by Barry’s experience:

Barry: “ You’re almost like a leper going to the GP, just can’t get to the surgery… I just can’t see a doctor. It’s all done like this. You know, sometimes just done over the phone, it’s not even a video. ” (Male, White British, 60s, phase 1)

The situation had not improved significantly later in 2022, the rate of participants in phase 2 experiencing GP access barriers remained high, with over 65% affected. This continued delay and inaccessibility was also acknowledged by the GPs who we interviewed in both phases, reflecting long-standing issues related to budget caps, backlogs and workforce shortages in primary care. The ongoing hurdles in obtaining basic medical support, as well as clarification and reassurance, led to increased frustration and health-related anxieties among many of our LC participant:

Susan: “ You don’t know the fact that maybe you haven’t had treatment or things haven’t been picked up, maybe will impact your long-term health because you’ve been waiting for so long. I think that’s also the thing, have I missed the time to get some treatment or something? ”. (Female, White British, 50s,)

Alternative to GP care

Due to the ongoing barriers to accessing primary care, many LC participants had trouble accessing NHS healthcare for medical support, leading them to explore alternative ways to address their health concerns. They often resorted to self-management, using methods like painkillers, supplements, exercise, and meditation to cope with their symptoms. Some sought advice for LC symptoms from resources like the Internet (particularly online self-help groups) and local communities, including pharmacists. Only a small number of participants (just seven in phase 1 and five in phase 2 interviews, respectively) were able to access private GP services.

Despite ongoing barriers to accessing primary care, some participants, particularly those with urgent symptoms, turned to emergency care for faster and more immediate access to healthcare. However, emergency care often provided one-off support without follow-up, leaving participants like Sara without continuous assistance for their ongoing struggles:

Sara: “ I went to hospital and had x-ray, blood tests done and they said ‘you’ve got a blood clot, we think it’s on your lung but we need to book you for a CT scan’… [following the scan] I came home and they gave me some blood thinning tablets and after about 10 days I had a CT scan. Whatever it was the blood clot was not there anymore. They said that ‘there’s some damage on the lungs’. So they gave me some inhalers and I got to go home. After that I wasn’t well at all… They could clearly see that but what the long effect is we don’t know. But I’ve not been back to the GP to find out, the only follow-up appointment I was offered was in hospital with the blood clot.” (Female, British Pakistani, 30s, phase 1)

In addition, community-based care, such as physiotherapy, was another avenue for alternative care; however, access to it often had to be gained through primary care. When asked about how physiotherapists identify people with needs related to LC symptoms, Luke, who was a PLwLC and a volunteer in a local therapy centre, said (this issue remained in phase 2 interviews):

Luke : “That’s what we’re waiting on the hospital to do for us. And we haven’t had any referrals yet. I don’t know what the hold-up is. We’ve not, we are all geared up ready for them, but we haven’t had anybody come through.” (Male, White British, 60s, phase 1)

The above experiences underscore the ongoing call to emphasise the significant role of primary care in LC healthcare9,30. Nonetheless, due to persistent access barriers and/or previous negative healthcare experiences, approximately half of our participants felt “exhausted” and had to “give up” trying to engage with their GP and enter the healthcare system. The number remained persistent in phase 2, further fuelling people’s anxiety and worries about their symptoms.

Increasing awareness of LC

Despite a rather disheartening picture depicted above, we also observed improvements in primary care for PLwLC during our two-phase interviews (November 2021 – October 2022). In phase 2, some of our LC participants reported increased awareness of LC as a novel medical condition among professionals. These improvements in primary care were also supported by accounts from primary care practitioners, with one GP mentioning that she had more information to draw upon to recognise and empathise with patients’ LC symptoms:

“ I’ve seen patterns I suppose of what people have had. So certainly right at the beginning, it was all the lost your taste and smell and you’re going to have a cough and breathlessness, particularly kind of neuro type symptoms. Those kind of things I can reassure patients that I’ve seen and that people generally tend to get better, so you get a bit more idea of what kind of symptoms are coming.” (GP 1, phase 2)

While some patients experienced improved support, or at least understanding from their GP, this increased awareness of their condition was not regionally/nationally consistent. According to a GP we interviewed, this discrepancy may be attributed to the lack of “systemic training and knowledge” about LC, especially during the early days of the pandemic, for primary care practitioners. In other words, whether and how to support LC was often dependent on practitioners’ own wishes/opinions/understandings. As a result, a contrasting picture was observed, with a few patients reporting improved primary care while many others still found the improvement limited. Craig shared that although his GP acknowledged his LC symptoms, she tended to be "reactive" rather than "proactive" in providing support.

Craig: “ She took note of it [LC], obviously, we’d had it– but didn’t prescribe or didn’t expand on the conversation. She was just more reactive as opposed to proactive on it.” (Male, White British, 50s, phase 2)

This ongoing inadequacy and disparities in LC support from primary care may contribute to the exacerbation of people’s worries and even desperation. During our phase 2 interviews, some participants expressed the sentiment that “there is nothing they [GPs] can do”, with a few opting to forgo primary care in favour of alternative forms of support.

As illustrated in the theme above , we identified barriers in LC primary care, termed "de-personalisation" by one PLwLC participant. While this phenomenon was not unique to primary care and was also observed in secondary and specialist care settings, it was particularly significant as it created a sense of neglect at the gateway to the health system. Many participants with prolonged and often 'mysterious' LC symptoms faced various hurdles in accessing primary care for initial clarification and support. Even those, who gained access, often struggled with limited understanding and support from practitioners as the first contact point with professional healthcare. This could further illegitimatise their experiences and failed to validate their suffering. Despite ongoing efforts to improve LC support in primary care, the continued uncertainties around the condition seemingly caused significant emotional distress, including frustration, anxiety and fears, related to both healthcare access and their illness. Participants often likened the differentiated progress in primary care to a "postcode lottery", adding to the uncertainty they felt about their healthcare.

Failing to meet the individual and relational needs of PLwLC in primary care may have further implications for their existential needs [ 31 ]. These continued multifaceted uncertainties may hinder their ability to access clinical and social support to understand and adapt to this novel health condition. These experiences can be particularly existential, as exemplified by Susan's concerns about her shattered health and future due to limited healthcare access. Without sufficient clarification and reassurance from reliable medical resources, PLwLC may struggle to retain meaning and purpose as they navigate their ongoing life with the illness31.

Theme 2: complexity in navigating secondary care

Specialised but fragmented care.

Secondary care, compared to primary care, tended to provide more specialised support for many of the often-complicated symptoms faced by PLwLC. However, due to the limited availability of secondary care and the ongoing issues around access to primary care, only 17 out of 80 participants had access to secondary care in phase 1 (e.g., for cardiological, respiratory, neurological and mental health complications). In phase 2, the situation remained largely similar, with 14 participants being discharged due to their improved conditions while 5 more with worsened symptoms were being referred to secondary care. While these participants appreciated the targeted care they received, they also felt that the highly specialised nature of secondary care sometimes could restrict their chance to access more holistic and integrated care. Lucy found her fatigue and brain fog symptoms were not adequately addressed by varied specialists:

Lucy: “ The thing I found the most difficult about the healthcare system is that they don’t see things as a round so that you know you kind of go and see a few different specialists and one’s looking at your lungs, and one’s looking at your head, and one’s looking at your heart but nobody’s pulling all together and sitting down and going, this is what we think. There’s no, you’re not really sure what the journey is or what they’re trying to find out, what the conclusion is.” (Female, White British, 50s, phase 1)

The above situation was not particularly better in phase 2 as Lucy and her peers still struggled to access what she described as ‘holistic care’. This over-specialisation could also be attributed to a lack of communication across healthcare settings. A GP reported her frustration, saying, “ I want to know as a GP that my patients have been worked up for properly. I have to ask secondary care [for updates] because it’s out of my hands” (phase 1 interview).

The inconsistency within and beyond secondary care for PLwLC could also cause frustration. In our study, only a few participants, such as Heather, who had a certain level of healthcare knowledge and communication skills, could navigate the highly specialised and fragmented care systems, often employing extreme persistence at the cost of becoming known as “infamous”:

Heather: “ I phoned [hospital A] the next day because although it's another hospital called [hospital B] in [location C], it was through [hospital A] that I had to try and weave my way through. And thankfully, I'd taken so many phone numbers when my husband was at [hospital A], I managed to go through to a specialist and say, ‘I can't get through to your booking clerk, but I need to do this’, and because we're infamous now I think, [laughs], I managed to get – she got me an emergency appointment for the afternoon. ” (Female, White British, 60s, phase 1)

Heather’s situation in phase 2 was “slightly better but not significantly”. After enduring prolonged struggles while navigating secondary care and beyond, Heather expressed that “ they [healthcare professionals, such as specialists, paramedics and receptionists] seemed to be like cogs working in different directions ”. This disintegration of care provision was not unexpected to our participants working in secondary care. A respiratory consultant highlighted that " this is not just a problem for Long COVID, but a broader issue " due to a lack of funding and staff (phase 2).

Importance of being in the system

Despite the barriers to accessing holistic and consistent secondary care, our LC participants predominately emphasised the importance of being in the healthcare system (particularly secondary care after GP referrals). Those referred/admitted to secondary care (e.g., hospitalisation, specialist care), often had positive healthcare experiences. For instance, Patrick entered secondary care via hospitalisation for his acute COVID-19 symptoms. Whilst he had to wait for and navigate various specialist care pathways over a lengthy period after hospital discharge, he still found the support he received “helpful” for his LC recovery:

Patrick: “ They [the hospital] were very supportive – after I left hospital there was in total about seven or eight months of follow-up support. I had the general nurse, the general consultant because they were worried about strokes and they were worried about different things, neurosurgeon, a lot of different people doing bloods. So I had to have the different people signed off and occupational psychiatry had to sign me off etc. So bit by bit they all signed me off until I got out and then even thereafter each function needed to monitor you afterwards. So I had a lung specialist because my lung was damaged. I had a haematologist, so different functions… Definitely, I mean the support helped me recover .” (Male, British Indian, 50s, phase 1).

Such support in secondary care was afforded by concentrated resources and the highly specialised nature of treatment, ensuring patients are “healthy enough” to be discharged and referred back to primary care9. Therefore, many of our participants were determined to enter the specialised secondary care system. This struggle was particularly evident in Gemma’s persistence, expressed across the two interviews, as she wanted her “ Long COVID to be logged in the NHS ” for referral and further examinations/treatment of her multisystemic symptoms of fatigue, pain and sensory issues (Female, white British, 63).

These attempts to enter and move forward through the system however were often obstructed by barriers in secondary care, and sometimes connected to primary care, reflecting broader issues in the UK public healthcare system. A service manager reported ongoing efforts to clear referral delays at her hospital over the two interviews, highlighting both the healthcare access barriers and the impact on the wellbeing of PLwLC:

“ Sometimes there are delays in getting the bloods and things like that, I think there is a huge barrier to people even getting an appointment with their GP to get referred and that can lead to a lot of helplessness and hopelessness for people like, what’s the point and will I get any help anyway? That’s a huge barrier, I hope that people know that widely in society what’s available and I think the challenge is each local commissioning area have a different pathway .” (Service manager 1, phase 2)

Increased challenges to address blurred boundaries between LC and other health conditions

Secondary care faces ongoing challenges due to the novel and rapidly evolving symptoms of LC. Our conversations with participants during 2021–22 revealed that LC symptoms often develop alongside other pre-existing health issues, creating complications that can be challenging to address even with highly specialised care. Some interviewees expressed frustration with the lack of adequate support available to manage their LC symptoms alongside other health concerns. For example, Linda's hospital admission, reported in her phase 1 interview, was unable to determine whether her throat problem was related to LC or another underlying condition. In the second interview, she continued to express her concerns about changing LC symptoms and her desire for more specialised/personalised healthcare.

Linda: “ Obviously, symptoms are still coming up and changing, so it’s not that you’re living with long term symptoms that are the same, that actually symptoms are changing, and new symptoms are coming along, that weren’t there a year ago; which is very odd… That’s why you want to get to be seen [by specialists], so if they start to see something worrying coming out, that you’re on a list somewhere. At the moment I don’t feel I’m on a list anywhere of people that are suffering from this .” (Female, white British, 30s, phase 2).

The above accounts highlight the importance of healthcare providers addressing the interconnected nature of LC symptoms and other health issues for more effective care. For instance, in a phase 2 interview with a hospital service manager, a respiratory care service shifted to acknowledge that the symptoms of middle aged PLwLC could potentially be compounded by LC and menopause:

“ We’re realise that women who are of menopausal age those have been affected more by post COVID as well. We’ve done some training sessions on the menopause and post COVID to try and again make people more aware.” (Service manager 2, phase 2)

Despite the positive developments observed in region A, the majority of participating PLwLC faced persistent barriers in accessing specialist care for their increasingly interwoven symptoms between LC and other conditions. In some cases, due to the specialised nature of secondary care, PLwLC with complex and unknown symptoms could face exclusion from the healthcare system. Penny was one of those who was already ‘in the system’ due to pre-existing health issues, but had to re-enter specialist care via the aforementioned challenging primary care routes for her LC-related pains that intersected with her previous conditions:

Penny: “ Like my rheumatoid I know when I’m having a flare up, I visit the consultant and I have a good back-up with the rheumatoid team. If I’m having a flare up or something’s wrong, I know that I phone up, the rheumatoid team and they help me and they support me… The thing [joint pain] with Covid is basically I don’t know what I’m supposed to be looking for and nobody’s actually said anything, so I get confused sometimes when I feel ill, I don’t think of Long Covid and just think, oh maybe I’ve got a chest infection or something else. Then you go to your GP and they say Long Covid and then you don’t know what it is .” (Female, white British, 60s, phase 2).

The findings in this theme illustrated the difficulties our LC participants faced in navigating support for their complex symptoms within the complicated secondary care system. Being “in the system” was essential for our participants access to various specialised medical resources, but the challenges persisted in supporting LC as a novel condition within an already strained healthcare system. While primary care serves as the gateway to the health system, secondary care is where patients seek improvement, if not full recovery, of their medical conditions5,9. As demonstrated earlier, the lack of holistic and consistent support in specialist care could undermine the physical, emotional, social, and financial aspects of PLwLC in an ongoing manner. The slow progress in secondary care may gradually erode people’s hope to recover through receiving specialised (often as perceived “more advanced”) support. Such experiences in secondary care might have an existential dimension, as captured by Dorothy’s reflections on her vulnerability and even mortality in phase 2 interview: “ this is the final curtain, this is the last, ‘cos you think, well this isn’t getting any better, I don’t know what this is ” (Female, white British, 60 s).

Theme 3: unique challenges to promote LC integrated care pathways

Still limited coverage.

To provide PLwLC with more specialised and integrated care, a variety of LC clinics in England and similar services in the rest of the UK have been established. The NHS plan for improving long COVID services published in 2022 highlighted the accomplishments of developing new services and outlined plans to cut waiting times, improve care quality and reduce health inequalities12. However, our study found that these pathways were largely unknown and challenging to access for people with LC. In phase 1, only 4 out of 80 participants had accessed LC clinics through GP referrals, and this only increased to 5 in phase 2. A major contributing factor to this issue was the prevalence of barriers encountered when trying to enter and navigate healthcare systems. For example, Christine had initial difficulties accessing her GP and faced a lengthy process of medical examinations before being referred to a LC clinic (female, white British, 50 s). By her second interview, she had been on the LC clinic waiting list for over a year, despite her proactive efforts to communicate with her GP and the clinic.

The limited access also lay in a lack of awareness about LC integrated/specialised care. Approximately one third of our participants with LC in phase 1 had never heard of LC clinics or other similar services. Despite being provided with information about the integrated care pathways, many participants’ knowledge remained largely limited in phase 2. This was due to the scarcity of publicly accessible information about the specialised services and difficulties in accessing them (or the healthcare systems more generally):

Malcolm: “ I haven’t heard about a Long COVID clinic or something like that in this area if there was something I think she would have said, or if you could see, the nurse would have said, do you want to go to a clinic? But there’s nothing .” (Male, white British, 70s, phase 2).

As seen above, inadequate information for primary care practitioners was another contributor to the limited access to LC integrated care pathways. This issue was reiterated by a GP who had to rely on her patients for information about the support offered in LC clinics:

“ I was relying on my patients, I was like, tell me what the Long COVID clinic is like and come back to me. And then I can tell the next person ”. (GP 1, phase 1)

The situation improved in phase 2 interview as this GP could access notes via NHS systems from the LC clinics about support details for her patients, but she still struggled to stay updated on the fast-evolving LC care pathways due to a lack of direct communication from the local LC clinics.

Tendency to develop a pathway towards holistic and consistent care

A rapidly evolving picture was captured across the two phases of interviews, highlighting how LC integrated pathways were developed from initially highly specialised medical care (e.g., often centred around respiratory care) towards the provision of increasingly holistic support. In phase 1, two out of the four participants who reported having access to LC integrated care pathways, found that LC clinics tended to "apply existing medical models to a new illness", be "led by respiratory specialists", and "focus on 'clinically severe and visible' symptoms" (e.g., organ damage, lung issues). One of them, Lucy, called for a “One-Stop-Shop” for more integrated and holistic care:

“ A one-stop-shop where you can, say, ‘this is Long COVID, this is what people have experienced, this is what doctors can do, this is what they can’t do, this is what people have found helpful, this is what’s available’ would be really helpful. It just seems so random, what people are getting and aren’t getting .” (Female, White British, 50s, phase 1)

While acknowledging the heavily clinical focus of LC care pathways, practitioners also emphasised the evolving support for the holistic wellbeing of people with LC. In phase 1, a LC clinic coordinator reported the development of a comprehensive psychology-led course to empower patients to better identify their needs and manage their symptoms. Notably, there were further enhancements addressing existential needs during phase 2. A hierarchical framework of identity roles was adopted to address patients' awareness of identity loss and mortality to (re)develop a ‘flexible and resilient self’, assisting them in prioritising the recovery of their primary identity and well-being.

Improvements can also be observed in service providers' efforts to offer follow-up care that specifically addresses the fluctuating nature of LC symptoms. For instance, the previously mentioned care pathway coordinator discussed the potential for self-referral to the LC clinic. Similarly, a rehabilitation coordinator introduced their plan to implement "Patient-Initiated Follow-Ups" to empower patients to play a more active role in seeking specialised care consistently, while acknowledging their limited capacity:

“ What we’re just at the point of starting to offer are the Patient Initiated Follow-Ups, so once they’ve been through the groups that we feel have been appropriate and they’ve gone through them all once, it’s then about some sort of self-management and then offering them to see how you go on. If you feel you need to come back to us, you initiate another follow-up with us. But as I say, we’ve still got patients working through and we are not quite yet, but that’s our intention .” (Rehabilitation coordinator 1, phase 2)

Uncertainties in funding security

Positive changes in LC care pathways were indeed observed over the two 2021–2022 interview rounds. However, significant uncertainty lingered regarding funding sustainability for specialised care for this persistent condition. This uncertainty was not unique to LC specialised care but reflected broader NHS resource challenges, with stretched and fragmented resources10,25.

Healthcare professionals in region A voiced concerns about long-term funding. Almost half of them noted how funding constraints affected daily operations, service reach, capacity, and future planning for LC specialised services. A manager for specialised medicine highlighted the persistently limited availability of funding for expanding and even maintaining the services. In phase 1 in early 2022, she underscored the challenges of prioritising funding over the LC patients’ real needs, further creating a highly uncertain future for service provision:

“All these patients, that we’ve just talked about ending up within the community and getting referred back in, they’re not funded. We haven’t got any funding for increased activity related to Long COVID. We’ve got at the moment recovery money which means we can put on extra activity and have extra sessions for the consultants that can be funded. But long term it’s very difficult to predict how long this is going to go on for. We keep stopping and starting activity depending on spikes, so we don’t know what our backlog is going to look like and we don’t know what the long-term implications are going to be.” (Specialised medicine manager, phase 1)

In the second interview in late 2022, these situations had not improved and, in some cases, had deteriorated. Both this manager and other service providers highlighted the potential for long-term funding insecurity to disrupt LC specialised care in a multitude of ways, affecting staff retention, consistency and coordination:

“It’s much harder to recruit to temporary contracts and secondment, it’s destabilising for the service where you take the person from because it’s really hard for them to fill that vacancy… we are three separate Trusts working together and it’s quite complicated then because each Trust has their own policies and procedures that aren’t necessarily the same. Everyone still has a contract with one Trust and just follow those procedures from their Trust which might be different from their colleagues’ procedures. So those things are quite challenging.” (Service manager 1, phase 2)

The funding uncertainties prompted some creative approaches to sustain LC specialised care within the constrained financial parameters. Some practitioners disclosed plans to secure additional funding. Some other managers and commissioners also deliberated the possibility of integrating LC specialised care into existing post-viral/chronic illness pathways, aiming for more consistent and potentially comprehensive care (e.g., drawing lessons from other health conditions).

To sum up, healthcare is comprised of various systems, including primary (community), secondary, and specialised care. Theoretically specialised healthcare aligns well with the philosophy of person-centred care, as both emphasise the importance of tailoring treatment and care plans to meet patients' specific and holistic needs23. While the specialised pathways showed some improvements towards a more holistic approach to LC, significant gaps persist. These gaps hinder the integration of LC specialised care into the healthcare system to address LC's multifaceted and persistent nature effectively. These gaps primarily result from limited access to LC specialised care, driven by funding insecurity and subsequent workforce shortages, often intertwined with issues in primary and secondary care systems. This fragmentation was exemplified by the experience of Lucy (Female, White British, 50s), who initially received physical therapy from a LC clinic but faced discontinuation and challenges accessing follow-up support within primary and secondary care systems.

Our study reveals persistent challenges in seeking support within the UK healthcare system for PLwLC, leading to continued barriers, delays, and disruptions in accessing treatment and understanding their complex symptoms. This extends our prior work on healthcare access issues and the extensive impact of LC on PLwLC’s wellbeing10,31. It deepens our understandings of how the lingering struggles in the under-resourced and complex UK healthcare system may not only undermine PLwLC’s health needs but can also cause enduring disruptions to their identity as a holistic being.

Living with highly individualised LC conditions, our participants had to exert significant, and often repeated, efforts to access primary care (the gateway to the healthcare system). They also needed to demonstrate persistence and, at times, sheer determination in navigating the highly specialised and often inconsistent care provided through secondary care and LC specialist care pathways. While the study period between 2021–2022 revealed some practical and structural improvements (e.g., increased understanding from healthcare workers, provision of more holistic care), long-standing systemic issues, including limited access, a shortage of available treatments, and disconnections between these services, remained significant obstacles14. These obstacles further hindered many participants from accessing medical care for their distressing symptoms based on their desires and preferences. In essence, their fundamental needs for physical and emotional comfort as a person was not fully acknowledged and supported22. The insights into these multi-level issues also resonate with key actions outlined in the Long COVID: the NHS plan for 2021/22 to expand LC health support and equity through enhanced services and care coordination within and across primary and specialist care [ 32 ].

Capturing the voices of our participants facing ongoing struggles of “being turned away” and even “being abandoned” by health services, our study highlights the vital relational and existential dimensions of healthcare in the context of LC. For many, interacting with healthcare professionals was not merely about addressing physical symptoms, but also finding an accessible and trustworthy source to make sense of their suffering and adapt to their changed lives more generally. The persistent challenges in addressing relational needs within and across the various health systems were also closely linked to their longing for meaning to justify their existence in the face of their compromised health and with a fractured body. Lack of validation from healthcare and reassurance from practitioners could elevate the risk of existential encounters with meaninglessness, particularly a profound sense of anxiety being disconnected from both their once-familiar past and their greatly uncertain future31. These multifaceted and deeply painful struggles affirm the NHS plan for improving long COVID services , aiming to enhance healthcare capacity and prioritise holistic and continuous care for PLwLC in a more interdisciplinary and inter-systematic manner12.

Our findings also further expand on the scope of person-centredness in healthcare, moving beyond individual perspectives of dignity, choice, and autonomy to emphasise a more relational approach that situates individuals' healthcare needs within a rich matrix of relationships and socio-cultural beliefs [ 33 , 34 ]. The evolving concept of person-centred care now places a greater emphasis on its holistic nature. This calls for a thorough consideration of each patient's unique experiences, acknowledging and supporting their life histories, social contexts, and the relationships that matter to them34. It also emphasises the importance of preserving and respecting patients’ cherished personhood, thereby preventing any unintentional harm to these esteemed facets of their existence.

This holistic perspective is particularly relevant to our study as our participants shared their experience of feeling that they had lost part, if not all, of themselves as a person to their complex and persistent symptoms31. Considering the extended and often unpredictable illness trajectories associated with LC, failing to provide person-centred healthcare could pose a substantial challenge to PLwLC’s ability to alleviate clinical distress and, more importantly, to find meaning in enduring suffering. Essentially, our study highlights the pressing need for person-centred care in managing chronic illnesses like LC, especially in the absence of immediate and efficient treatments. To truly support individuals in their health journeys, healthcare for LC should holistically address their multifaceted and interconnected needs, ensuring a consistent sense of identity. As such, our findings underscore the practical importance of person-centred healthcare in assisting PLwLC to gain security, understanding, and the ability to live with their health conditions as an integral part of their ongoing lives.

By examining the healthcare needs of our participants across primary, secondary, and specialised care pathways, our study enhances the holistic nature of person-centred care at a structural level. LC, along with the broader challenges posed by the COVID-19 pandemic, has exacerbated the conflicting priorities between individual care and public health interests9. Our findings regarding the fragmentation and inconsistency in care highlight the conceptual and empirical significance of incorporating a comprehensive approach to healthcare structures to ensure person-centred care23. As strongly voiced by PLwLC, their healthcare struggles often went beyond a single health system and were encountered across various provisions. The narratives shared by healthcare professionals reveal both macro systemic issues (e.g., funding supply, design and priorities of health services at different levels) and micro structural barriers (e.g., lack of inter-organisational cooperation) that impede holistic care provision to PLwLC. To better view PLwLC as a whole and living person, it is essential to bridge the gaps and inconsistencies within and across various healthcare systems. This extends beyond LC healthcare to other chronic conditions, such as chronic fatigue syndrome. Existing literature on chronic illness has highlighted empowerment as a key approach to ensure consistent holistic care for patients [ 35 ]. Building upon this, our findings suggest the significance of further integrating patients into and across different health systems for stable (e.g., funding and workforce security), continuing (e.g., consistency in care) and flexible (e.g., training and understanding) care to address PLwLC’s needs and identity through a more person centred lens.

Finally, the longitudinal focus of our study captures both the evolving healthcare needs of our participants and the importance/challenges of aligning healthcare infrastructures to address these changes. Methodologically, we generated a rich set of qualitative data spanning across 2021–22, providing insights into the fluidity of individual healthcare needs, broader health systems and also the relationships between them28. Our research method, designed to track changes over time, has made substantial contributions on two fronts. Conceptually, it has greatly expanded our comprehension of the evolving healthcare needs of individuals, exposing the often complex (e.g., changing or increasing) intersections between conditions like LC and other health issues. This underscores the imperative nature of adopting a holistic and person-centred approach to care, one that recognises the interconnectedness of various health dimensions, both concurrently, across different aspects of life and longitudinally over time. On a practical level, our study has underscored the critical necessity for healthcare providers to regularly review and adapt care plans to accommodate these dynamic shifts in patient needs. This highlights the vital importance of flexibility and responsiveness in healthcare strategies, particularly in chronic illness management.

Limitations and implications

While our study offers valuable insights into the challenges and complexities of person-centred healthcare for LC, there are several limitations to consider. Firstly, limited information was reported by our participants on LC community-based care, such as physiotherapy and rehabilitation services, as well as tertiary care. These areas require further exploration to comprehensively address the diverse healthcare needs of LC suffers. Secondly, our study's focus on healthcare professionals in region A may not fully represent the healthcare experiences and developments in other geographic locations, warranting future research in more diverse settings. Additionally, whilst we engaged with a socio-economically and ethnically diverse sample, the absence of Black minority participants in our study highlights the further need for research that captures the unique healthcare experiences within this group and beyond. Lastly, our study generated rich data, underscoring the importance of future research to further explore the multifaceted challenges and opportunities in person-centred care for LC and to potentially extend these findings to inform care for other chronic conditions.

Availability of data and materials

The data that support the findings of this study are available on request from the corresponding author. The data will be submitted to the UK Data Service following the completion of the CONVALESCENCE study.

Abbreviations

General Practitioner

National Health Service

Office for National Statistics

People Living with Long COVID

United Kingdom

Office for National Statistics. Technical article: Updated estimates of the prevalence of post-acute symptoms among people with coronavirus (COVID-19) in the UK: 26 April 2020 to 1 August 2021. London: Office for National Statistics; 2021. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/articles/technicalarticleupdatedestimatesoftheprevalenceofpostacutesymptomsamongpeoplewithcoronaviruscovid19intheuk/26april2020to1august2021

Office for National Statistics. Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 30 March 2023. London: Office for National Statistics; 2022. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/30march2023

Lopez-Leon S, Wegman-Ostrosky T, Perelman C, et al. More than 50 long-term effects of COVID-19: a systematic review and meta-analysis. Sci Rep. 2021;11:16144. https://doi.org/10.1038/s41598-021-95565-8 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Taylor AK, Kingstone T, Briggs TA, et al. “Reluctant pioneer”: A qualitative study of doctors’ experiences as patients with long COVID. Health Expect. 2021;24:833–42. https://doi.org/10.1111/hex.13223 .

Article   PubMed   PubMed Central   Google Scholar  

Moynihan R, Sanders S, Michaleff ZA, et al. Impact of COVID-19 pandemic on utilisation of healthcare services: a systematic review. BMJ Open. 2021;11: e045343. https://doi.org/10.1136/bmjopen-2020-045343 .

Article   PubMed   Google Scholar  

Kingstone T, Taylor AK, O’Donnell CA, Atherton H, Blane DN, Chew-Graham CA. Finding the “right” GP: a qualitative study of the experiences of people with long-COVID. BJGP Open. 2020;4(5):bjgpopen20X101143. https://doi.org/10.3399/bjgpopen20X101143 .

Ladds E, Rushforth A, Wieringa S, et al. Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality principles for services. BMC Health Serv Res. 2020;20:1144. https://doi.org/10.1186/s12913-020-06001-y .

Ireson J, Taylor A, Richardson E, Greenfield B, Jones G. Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community. Health Expect. 2022;25(4):1753–65. https://doi.org/10.1111/hex.13518 .

Wolf S, Zechmeister-Koss I, Erdös J. Possible long COVID healthcare pathways: a scoping review. BMC Health Serv Res. 2022;22:1076. https://doi.org/10.1186/s12913-022-08384-6 .

Baz SA, Fang C, Carpentieri JD, Sheard L. ‘I don’t know what to do or where to go’. Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: a qualitative study in Bradford, UK. Health Expect. 2023;26:542–54. https://doi.org/10.1111/hex.13687 .

Maxwell E. Living with COVID-19. A dynamic review of the evidence around ongoing COVID-19 symptoms (often called long covid). Natl Inst Health Res. 2020;31:197–200. https://doi.org/10.3310/themedreview_41169 .

Article   Google Scholar  

NHS England. The NHS plan for improving long COVID services. London: NHS; 2022. https://www.england.nhs.uk/wp-content/uploads/2022/07/C1607_The-NHS-plan-for-improving-long-COVID-services_July-2022.pdf

Dean E. What happens inside a long covid clinic? BMJ. 2023;382:1791. https://doi.org/10.1136/bmj.p1791 .

Bambra C, Lynch J, Smith KE. The Unequal Pandemic: COVID-19 and Health Inequalities. Bristol UK: Policy Press; 2021.

Book   Google Scholar  

Ladds E, Rushforth A, Wieringa S, et al. Developing services for long COVID: lessons from a study of wounded healers. Clin Med (Lond). 2021;21(1):59–65. https://doi.org/10.7861/clinmed.2020-0962 .

Maclean A, Hunt K, et al. Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy. SSM Qualitative research in health. 2023;3: 100207. https://doi.org/10.1016/j.ssmqr.2022.100207 .

Rushforth A, Ladds E, Wieringa S, Taylor S, Husain L, Greenhalgh T. Long Covid - The illness narratives. Soc Sci Med. 2021;286:114326. https://doi.org/10.1016/j.socscimed.2021.114326 .

Wang Y, Bao S, Chen Y. The Illness Experience of Long COVID Patients: A Qualitative Study Based on the Online Q&A Community Zhihu. Int J Environ Res Public Health. 2022;19(16):9827. https://doi.org/10.3390/ijerph19169827 .

Thomas K, Gray SM. Population-based, person-centred end-of-life care: time for a rethink. Br J Gen Pract. 2018;68(668):116–7. https://doi.org/10.3399/bjgp18X694925 .

Coulter A, Oldham J. Person-centred care: what is it and how do we get there? Future Hosp J. 2016;3(2):114–6. https://doi.org/10.7861/futurehosp.3-2-114 .

Anderson M, Pitchforth E, Edwards N, Alderwick H, McGuire A, Mossialos E. United Kingdom: Health System Review. Health Syst Transit. 2022;24(1):1–194.

PubMed   Google Scholar  

Entwistle V, Watt I. Treating patients as persons: a capabilities approach to support delivery of person-centered care. Am J Bioeth. 2013;13(8):29–39.

NHS Health Education England. Person-Centred Approaches: Empowering people in their lives and communities to enable an upgrade in prevention, wellbeing, health, care and support. 2017. https://www.skillsforhealth.org.uk/images/pdf/Person-Centred-Approaches-Framework.pdf?s=form#:~:text=A%20person%2Dcentred%20approach%20puts,of%20what%20matters%20to%20people .

Fang C, Tanaka M. An exploration of person-centred approach in end-of-life care policies in England and Japan. BMC Palliat Care. 2022;21:68. https://doi.org/10.1186/s12904-022-00965-w .

Curnow E, Tyagi V, Salisbury L, et al. Person-Centered Healthcare Practice in a Pandemic Context: An Exploration of People’s Experience of Seeking Healthcare Support. Front Rehabil Sci. 2021;2: 726210. https://doi.org/10.3389/fresc.2021.726210 .

Lockyer B, Islam S, Rahman A, et al. Understanding COVID-19 misinformation and vaccine hesitancy in context: Findings from a qualitative study involving citizens in Bradford. UK Health Expect. 2021;24(4):1158–67. https://doi.org/10.1111/hex.13240 .

NHS England. Long COVID patients to get help at more than 60 clinics. https://www.england.nhs.uk/2020/12/long-covid-patients-to-get-help-at-more-than-60-clinics/

Neale B, Flowerdew J. Time, texture and childhood: The contours of longitudinal qualitative research. Int J Soc Res Methodol. 2003;6(3):189–99. https://doi.org/10.1080/1364557032000091798 .

Saldaña J. Longitudinal qualitative research: Analyzing change through time. Walnut Creet, California: Rowman Altamira; 2003.

Google Scholar  

Greenhalgh T, Sivan M, et al. Long covid—an update for primary care. BMJ. 2022;378:e072117. https://doi.org/10.1136/bmj-2022-072117 .

Fang C, Baz SA, Sheard L, Carpentieri J. ‘I am just a shadow of who I used to be’—Exploring existential loss of identity among people living with chronic conditions of Long COVID. Sociol Health Illn. 2023;46(1):59–77. https://doi.org/10.1111/1467-9566.13690 .

NHS England. Long COVID: the NHS plan for 2021/22. 2022. https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/06/C1312-long-covid-plan-june-2021.pdf

Pringle Jan, et al. Dignity and patient-centred care for people with palliative care needs in the acute hospital setting: A systematic review. Palliat Med. 2015;29(8):675–94.

Nolan M, Davies S, et al. Beyond ‘person-centred’care: a new vision for gerontological nursing. J Clin Nurs. 2004;13:45–53.

Stepanian N, Larsen MH, Mendelsohn JB, et al. Empowerment interventions designed for persons living with chronic disease - a systematic review and meta-analysis of the components and efficacy of format on patient-reported outcomes. BMC Health Serv Res. 2023;23:911. https://doi.org/10.1186/s12913-023-09895-6- .

Download references

Acknowledgements

We would like to acknowledge the following people and organisations for their kind support of this project: (1) the 80 participants who kindly shared their thoughts, feelings and experiences with us, (2) the Centre for Longitudinal Studies at University College London (who manage the five UK national cohort studies), (3) the region A cohort study maintenance team and researchers who supported the study and recruitment process, (4) Professor Nishi Chaturvedi who is the Principal Investigator of the broader CONVALESCENCE Long COVID study.

Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: providing the evidence base for health care services (CONVALESCENCE) was funded by NIHR (COV-LT-0009) and UKRI (MC_PC_20051). This research team is working on the Qualitative component of the work package, a qualitative longitudinal study.

Author information

Authors and affiliations.

Department of Sociology, Social Policy and Criminology, University of Liverpool, Liverpool, UK

Department of Health Sciences, University of York, York, UK

Sarah Akhtar Baz & Laura Sheard

Department of Education, Practice and Society, Institute of Education, University College London, London, UK

J. D. Carpentieri

You can also search for this author in PubMed   Google Scholar

Contributions

All four authors contributed to the conceptualisation and design of this article. CF developed and drafted the overall structure of the article. SB contributed to data collection and analysis. SB, LS, and JC reviewed the manuscript. All authors approved the final version to be submitted for publication.

Corresponding author

Correspondence to Chao Fang .

Ethics declarations

Ethics approval and consent to participate.

This study has been ethically reviewed and approved by University College London Institute of Education Research Ethics Committee (ref: REC 1554) and University of York Health Sciences Research Governance Committee (ref: HSRGC/2021/466/B). We have also received permission from the participating cohort studies to conduct this study with their cohort members. All participants provided their informed consent prior to data collection and were informed that their anonymised data will be used in publications. The study was conducted according to the guidelines of the Declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Supplementary material 1., supplementary material 2., supplementary material 3., supplementary material 4., rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Fang, C., Baz, S.A., Sheard, L. et al. “They seemed to be like cogs working in different directions”: a longitudinal qualitative study on Long COVID healthcare services in the United Kingdom from a person-centred lens. BMC Health Serv Res 24 , 406 (2024). https://doi.org/10.1186/s12913-024-10891-7

Download citation

Received : 17 November 2023

Accepted : 22 March 2024

Published : 01 April 2024

DOI : https://doi.org/10.1186/s12913-024-10891-7

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Chronic illness
• Person-centred care
• Health services
• Longitudinal
• Qualitative

BMC Health Services Research

ISSN: 1472-6963

• General enquiries: [email protected]

We are back in Europe and hope you join us!

Prague, Czech Republic, 15 – 17, May 2023

Evolving the Scaled Agile Framework:

Update to SAFe 5

Guidance for organizing around value, DevSecOps, and agility for business teams

• SAFe Contributors
• Extended SAFe Guidance
• Community Contributions
• SAFe Beyond IT
• Books on SAFe
• Download SAFe Posters & Graphics
• Presentations & Videos
• FAQs on how to use SAFe content and trademarks
• What’s new in the SAFe 5.1 Big Picture
• Recommended Reading
• Learn about the Community
• Member Login
• SAFe Implementation Roadmap
• Find a Transformation Partner
• Find a Platform Partner
• Customer Stories
• SAFe Training

CASE STUDY: NHS Blood and Transplant

Agile transformation in a highly regulated environment.

“Adopting SAFe has set in motion the skill development and mindset for successful organizational change even as we scale to new programs, release trains, and people.”

— Gary Dawson , Assistant Director, Solutions Delivery

NHS Blood and Transplant (NHSBT) is a joint England and Wales Special Health Authority that provides a blood and transplant service to the National Health Service—supplying blood to hospitals in England, and tissues and solid organs to hospitals across the United Kingdom. Each year, donors give approximately two million donations of blood and 3,500 organs—saving and transforming countless lives.

Safeguarding the blood supply and increasing the number of donated organs involves collecting, testing, processing, storing, and delivering blood, plasma, and tissue to every NHS Trust in England. NHSBT also matches, allocates, audits, and analyzes organ donations across the whole of the UK.

With an increased need for its services, the organization recognized that effective technology is crucial to the delivery of safe products and services for patients. While looking ahead to its corporate 2020 vision, NHSBT identified several goals: replace an aging IT infrastructure, migrate to SaaS cloud-based services, and replace the critical operational applications underpinning its activities while ensuring they remain compliant with external regulatory monitoring.

NHSBT sought to revolutionize the way it interacts with blood donors by taking full advantage of the opportunities afforded by digital technologies. That means careful consideration of the realities of existing interdependencies between the national databases and NHSBT services, systems, data, processes, and people.

NHSBT identified the need to improve the business processes and the supporting IT environment in two major programs: ODT Hub and Core Systems Modernization.

“NHSBT was embarking on its most complex transformation program ever, initially focusing on the Organ Donation and Transplantation (ODT) area of its business,” notes Gary Dawson, Assistant Director, Solutions Delivery. “It needed to modernize a significant percentage of its core systems, platforms, and architecture along with re-aligning the infrastructure to more modern cloud-based technologies. The impact on the current business and practices couldn’t be underestimated across the organization—we were anticipating changes in how we work and how the system worked.”

It’s All About the People

NHSBT employees truly care about the organization and its work. Dawson, working with the wider NHSBT ICT organization, felt that it was important to correctly evaluate IT needs in line with organizational changes and be able to guide the system changes with the people using them.

“We recognized that both the overarching change and the adoption of a new technical platform and architecture—the effects on the culture of the organization—could, if not managed strategically, create a complex management problem and have an impact not only on the core business, but also the working relationships of the people within NHSBT,” Dawson says. “We needed a system and guidance to adapt and benefit from the changes and we were clear that the waterfall methodology that we had previously relied on wouldn’t support this change. We have dedicated and passionate people who work here, who really care about the cause and want to achieve the goals of the organization, but this change would only work if everyone was on the same page and we could go through the journey together.”

A New Approach to Adopt Change

IJI suggested NHSBT use Scaled Agile Framework ® (SAFe ® ) to help support the governance and manage both the organizational and technical changes. The ICT Leadership Team immediately took the view that this was the right methodology to achieve NHSBT’s goals and looked for an appropriate vehicle in which to introduce it. They decided the Organ Donation and Transplant (ODT) Hub Program as the most appropriate place to start implementation. ODT was initializing a hands-on software delivery and its timeline aligned well with the cadence of delivery that the framework provided. In addition, funding was in place and all the teams involved were based in one location. It would act as an ideal start and pilot for other elements of the organization to observe.

Because ODT was the first in a series of transformational changes, it would also be the model that other parts of the organization would take as an example, so it was crucial to get it right from the start. “IJI’s expertise with Agile transformation programs was a perfect fit with what we were aiming to do. Because we’d be working with new team groupings, we wanted to assist employees with transitioning to new working relationships and processes and also address the naturally risk-averse elements,” Dawson says. “We had to stay within regulatory standards. Rapid and vast change, if not done properly, has the potential to be disruptive, and actually hinder advancement. We chose Ivar Jacobsen International to provide company guidance, including coaching and training services, for the implementation of SAFe at NHSBT.”

A Proven Framework in SAFe

SAFe offers a broad range of content and phased implementation for organizations looking to increase productivity, change system structures, increase employee training, add solutions-based management and develop greater efficiencies across company platforms and people.

Because proper preparation is critical to set the stage for smooth adoption, IJI delivered a two-day workshop, ‘Leading SAFe,’ that engaged managers interactively while explaining what SAFe was and how to implement it properly.

Meanwhile, Dawson and IJI also began to structure team units. They identified product managers and product owners working collaboratively to define their roles within SAFe and guided them on SAFe practices. Training roll-outs started with 10 or 12 courses, ranging from large-room sessions of 30-40 people for SAFe overviews and discussions of how it could work within NHSBT. These were followed over a two-month period by smaller and more interactively focused sessions for product managers and owners intended to further guide them and increase engagement. Sessions included six to 10 people with the appropriate attendees to maximize the interaction and cross-functional engagement—even at the point of training.

Meanwhile, program managers, with Dawson, started to work on organizational components, such as planning sessions across the organization (75 – 80 people). Planning included who would be involved, as well as logistical challenges. Dawson spent considerable time explaining the rollout and SAFe implementation to all levels of employees to facilitate understanding and new team groupings. IJI was on hand at all stages of implementation to guide, coach, teach, and assist teams to transition to SAFe, following a strategic Program Increment (PI) cycle that ensured SAFe was adopted by employees with secure checkpoints and feedback along the way.

Building Success

Over the first Program Increment (PI), NHSBT’s ODT program came through on most of its deliverables. “It was amazing how much we were able to do in such a short time,” Dawson notes. “Now that we’ve done that, we can see what we need to do for future PIs and are continually able to refine and understand the teams’ velocity; it’s all falling into place and people really are committed.”

In that first PI, they were able to develop and learn to work effectively as a team and were able to deliver a committed, finite number of product features, as well as prioritize IT operations alongside the business element of the organization.

During the short introduction phase of three to four months, they were able to not only onboard and train all the teams aligned to the Release Train, they were also able to get the business component of NHSBT aligned with IT. There were challenges—such as integrating business managers into the teams and defining product owners—but “show and tell” sessions (every two weeks) and then a mid-PI retrospective helped the business see the benefits of the change process and really feel part of it.

“We would never have had that level of interaction in a waterfall delivery,” Dawson says. “To achieve the levels of understanding of both the technology and deliverables—along with all the interdependencies—would have taken months of calls, meetings, and discussions. We planned the next three months in just two days and now we retain that level of engagement on a daily basis.”

SAFe has become part of everyday procedures at NHSBT, with a series of checkpoints and loops that ensure communication is clear and efficient between teams and individuals. IJI understood that it was important to Dawson and NHSBT that change occurs but not at the cost of quality or control, and that value to the business should be equal to the ability of the organization to cope with the rate of change. NHSBT was able to build Agile confidence across the ODT program—senior stakeholders could support the cultural change because SAFe provides the governance required to build in the needs of Quality Assurance and regulators.

Successfully Scaling to New Programs

Having delivered the first MVP (Minimum Viable Product) of the ODT Program, it is clear that the introduction and embedding of SAFe within NHSBT has begun to provide early delivery of significant business benefits.

NHSBT has now run two SAFe big-room planning events for its Core Systems Modernization (CSM) Program, which is potentially a much larger program to replace its core blood offering system relating to blood, blood-derived products and tissues.

“We’re definitely not standing still,” Dawson says. “We are building momentum and will continue to run with the same rhythm that SAFe has provided us with our ODT program. Adopting SAFe has set in motion the skill development and mindset for successful organizational change even as we scale to new programs, release trains, and people.”

Organization

NHS Blood and Transplant

NHSBT sought to improve the business processes and the supporting IT environment in two major programs, and do so without adversely impacting its core business or service delivery to patients.

• SAFe ® & Consulting and Coaching Services
• In the first PI, NHSBT was able to deliver a committed, finite number of product features, as well as prioritize IT operations alongside the business part of the organization.

• Include all in the journey — The mutual understanding between IJI, managers and employee teams was critical. “It made the difference that we were bringing them on the journey—rather than telling them how we were going to impose something on them. It has been a key element in NHSBT’s success,” Dawson says.
• Show and tell — “Show and tell” sessions (every two weeks) and then a mid-PI retrospective helped the business see the benefits of the change process and really feel part of it.

Privacy Overview

Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.

Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.

Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.

Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.

Other uncategorized cookies are those that are being analyzed and have not been classified into a category as yet.

• International edition
• Australia edition
• Europe edition

What are the key findings of the NHS gender identity review?

Report by Dr Hilary Cass finds young people being let down by lack of research and evidence on medical interventions

• Thousands of children ‘let down by NHS’
• Review has major implications for mental health services

A review into the NHS’s gender identity services has found that children and young people have been let down by a lack of research and evidence on medical interventions in a debate that has become exceptionally toxic.

Dr Hilary Cass said her report was not about defining “what it means to be trans” or “undermining the validity of trans identities”, but about “how best to help the growing number of children and young people who are looking for support from the NHS in relation to their gender identity”. Here are the review’s key findings.

The evidence

“This is an area of remarkably weak evidence,” Cass writes in the foreword to her 398-page report.

Despite that, she adds: “Results of studies are exaggerated or misrepresented by people on all sides of the debate to support their viewpoint. The reality is that we have no good evidence on the long-term outcomes of interventions to manage gender-related distress.”

When Cass began her inquiry in 2020, the evidence base, especially about puberty blockers and masculinising and feminising cross-sex hormones was “weak”. That was exacerbated by the existence of “a lot of misinformation, easily accessible online, with opposing sides of the debate pointing to research to justify a position, regardless of the quality of the studies.”

Cass commissioned the University of York to undertake systematic reviews of the evidence on key issues, such as puberty blockers. It found that “there continues to be a lack of high-quality evidence in this area”. York academics, as part of their research, tried to document the outcomes seen among the 9,000 young people who the Tavistock and Portman NHS trust’s gender identity development service (Gids) treated between 2009-2020. However, it was “thwarted by a lack of cooperation from [six of England’s seven NHS] adult gender services”.

The new NHS services for these young people must routinely collect evidence of what treatments work, and learn from them to improve clinical practice, the report states.

Cass acknowledges that the discussion around how to care for such young people is polarised, both among health professionals and in wider society. For example, some clinicians believe that most people who present to gender services “will go on to have a long-term trans identity and should be supported to access a medical pathway at an early stage”.

“Others feel that we are medicalising children and young people whose multiple other difficulties are manifesting through gender confusion and gender-related distress. The toxicity of the debate is exceptional,” the report says.

Cass has been criticised for talking both to groups who support gender affirmation – the medical approach – and also those who believe greater caution is needed. Some experienced doctors who have offered different viewpoints have been “dismissed and invalidated”, she says.

“There are few other areas of healthcare where professionals are so afraid to openly discuss their views, where people are vilified on social media and where name-calling echoes the worst bullying behaviour. This must stop.”

The toxicity of debate has made some clinicians fearful of working with these young people.

The Tavistock and Portman NHS Trust

When its Gids service was set up in 1989, it saw fewer than 10 children a year, mainly birth-registered males who had not reached puberty. Most received therapy and only a few hormones from the age of 16.

But in 2011 the UK began trialling the use of puberty blockers, as a result of the emergence of “the Dutch protocol”, which involved using them from early puberty. However, a study undertaken in 2015-16, although not published until 2020, shows “a lack of any positive measurable outcomes”.

“Despite this, from 2014 puberty blockers moved from a research-only protocol to being available in routine clinical practice.” This “adoption of a treatment with uncertain benefits without further scrutiny” helped increase the demand among patients for them, the report finds.

An NHS England review in 2019, which examined the evidence on medical intervention and found evidence of its effectiveness to be “weak”, led to Cass being asked to undertake her review.

Changing patient profile

Referral rates to Gids have rocketed since 2014, but there has also been a shift in the profile of those using services. For centuries transgender people have been predominantly trans females who present in adulthood. Now the vast majority are teenagers who were registered as female at birth.

An audit of discharge notes of Gids patients between 1 April 2018 and 31 December 2022 showed the youngest patient was three, the oldest 18, and 73% were birth-registered females, according to the review, which tries to discover why things have changed so dramatically.

One area it explores is the deterioration in mental health among young people, and the links with social media, which have brought pressures to bear on them that no previous generation has experienced.

“The increase in presentations to gender clinics has to some degree paralleled this deterioration in child and adolescent mental health,” the review says. “Mental health problems have risen in both boys and girls, but have been most striking in girls and young women.”

Youngsters who present with gender identity issues to services may also have depression, anxiety, body dysmorphia, tics and eating disorders, as well as autism spectrum disorder (ASD) and/or attention deficit hyperactivity disorder (ADHD). Referrals to Gids are also associated with higher than average rates of adverse childhood experiences, the review says.

“There is no single explanation for the increase in prevalence of gender incongruence or the change in case-mix of those being referred to gender services,” the review says, concluding instead that gender incongruence is a result of “a complex interplay between biological, psychological and social factors”.

Transitioning

Young people’s sense of their identity is not always fixed and can evolve over time, Cass says.

“Whilst some young people may feel an urgency to transition, young adults looking back at their younger selves would often advise slowing down,” the report says.

“For some, the best outcome will be transition, whereas others may resolve their distress in other ways. Some may transition and then de/retransition and/or experience regret. The NHS needs to care for all those seeking support.”

Social transitioning

Social transitioning is the process by which individuals make social changes in order to live as a different gender, such as changing name, pronouns, hair or clothing, and it is something that schools in England have been grappling with in recent years.

According to the Cass review, many children and young people attending Gids have already changed their names by deed-poll and attend school in their chosen gender by the time they are seen.

The review says research on the impact of social transition is generally of a poor quality and the findings are contradictory. Some studies suggest that allowing a child to socially transition may improve mental health and social and educational participation.

Others say a child who is allowed to socially transition is more likely to have an altered trajectory, leading to medical intervention, which will have life-long implications, when they might otherwise have desisted.

“Given the weakness of the research in this area there remain many unknowns about the impact of social transition,” the review concludes. “In particular, it is unclear whether it alters the trajectory of gender development, and what short- and longer-term impact this may have on mental health.”

The review recommends that parents should be involved in decision making, unless there are strong grounds to believe this may put a child at risk, and where children are pre-puberty, families should be seen as early as possible by a clinician with relevant experience. It also suggests avoiding premature decisions and considering partial rather than full transitioning as a way of keeping options open.

Future care

The report says that in the future any young person seeking NHS help with gender-related distress should be screened to see if they have any neurodevelopmental conditions, such as autism spectrum disorder, and also given a mental health assessment.

NHS England has already in effect banned the use of puberty blockers because of limited evidence that they work. Cass found that there is “no evidence that puberty blockers buy time to think”, which their advocates have claimed. There is also “concern that they may change the trajectory of psychosexual and gender identity development” as well as pose long-term risks to users’ bone health, the review says.

There is also a lack of evidence to prove that masculinising and feminising hormones improve a young person’s body satisfaction and psychosocial health, and there is concern over the impact on fertility, growth and bone health. There is also no evidence they reduce the risk of suicide in children, as their proponents have claimed.

Lastly, the evidence base showing whether psychosocial interventions – therapy – work for those who do not undergo hormone treatment is “as weak” as for puberty blockers and cross-sex hormones.

All this means that there is “a major gap in our knowledge about how best to support and help the growing population of young people with gender-related distress in the context of complex presentations”.

• Transgender
• Young people

More on this story

Veteran trans campaigner: ‘Cass review has potential for positive change’

Cass review must be used as ‘watershed moment’ for NHS gender services, says Streeting

‘This isn’t how good scientific debate happens’: academics on culture of fear in gender medicine research

Five thousand children with gender-related distress awaiting NHS care in England

Ban on children’s puberty blockers to be enforced in private sector in England

What Cass review says about surge in children seeking gender services

Adult transgender clinics in England face inquiry into patient care

‘Children are being used as a football’: Hilary Cass on her review of gender identity services

Thousands of children unsure of gender identity ‘let down by NHS’, report finds

Review of gender services has major implications for mental health services

Most viewed.

• News & blogs

Evidence-based approaches to workforce wellbeing

16 February 2024

• Twitter logo
• Facebook logo
• LinkedIn logo

Although there is no one-size-fits-all approach to improving the wellbeing of your workforce, the evidence base on the most effective initiatives and approaches is constantly evolving and can provide a useful basis for reviewing your approach and making decisions as w e know how important it is to retain our valued NHS workforce. 

The NHS Long Term Workforce Plan  and the  NHS People Promise  explore how having a positive staff experience and a rounded support offer are vital to encouraging staff to remain in the workplace. The information provided below can support you in making informed choices to look after our NHS colleagues.

The evidence base can be useful across your health and wellbeing strategy, including to:

• build your business case and gain buy-in for change 
• inform decision making and help focus your approach, including funding decisions 
• guide your approach to evaluation and reviewing your strategy.

The workplace health and wellbeing evidence base is constantly growing and evolving – do you know about a key study we haven’t included here? Let us know by  emailing us .  

Overview of the health and wellbeing evidence base

NHS Employers commissioned the Institute of Employment Studies to undertake a rapid evidence review of the evidence base of health and wellbeing interventions used in healthcare and their implications for wellbeing outcomes. The key learning generated by this review is summarised below. You can find out more in the full  Health and Wellbeing Interventions Rapid Evidence Review , published in October 2020.

• There is no single one-size-fits-all solution for workforce wellbeing . Interventions with good take-up and which led to positive wellbeing outcomes were those where healthcare staff had options as to which interventions they could engage with and suited their wellbeing needs.
• The quality and extent of the evidence base is variable and needs more attention . Organisations often use a broad range of interventions, focusing on both mental and physical wellbeing, treatment-based and prevention focused interventions. The extent to which these interventions are robustly evaluated is variable. Organisations should pay great attention to evaluating their approaches, including both wellbeing outcomes and process evaluation, and may find it useful to partner with research organisations to do this robustly. 
• A whole-system approach to wellbeing should be considered alongside interventions . This includes a focus on the whole employment experience, including element such as workload, autonomy, employee voice and management processes.

Our eight elements of positive staff experience web page details the eight elements that are essential for creating, implementing and evaluating an effective staff experience strategy.

The below documents and reports have been influential in shaping thinking and approaches in health and wellbeing across the NHS. These may help you to develop and review your health and wellbeing approach.  

Why workforce wellbeing matters

The evidence base for why workforce wellbeing matters is well established. You might want to refer to the learning from these reports, studies and evidence to build your case for making changes in your organisation: 

• The Francis Inquiry  into Mid Staffordshire NHS Foundation Trust revealed the fatal impact of disconnected and detached staff with poor mental wellbeing and a lack of empathy and  emotion.
• There is well-established evidence base demonstrating that poor wellbeing is correlated with poorer patient outcomes, summarised in the  Healthcare Staff Wellbeing, Burnout, and Patient Safety  systematic review  
• Better staff experience overall is linked to better wellbeing, lower turnover and lower sickness absence, as outlined by  The Kings Fund, 2018 .
• Poor mental health in the NHS equates to £1,794- £2,174 per employee per year, according to HEE’s  Staff and Learners’ Mental Wellbeing Report, 2019 (PDF )
• Institute of employment studies report summary: Presenteeism: A review of current thinking
• Commissioned by The International Public Policy Observatory (IPPO), a rapid evidence review and economic analysis  looks at the financial impact of poor NHS staff mental health and wellbeing, and what can be done to improve it.
• The Chartered Institute of Personnel and Development (CIPD) Health and wellbeing at work, 2022 , annual survey exploring health, wellbeing and absence in UK workplaces
• Economics of mental wellbeing : A prospective study estimating associated productivity costs due to sickness absence from the workplace in Denmark.  This study uses data from Denmark to explore how different levels of mental wellbeing influence productivity costs and to estimate associated productivity loss on a national level.  Take a look at What Works Wellbeing blog with considerations the study’s methodology and key findings, and what the insights mean in the context of workplace wellbeing in the UK.
• Latest research from the University of Southampton has found long shifts combined with poor staffing levels and little choice in working patterns are likely to be behind nurses experiencing burnout and exhaustion .
• The Society of Occupational Medicine (SOM) has produced an evidence-based report calling for a new strategy to tackle burnout.  Burnout in healthcare: risk factors and solutions recommends a series of primary, secondary, and tertiary interventions employers can take, aimed at protecting employees against burnout and supporting those returning from absence to do so safely.  
• The value of Occupational Health and Human Resources in supporting mental health and wellbeing in the workplace is the latest report from Dr Kevin Teoh at the Society of Occupational Medicine and aims to encourage more effective interventions to support employees and colleagues in managing their mental health.  

Health and wellbeing in the NHS workforce

There has been a plethora of research, studies and reports outlining the state of health and wellbeing for the NHS workforce, and making recommendations for change and improvement. Here are three seminal reports exploring wellbeing in the NHS:

• NHS Health Education England NHS staff and learners' mental wellbeing report, February 2019  - This report, led by Commission Chair, Sir Kenneth Pearson, reinforces the importance of promoting and supporting the wellbeing of NHS staff and those learning in NHS settings. The report examines at what the NHS are doing currently, where there is excellence and where the NHS can aspire to excellence. Take a look at our dedicated web page which can help support you to implement some of the recommendations from this report. 
• The Boorman Review, November 2009 (PDF)  - The final report of the independent NHS Health & Well-being Review was published on 23 November 2009. The report reiterates the case for change, and provides a comprehensive set of recommendations for improvement in provision of health and wellbeing across the NHS.
• Thriving at work  - The Stevenson/Farmer review of mental health of employers,  October 2017 Following the request from the Prime Minister at the beginning of 2017, Paul Farmer and Dennis Stevenson undertook an independent review into how employers can better support the mental health of all people currently in employment including those with mental health problems or poor wellbeing to remain in and thrive through work. This extensive report includes recommendations employers can adopt regardless of their workplace type or size. Our dedicated web page can help support you to implement some of the recommendations from the report. 
• Five-year workplace wellness intervention in the NHS, June 2013 , shows improvements in health behaviours, reductions in sickness absence and improvements in job satisfaction and organisational commitment were observed following five years of a workplace wellness intervention for NHS employees. These findings suggest that health-promoting programmes should be embedded within NHS infrastructure.
• The annual  NHS Staff Survey is one of the largest workforce surveys in the world and is carried out every year to improve staff experiences across the NHS.   

Initiatives in practice

There are a broad range of preventative and treatment-based physical and mental health initiatives, although there is no single best approach. 

Read section four of the  IES report : Health and Wellbeing Interventions in Healthcare: A rapid evidence to find evidence specifically relating to interventions from the NHS. 

Below we’ve also curated a set of research studies around common health and wellbeing themes to inform and guide your approach.

Research by the Institute for Employment Studies in 2020 evidenced the benefits of workplace counselling, including: reduced sickness absence, reduced presenteeism and improving retention. Read the  study in full  to find out more, including how workplace counselling can be evaluated and adapted for even greater impact. 

• The National Institute for Health and Care Research (NIHR) has published a summary of their research showing that an intervention to encourage office workers to stand and move reduced their sitting time after one year.
• The National Institute for Health and Care Research (NIHR) has also produced eight research findings addressing key risk factors for poor health in later life and helping you stay healthy as you age.   Some offer reassurance, for example, about the value of exercise or weight management programmes. Others highlight differences in risk between different groups of people. All studies had important and actionable findings.  
• The Work Foundation carried out a systematic literature review examining the breadth of evidence on workplace-based lifestyle interventions, including weight-loss, physical activity, smoking and alcohol. 
• The BMJ's Effectiveness of the Stand More AT (SMArT) Work intervention: cluster randomised controlled trial paper shows how successfully reducing sitting time over the short, medium and longer term resulted in positive changes in work related and psychological health. 
• The Device-measured physical activity and cardiometabolic health: the Prospective Physical Activity, Sitting, and Sleep (ProPASS) consortium study, supported by the British Heart Foundation (BHF) and  published in the  European Heart Journal , is the first to assess how different movement patterns throughout the 24-hour day are linked to heart health. Replacing sitting with as little as a few minutes of moderate exercise a day tangibly improves heart health, according to research from UCL and the University of Sydney. 
• The BMJ's blog Could physical activity counteract the risk of cardiovascular disease risk associated with abdominal obesity? provides a summary of a recently published prospective cohort study exploring joint associations of device-measured physical activity and abdominal obesity with incident cardiovascular disease. 

What is a good job? The What Works Centre for Wellbeing have summarised the range and quality of evidence demonstrating a link between high quality roles and better workforce wellbeing.  Read the full report  to find out more about the evidence relating to each of these elements of job design:

• job security
• social connections
• training and development
• role clarity
• employee voice and workplace culture.

Research Proves Your Brain Needs Breaks, Microsoft, Worklab, 2021 This study of brain wave activity in 2021 confirmed what many people sense from experience, back-to-back virtual meetings are stressful.  The research also points to a simple remedy—short breaks.  The research showed three main takeaways.

• Breaks between meetings allow the brain to “reset,” reducing a cumulative build-up of stress across meetings.
• Back-to-back meetings can decrease your ability to focus and engage.
• Transitioning between meetings can be a source of high stress.

The research also includes strategies/tips for making breaks successful—and beating meeting fatigue

Using quality improvement to deliver a systematic organisational approach to enjoying work in healthcare shares learning from East London NHS Foundation Trust’s programme which supported their colleagues to apply their quality improvement skills to try and understand what matters to their staff and what contributes to good days at work. The programme started in the trust in 2017 with 86 teams, clinical and non-clinical, from the organisation, and is based on the Institute for Healthcare Improvement’s (IHI) joy in work framework which provides an evidence-based approach to tackling the complex issue of staff experience using improvement science.

Enjoying Work Collaborative  38 teams from 16 healthcare organisations in England and Wales took part in this quality improvement (QI) programme in 2021-22 to understand and improve the experience, wellbeing and joy of staff. The results showed an improvement across the three outcome measures: 

• A 50 per cent improvement in the percentage of people who have enjoyed being at work frequently
• A 41 per cent improvement in the percentage of people who are experiencing no symptoms of burnout 
• An 38 per cent improvement in the percentage of people who are extremely likely to recommend their team as a place to work

Mental health

• ACAS Work adjustments for mental health: a review of the evidence and guidance on making workplace adjustments for employees with mental health conditions.
• Mental health burden for NHS healthcare staff during the COVID-19 pandemic: First results of a longitudinal survey.   This study was conducted and performed in collaboration between psychological researchers at the University of Sheffield and NHS staff working at the Sheffield Teaching Hospital NHS Trust. By understanding who may be most at risk of severe mental health difficulties during the COVID-19 pandemic, preventative measures could be implemented to develop a more robust workforce when future pandemics arise.  Read the study for more information.
• What works to improve mental wellbeing in the UK: insights from WEMWBS . This review looked at 209 studies using the WEMWBS scales to evaluate the effects of interventions delivered across public, voluntary and private sectors. The broad themes for the studies were psychological, social, arts/culture and health promotion, with over half reporting statistically significant improvements in mental wellbeing post intervention.
• What could make a difference to the mental health of UK doctors?  A new study commissioned and funded by the Louise Tebboth Foundation has revealed that UK doctors are at greater risk of work-related stress, burnout and depression and anxiety than the general population. The report, published in conjunction with the Society for Occupational Medicine, finds the incidence of mental health problems among doctors is increasing  alongside growing demands and diminishing resources in the healthcare sector.

Mental Health First Aid

The evidence base on the effectiveness of Mental Health First Aid in organisations is mixed and conflicting. 

• The Health and Safety Executive (HSE) research outlines that there is little evidence for the impact of MHFA on users of the service, but does have an impact on those trained as mental health first aiders. 
• The Institute of Employment Studies (IES) point out the mixed evidence and caution against using MHFA as a solo approach, and that many other training and awareness raising approaches are effective in workplaces.
• The Institute for Occupational Safety and Health  (IOSH) examined international examples of MHFA in contrast to other mental health awareness or intervention approaches. The research outlines the potential benefits and pitfalls of implementing MHFA in workplaces, and makes practical recommendations for organisations. As an output of this study, IOSH have developed practical tools for organisations to improve the implementation of MHFA alongside other approaches, including: -  Mental health first aiders: workplace considerations -  Mental health in the workplace: benchmarking questions  

A realist informed mixed-methods evaluation of Schwartz Center Rounds® in England, 2018  - this report highlights that Schwartz Rounds offer a safe, reflective space for staff to share stories with their peers about their work and its impact on them. Interestingly, the report shows that there was no change in staff engagement scores of participants, but poor psychological wellbeing reduced significantly. Take a look at the report in more detail for the full findings.

Workplace Health Expert Committee (WHEC) is a scientific and medical expert committee whose purpose is to consider the evidence linking workplace hazards to ill health.  WHEC's reports cover evidence reviews and position papers giving their independent expert opinion on key topics for workplace health.

• Work-related suicide: An evidence review, 2022

Organisational culture

Evidence from the What Works Centre for Wellbeing highlights the importance of organisational culture in achieving improved wellbeing outcomes. Read the report  What works for health and wellbeing in the workplace?  to find out more.

People management

Research undertaken by the University of Central Lancashire (UCLan) and commissioned by CMP and the Healthcare People Management Association (HPMA) provides detailed analysis of the position of state of employment relations in the NHS across the UK in the aftermath of the COVID-19 pandemic and into a 'new normal' for people management.

Effective measures

The Society of Occupational Medicine (SOM) published their Organisational interventions to support staff wellbeing: Case studies and learnings from the NHS report.  It looks at the most effective measures to support staff wellbeing in the NHS.  The report was carried out by researchers working across Birkbeck, University of London, University of Nottingham and University of Sheffield, and includes current literature reviews, practitioner interviews, and in-depth case studies on this topic. 

Read our summary of the Society of Occupational Medicine's report on effective interventions to support staff wellbeing in the NHS.

Related content

Staff experience in the NHS

This page details why staff experience is so crucial, and what employers can do to bring the NHS People Promise to life.

15 April 2024

Staff experience impact 2023/24

A visual summary of our staff experience programme highlights, feedback and impact for 2023/24.

28 March 2024

The importance of partnership working on health, safety and wellbeing

Guidance and information on the importance of effective partnership working on health, safety and wellbeing at a local organisational level.

27 March 2024

NHS ConfedExpo 2024

Join us at Manchester Central as we and NHS England unite health and care leaders and their teams at one of the biggest health and care conferences.

12 June 2024 08:30 - 13 June 2024 16:45 GMT

Britain Is Leaving the U.S. Gender-Medicine Debate Behind

The Cass report challenges the scientific basis of medical transition for minors.

Listen to this article

Produced by ElevenLabs and News Over Audio (NOA) using AI narration.

In a world without partisan politics, the Cass report on youth gender medicine would prompt serious reflection from American trans-rights activists, their supporters in the media, and the doctors and institutions offering hormonal and surgical treatments to minors. At the request of the English National Health Service, the senior pediatrician Hilary Cass has completed the most thorough consideration yet of this field, and her report calmly and carefully demolishes many common activist tropes. Puberty blockers do have side effects, Cass found. The evidence base for widely used treatments is “ shaky .” Their safety and effectiveness are not settled science.

The report drew on extensive interviews with doctors, parents, and young people, as well as on a series of new, systematic literature reviews. Its publication marks a decisive turn away from the affirmative model of treatment, in line with similar moves in other European countries. What Cass’s final document finds, largely, is an absence . “The reality is that we have no good evidence on the long-term outcomes of interventions to manage gender-related distress,” Cass writes. We also don’t have strong evidence that social transitioning, such as changing names or pronouns, affects adolescents’ mental-health outcomes (either positively or negatively). We don’t have strong evidence that puberty blockers are merely a pause button, or that their benefits outweigh their downsides, or that they are lifesaving care in the sense that they prevent suicides. We don’t know why the number of children turning up at gender clinics rose so dramatically during the 2010s, or why the demographics of those children changed from a majority of biological males to a majority of biological females. Neither “born that way” nor “it’s all social contagion” captures the complexity of the picture, Cass writes.

What Cass does feel confident in saying is this: When it comes to alleviating gender-related distress, “for the majority of young people, a medical pathway may not be the best way to achieve this.” That conclusion will now inform the creation of new state-provided services in England. These will attempt to consider patients more holistically, acknowledging that their gender distress might be part of a picture that also includes anxiety, autism, obsessive-compulsive disorder, eating disorders, or past trauma.

This is a million miles away from prominent American medical groups’ recommendation to simply affirm an adolescent’s stated gender—and from common practice at American gender clinics. For example, a Reuters investigation found that, of 18 U.S. clinics surveyed, none conducted the lengthy psychological assessments used by Dutch researchers who pioneered the use of medical gender treatments in adolescents; some clinics prescribe puberty blockers or hormones during a patient’s first visit. Under pressure from its members, the American Academy of Pediatrics last year commissioned its own evidence review, which is still in progress. But at the same time, the group restated its 2018 commitment to the medical model.

The Cass report’s findings also contradict the prevailing wisdom at many media outlets, some of which have uncritically repeated advocacy groups’ talking points. In an extreme example recently noted by the writer Jesse Singal, CNN seems to have a verbal formula , repeated across multiple stories, to assure its audience that “gender-affirming care is medically necessary, evidence-based care.” On a variety of platforms, prominent liberal commentators have presented growing concerns about the use of puberty blockers as an ill-informed moral panic.

Read: The power struggle over transgender students

The truth is that, although American medical groups have indeed reached a consensus about the benefits of youth gender medicine, doctors with direct experience in the field are divided, particularly outside the United States. “Clinicians who have spent many years working in gender clinics have drawn very different conclusions from their clinical experience about the best way to support young people with gender-related distress,” Cass writes. Her report is a challenge to the latest standards of care from the U.S.-based World Professional Association for Transgender Health, which declined to institute minimum-age limits for surgery. The literature review included with her report is notably brutal about these guidelines, which are highly influential in youth gender medicine in America and around the world—but which, according to Cass, “lack developmental rigour.”

The crux of the report is that the ambitions of youth gender medicine outstripped the evidence—or, as Cass puts it, that doctors at the U.K. clinic whose practices she was examining, although well-meaning, “developed a fundamentally different philosophy and approach compared to other paediatric and mental health services.” How, she asks, did the medical pathway of puberty blockers and then cross-sex hormones—a treatment based on a single Dutch study in the 1990s—spread around the world so quickly and decisively? Why didn’t clinicians seek out more studies to confirm or disprove its safety and utility earlier? And what should child gender services look like now?

The answer to those first two questions is the same. Medicalized gender treatments for minors became wrapped up with a push for wider social acceptance for transgender people, something that was presented as the “ next frontier in civil rights,” as Time magazine once described it. Any questions about such care were therefore read as stemming from transphobic hostility, full stop. And when those questions kept coming anyway, right-wing politicians and anti-woke comedians piled on, sensing an area where left-wing intellectuals were out of touch with popular opinion. In turn, that allowed misgivings to be dismissed as “ fascism ,” even though, as the British journalist Sarah Ditum has written, “it is not damning of feminists that they are on the same page as Vladimir Putin about there being two sexes. That is just how many sexes there are.”

In Britain, multiple clinicians working at the Gender Identity and Development Service (GIDS) at the Tavistock and Portman Trust, the central provider of youth gender medicine, tried to raise their concerns, only to have their fears dismissed as hostility toward trans people. Even those who stayed within the service have spoken about pressure from charities and lobbying groups to push children toward a medical pathway. As Cass notes, “There are few other areas of healthcare where professionals are so afraid to openly discuss their views, where people are vilified on social media, and where name-calling echoes the worst bullying behaviour.”

This hostile climate has hampered attempts to collect robust data about real-world outcomes. The report’s research team at the University of York tried to follow up on 9,000 former GIDS patients but was informed by National Health Service authorities in England in January that “despite efforts to encourage the participation of the NHS gender clinics, the necessary cooperation had not been forthcoming.” Cass has since wondered aloud if this decision was “ideologically driven,” and she recommends that the clinics be “directed to comply” with her team’s request for data.

As I have written before, the intense polarization of the past few years around gender appears to be receding in Britain. Kamran Abbasi, the editor in chief of The BMJ , the country’s foremost medical journal, wrote an editorial praising the report and echoing its conclusion that many “studies in gender medicine fall woefully short in terms of methodological rigour.” The country’s left-wing Labour Party has already accepted that feminist concerns about gender self-identification are legitimate, and its health spokesperson, Wes Streeting, welcomed the Cass report as soon as it was published. (The ruling Conservatives have also enthusiastically embraced its conclusions, and the former health secretary Sajid Javid pushed through a law change that made its data collection possible.)  The LGBTQ charity Stonewall responded to the report by saying that some of its recommendations could be “positive,” and urged politicians to read it. Even Mermaids, the charity most associated with pushing the affirmative model in Britain, offered only lukewarm criticism that more gatekeeping could further increase waiting times.

The Cass report is a model for the treatment of fiercely debated social issues: nuanced, empathetic, evidence-based. It has taken a political debate and returned it to the realm of provable facts. And, unlike American medical groups, its author appears to have made a real effort to listen to people with opposing views, and attempted to reconcile their very different experiences of this topic. “I have spoken to transgender adults who are leading positive and successful lives, and feeling empowered by having made the decision to transition,” she writes in the introduction. “I have spoken to people who have detransitioned, some of whom deeply regret their earlier decisions.” What a difference from America, where detransitioners are routinely dismissed as Republican pawns and where even researchers who are trans themselves get pushback for investigating transition-related regret—and where red states have passed laws restricting care even for transgender adults, or have proposed removing civil-rights protections from them.

Daniela Valdes and Kinnon McKinnon: Take detransitioners seriously

Has the Cass report gotten everything right? The methodology and conclusions of its research should be open to challenge and critique, as with any other study. But it is undoubtedly the work of serious people who have treated a delicate subject seriously. If you still think that concerns about child medical transition are nothing more than a moral panic, then I have a question: What evidence would change your mind?

• - Google Chrome

Intended for healthcare professionals

• Access provided by Google Indexer
• My email alerts
• BMA member login
• Username * Password * Forgot your log in details? Need to activate BMA Member Log In Log in via OpenAthens Log in via your institution

Search form

• Advanced search
• Search responses
• Search blogs
• News & Views
• NHS hospital capacity...

NHS hospital capacity during covid-19: overstretched staff, space, systems, and stuff

• Related content
• Peer review
• Kevin J Fong , consultant in anaesthesia 1 2 ,
• Charlotte Summers , professor in intensive care medicine 3 ,
• Tim M Cook , professor in intensive care medicine 4 5
• 1 University College London Hospitals NHS Trust, London, UK
• 2 Department of Science, Technology, Engineering and Public Policy, University College London, UK
• 3 Victor Phillip Dahdaleh Heart and Lung Research Institute, University of Cambridge, Cambridge, UK
• 4 Royal United Hospitals Foundation Trust, Bath, UK
• 5 School of Medicine, University of Bristol, Bristol, UK
• Correspondence to: K J Fong kevin.fong{at}nhs.net

Kevin Fong, Charlotte Summers, and Tim Cook unpick arguments that the NHS was not overwhelmed by covid-19, highlighting its legacy effects on healthcare and lessons for future health crises

During the UK’s covid-19 inquiry we have heard that “there was an inbuilt reluctance to accept that it was possible to get to a point where the NHS was overwhelmed” and that NHS capacity was regarded as “elastic.” 1 The question of whether the NHS was overwhelmed during the covid-19 pandemic has become an important point of debate. Some commentators continue to suggest that the NHS prepared for a surge in admissions that did not threaten NHS capacity and unnecessarily suspended services. 2 3 4

These comments either misunderstand or misrepresent the nature of the threat, the NHS response to covid-19, and the concept of capacity in healthcare services. NHS capacity is a complex property of a complex sociotechnical system; it cannot be described through simple numerical counts of bed spaces, occupancy rates, equipment, and staff. In particular, the workforce comprises the social component of this system and capacity cannot be assessed without reference to their experience.

The challenge of planning within this framework is described in shorthand as the four S’s: space, staff, systems, and stuff. 5 The NHS entered the pandemic after a long period of substantial financial constraint, resulting in eroded operational resilience. Analysis of the four S’s shows this contributed to many intensive care units (ICUs) in the UK experiencing overwhelming pressure during the pandemic, creating harms for both patients and staff.

Intensive care beds: pre-pandemic resources and staffing

ICUs provide specialist care to patients with immediate life threatening illness or injury leading to single or multiple organ dysfunction. The term “intensive care bed” does not describe an item of furniture but rather a specialised location, a suite of technology, and the specialist staff who use it continuously to try to support and maintain a patient’s life, commonly through lung ventilation, renal replacement, prolonged sedation, and other therapeutic interventions. National standards specify that each mechanically ventilated patient requires one dedicated specialist ICU nurse, while each ICU consultant should care for no more than 12 patients. 6

For the past decade, NHS investment has not kept pace with other European countries. The Health Foundation estimates a £40bn shortfall in healthcare funding each year. 7 The UK also lags in ICU investment: with 7.3 ICU beds per 100 000 people in 2022, roughly half the average number per capita of many members of the Organisation for Economic Cooperation and Development. 8

High levels of ICU bed occupancy and strain are associated with increased hospital mortality. 9 The National Audit Office reports that hospitals with average bed occupancy above 85% can expect regular bed shortages and increased numbers of healthcare acquired infections, with bed crises becoming regular above 90% occupancy. 10 Occupancy of NHS general and acute beds has climbed steadily since 2011, including from 86% to above 90% between 2016 and 2020. 11 English ICU occupancy before the pandemic was 75-88% despite bed numbers increasing. It was in this state of provision that the NHS met the covid-19 pandemic.

Preparing ICUs for the pandemic

The NHS workforce crisis, which predated the pandemic, and limited ICU bed availability made preparations to expand critical care services difficult. On 30 January 2020, the day the World Health Organization declared covid-19 to be a public health emergency of international concern, there were 3654 adult critical care beds in acute hospitals in England, of which 3044 (83%) were occupied. 12

Importantly, not all these beds were equipped to provide mechanical ventilation, which the sickest patients with covid-19 would need. Further, not all the beds were staffed, with many ICU posts unfilled, 13 further reducing the ability to expand ICU bed capacity. 14

Rapid expansion was achieved nevertheless by the end of April 2020—to close to 6000 beds—by creating ad hoc ICU beds in repurposed operating theatres and wards. However, these were far from equivalent to standard ICU provision in terms of skilled staff, equipment, or supporting infrastructure; they met the remit in terms of space but not stuff, staff, or systems. As an example, many used mechanical ventilators designed for use in anaesthesia rather than intensive care. Use of such ventilators for supporting patients with covid-19 was associated with an increased risk of patient harm, including death. 15

Hospital staff who did not ordinarily specialise or work in ICU were redeployed to support delivery of ICU care. As patient numbers increased, national guidance changed to permit one ICU nurse to oversee the care of six ventilated patients and one ICU specialist doctor to supervise the care of 60 patients. 16

Diluted ratios left staff unable to provide the same specialist care and vigilance that one-to-one nursing affords. Although ICU beds increased to roughly 6000, the newly created capacity was far less capable than standard ICU provision, substantially increasing ICU strain. However, there was no choice but to create this additional capacity as a temporary buffer. During the pandemic, a multicentre observational cohort study of more than 130 000 ICU admissions, across 207 hospitals, found that unprecedented strain on ICU capacity was significantly associated with higher acute hospital mortality. 17

The pandemic spread asymmetrically across the country, with infections focused initially in London, then in other densely populated cities, before disseminating across regions. This is crucial to understanding the overwhelming strain that individual ICUs experienced at different times, as the infection rolled across the country. The Nightingale facility in London: a proposed ad hoc field hospital that initially promised a massive expansion in ICU capacity, ultimately proved impossible to staff at scale. 18 Elsewhere, Nightingale ICUs either did not open or were repurposed, as it became apparent that the provision of space was not a useful solution in the absence of skilled staff. While pockets of spare ICU capacity did initially exist, accessing these at scale was not practical because of the logistic challenges and clinical risks associated with transferring critically ill patients. 19

Surge pressure and risks

While the number of patients in ICU during spring 2020 peaked at 4014, 20 seemingly well below the expanded national ICU capacity, these data disguise a more complex picture. Although the UK’s entire expanded ICU capacity was not exceeded during the first surge, the usual and expanded capacity of many units was exhausted at different times. 17 21 Many hospitals experienced shortages of staff, medicines, equipment, and other essential supplies, including oxygen. In one hospital, oxygen supply problems were so severe that it was forced to declare a major incident and transfer patients to neighbouring hospitals. 22

Although much discussion focuses on spring 2020, the wave experienced from December 2020 to February 2021 brought an even larger surge. Official data show an astonishing peak occupancy of 5702 ICU beds in England during this period. 20

Even this figure disguises the gravity of the situation. Advanced respiratory therapies such as continuous positive pressure ventilation are—for patient safety—normally delivered in an ICU or other specialised setting. During the pandemic, many thousands of patients received such treatments outside ICU, cared for by medical teams with even more sparse staffing. 23 Thus, at the peak of the pandemic, the total number of critically ill patients outstripped ICU capacity.

Transferring critically ill patients between units to ease capacity pressures (capacity transfers) is a substantial logistic challenge, requiring specialist staff and equipment. A multicentre review found that serious adverse events occur in up to 8.9% of critical care transfers. 19 Because of this they are avoided wherever possible. But with entire regions operating at the limit of their expanded capacity they became necessary at scale, including over large distances, despite the risk. Since no such transfers are necessary when there is adequate capacity, their number is a marker of system strain. In the winter before the pandemic, from December 2019 to February 2020, only 68 capacity transfers took place, but between December 2020 and February 2021, this increased 30-fold to 2152. 24

Covid-19 and surgical backlogs

Providing care in these circumstances was possible only through the extraordinary efforts of staff across the NHS. Redeploying staff to support ICU specialists removed them from their usual specialty roles. Thus, a reduction in non-urgent NHS care was an inevitable consequence of covid-19-related pressure—the greater the covid-19 surge, the greater the need to pause other clinical activity.

Elective operations were initially suspended to enable preparation for the anticipated surge, freeing space for building ad hoc ICUs and training staff in their new roles. As the pandemic progressed, continued redeployment of ward, theatres, and anaesthetic staff; high rates of staff sickness; and the use of operating theatre complexes and surgical wards to accommodate covid-19 patients continued to limit other clinical activity.

The effect of covid-19 surges on anaesthetic and surgical procedures was best illustrated by a survey of UK hospitals in January 2021 by the Royal College of Anaesthetists: 53% reported that covid-19 pressures substantially prevented them from providing anaesthetic services, 38% described anaesthetic care as hampered, and only 9% were able to provide close to normal services. 25 The survey specifically questioned which of the four S’s limited capacity, with staffing the predominant factor. More than 2000 anaesthetists were unavailable for theatre work, with 75% redeployed to ICU. Forty two per cent of UK NHS operating theatres were closed, with throughput almost halved in those remaining open. Routine adult non-cancer surgery ran at 33% of pre-pandemic levels, cancer surgery at 61%, and paediatric surgery at 32%. Overall, more than half of surgical activity was lost—close to 10 000 operations every day. 25

The strain on ICU persisted well into 2021. Critically ill covid-19 patients often do not develop the need for intensive care until two weeks after infection, after which they may spend many weeks in ICU. It was not until 6 March 2021 that ICU occupancy consistently fell below 4000 in England: still higher than total ICU capacity in early 2020.

Welfare and mental health of ICU staff

Patient facing healthcare workers had, compared with their local population, an up to fourfold increased risk of SARS-CoV-2 infection, 26 27 28 29 a twofold increased risk of hospital admission, 30 and a significantly increased risk of death. 31 In one central London hospital, almost half of healthcare workers became infected over a three week period. 28

Although our focus is on ICU, the greatest risk of infection, harm, and death was among staff working outside ICU, 32 particularly porters, domestic staff, health support workers, and more junior nurses and doctors, 29 33 and disproportionately affected staff of non-white ethnicity and first generation immigrants. 34

Over the course of 2020-21, more than one in three patients with covid-19 admitted to ICU died there 35 —a much higher death rate than typically experienced even by seasoned ICU workers. Importantly, covid-19 deaths were not restricted to ICU, with many occurring in medical wards and care homes: in the first wave, six of every seven hospital deaths and nine of every 10 deaths overall occurred outside ICU. 36

The psychological effect of these experiences on staff was profound. In January 2021, a study of the mental health of staff working in ICU during the pandemic found that almost half of staff reported symptoms consistent with severe depression (52%) and severe anxiety (44%). In addition, 47% of surveyed staff reported symptoms consistent with probable post-traumatic stress disorder, a rate comparable with that seen in British military veterans deployed in combat roles during the Afghanistan war. 37 Mental health disorder is known to correlate with impairment in the performance of daily activities, including professional tasks. The survey of ICU staff included responses to the work and social adjustment scale (WSAS) questionnaire, a standardised measure of impairment in functioning. At the peak of the surge of January 2021, 69.1% of staff working in ICU met threshold criteria for moderate (27.9%) or severe (41.2%) functional impairment, further highlighting the hazards—to patients and staff—of operating under conditions of severe strain.

The March 2023 NHS Staff Survey showed that 45% of 636 348 responding staff had felt unwell because of work related stress, 38 suggesting an enduring effect on staff wellbeing. The current problems with staff recruitment and retention are unsurprising and well documented. 13

Learning from the crisis

Numerical tallies summarising the availability of physical resources—bed spaces and equipment—provide useful data. But without proper consideration and monitoring of the workforce engaged in delivering care, neither capacity nor the danger of it becoming overwhelmed can be estimated properly.

During the covid-19 pandemic the NHS’s usual ICU capacity was substantially exceeded, and this was accompanied by negative effects on patient care and the physical and mental health of NHS staff. The difficult experiences of ICU teams during the pandemic were mirrored by healthcare workers throughout the NHS.

The NHS’s pre-existing workforce crisis and strained bed capacity in the years preceding the pandemic impaired the ability to adapt and respond to the crisis. Nevertheless, the rapid procurement and distribution of equipment, repurposing of existing infrastructure and re-structuring and delivery of care by national, regional, and frontline teams represented an extraordinary achievement—one that we should recognise and learn from. However, the expansion and reshaping of some services was necessarily accompanied by the contraction of others: remodelling rather than elasticity.

Helen McNamara, deputy cabinet secretary in the UK during 2020-21, stated to the UK covid-19 inquiry that she came to understand “what was meant by NHS capacity being elastic was the capacity of people working in the NHS to work themselves into the ground to keep people alive,” and that “in retrospect the conversations were all about the buildings and the beds and not the people that would be need[ed] to staff them.” 1

If we wish to learn the lessons from the pandemic and appropriately prepare for future threats, it is essential that we base our analysis of the UK’s response to covid-19 on an accurate account of the pressures experienced and their consequences. The threat from covid-19 for NHS hospitals has receded but not entirely disappeared. Pandemics will inevitably be more frequent in the future, and other NHS crises may also arise. 39 We should celebrate our many successes but at the same time must reflect in detail on the areas in which we failed. In particular, we should consider how capacity within healthcare systems is measured, and what mechanisms are required to accurately assess the limits of that capacity so that we minimise the future likelihood of once again breaching the elastic limit of our healthcare staff and system.

Key messages

Healthcare system capacity is complex and cannot be described through simple numerical counts of bed spaces, occupancy rates, equipment, and staff

Intensive care units (ICUs) in the UK experienced overwhelming pressure during the covid-19 pandemic despite substantial expansion

The necessary redeployment of staff to expand ICU capacity prevented continuation of other routine hospital services

The healthcare staff who responded faced physical risk and many also experienced psychological harm, exacerbating a pre-existing workforce crisis

Future pandemic responses should consider how to accurately assess the limits of healthcare capacity and protect staff wellbeing

Acknowledgments

We thank Michael Toolan, Sarah El-Sheikha, Roopa McCrossan, Kate Kanga, Tristan Caulfield, and Danny Wong for their work in delivering much of the workforce survey data cited in this article, and their ongoing work in the field of NHS workforce wellbeing.

Contributors and sources: During the pandemic KJF served as national clinical adviser in emergency preparedness, resilience, and response for the covid-19 incident, CS was involved at local, regional, and national level with the NHS critical care response and along with TMC was an author of guidelines on the covid-19 hub run by the four substantive anaesthesia and intensive care organisations. TMC had a role in research examining both healthcare worker safety and the spread of SARS-CoV-2 infection during medical procedures. All three worked with frontline operational teams and at strategic level during the covid-19 pandemic. All authors contributed to writing the article and approved the final version.

Competing interests: We have read and understood BMJ policy on declaration of interests and have the following interests to declare: KJF is currently a Wellcome Trust Innovation and Engagement Fellow and freelance broadcaster and writer.

Provenance and peer review: Not commissioned; externally peer reviewed.

• ↵ Macnamara H. INQ000273841—witness statement of Helen MacNamara, dated 09/10/2023. UK COVID-19 Inquiry, 2023 . https://covid19.public-inquiry.uk/documents/inq000273841-witness-statement-of-helen-macnamara-dated-09-10-2023/
• ↵ Why health-care services are in chaos everywhere. Economist 2023 Jan 15. https://www.economist.com/finance-and-economics/2023/01/15/why-health-care-services-are-in-chaos-everywhere
• ↵ Nelson F. Boris Johnson was right to say the NHS was not overwhelmed. Spectator 2023 Oct 21. https://www.spectator.co.uk/article/boris-johnson-was-right-to-say-the-nhs-was-not-overwhelmed/
• ↵ Sumption J. Little by little the truth of lockdown is being admitted: it was a disaster. Times 2022 Aug 28. https://www.thetimes.co.uk/article/little-by-little-the-truth-of-lockdown-is-being-admitted-it-was-a-disaster-5b5lrlgwk#
• ↵ Gabriel GFJ. Pandemic planning and critical care. In: Gough C, Cook TM, Nolan JP, ed. Challenging concepts in critical care. OUP, 2020.
• ↵ Faculty of Intensive Care Medicine and Intensive Care Society. Guidelines for the provision of intensive care services. Version 2.1. 2022. https://www.ficm.ac.uk/standardssafetyguidelinesstandards/guidelines-for-the-provision-of-intensive-care-services
• ↵ Rebolledo IC. How does UK health spending compare across Europe over the past decade? 2022. https://www.health.org.uk/news-and-comment/charts-and-infographics/how-does-uk-health-spending-compare-across-europe-over-the-past-decade .
• ↵ British Medical Association. NHS hospital beds data analysis. 2022. https://www.bma.org.uk/advice-and-support/nhs-delivery-and-workforce/pressures/nhs-hospital-beds-data-analysis2023 .
• Wilcox ME ,
• Harrison DA ,
• ↵ NICE. Emergency and acute medical care in over 16s: service delivery and organisation. NICE Guideline, No 94. National Institute for Health and Care Excellence , 2018 .
• Bosque-Mercader L ,
• Siciliani L
• ↵ NHS England. Winter daily sitrep 2019-20. 2020. https://www.england.nhs.uk/statistics/statistical-work-areas/winter-daily-sitreps/winter-daily-sitrep-2019-20-data/
• ↵ Rolewicz LPB, Lobont C. The NHS workforce in numbers. 2022. https://www.nuffieldtrust.org.uk/resource/the-nhs-workforce-in-numbers2023 .
• ↵ Horsfield C. National critical care nursing workforce survey overview report, 2020. https://www.cc3n.org.uk/uploads/9/8/4/2/98425184/national_critical_care_nursing_workforce_survey_report_july_2020_final_v.._.pdf
• Bottiroli M ,
• Pinciroli R ,
• ↵ NHS England. Coronavirus: principles for increasing the nursing workforce in response to exceptional increased demand in adult critical care. 2020. https://www.cc3n.org.uk/uploads/9/8/4/2/98425184/specialty_guide__critical_care_workforce_v1_25_march.pdf
• ↵ Anandaciva S. Was building the NHS Nightingale hospitals worth the money? King’s Fund, 2021. https://www.kingsfund.org.uk/blog/2021/04/nhs-nightingale-hospitals-worth-money .
• Desmettre T ,
• Capellier G
• ↵ NHS England. Covid-19 hospital activity. 2021. https://www.england.nhs.uk/statistics/statistical-work-areas/covid-19-hospital-activity/
• Greaves PJ ,
• Dall’Ora C ,
• Griffiths P ,
• ↵ Oxygen issues during the COVID-19 pandemic: Independent report by the Healthcare Safety Investigation Branch I2020/022. 2021. https://www.hsib.org.uk/investigations-and-reports/oxygen-issues-during-covid-19-pandemic/oxygen-issues-during-the-covid-19-pandemic/ .
• Thygesen JH ,
• Tomlinson C ,
• Hollings S ,
• Longitudinal Health and Wellbeing COVID-19 National Core Study and the CVD-COVID-UK/COVID-IMPACT Consortium
• ↵ NHS England. Critical care bed capacity and urgent operations cancelled 2019-20 data. 2020. https://www.england.nhs.uk/statistics/statistical-work-areas/critical-care-capacity/critical-care-bed-capacity-and-urgent-operations-cancelled-2019-20-data/
• Kursumovic E ,
• Vindrola-Padros C ,
• Atchison C ,
• Whitaker M ,
• Pouwels KB ,
• Pritchard E ,
• COVID-19 Infection Survey Team
• Houlihan CF ,
• Crick COVID-19 Consortium ,
• SAFER Investigators
• Lumley SF ,
• O’Donnell D ,
• Oxford University Hospitals Staff Testing Group
• Gribben C ,
• ↵ Office of National Statistics. Coronavirus (COVID-19) related deaths by occupation, England and Wales: deaths registered between 9 March and 25 May 2020. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/causesofdeath/bulletins/coronaviruscovid19relateddeathsbyoccupationenglandandwales/deathsregisteredbetween9marchand25may2020
• Kearney LLS ,
• Woodman E ,
• ↵ ICNARC report on COVID-19 in critical care: England, Wales and Northern Ireland. Intensive Care National Audit Research Centre , 2021 .
• Milward J ,
• Spoiala C ,
• ↵ NHS England. NHS Staff Survey 2022. https://www.nhsstaffsurveys.com/results/results-archive/
• Parolari AJ

Cookies on the NHS England website

We’ve put some small files called cookies on your device to make our site work.

We’d also like to use analytics cookies. These send information about how our site is used to a service called Google Analytics. We use this information to improve our site.

Let us know if this is OK. We’ll use a cookie to save your choice. You can  read more about our cookies before you choose.

Change my preferences I'm OK with analytics cookies

Case studies

Find out how the NHS, local councils, the voluntary sector, social care providers and other partners are joining up to integrate care – helping people stay well and independent for longer.

How partnership working in Sefton is creating a person-centred approach to hospital discharge

Pre-surgery Waiting Well programme plays crucial role in patient recovery

Somerset's Complex Care Team

Improving support for people with frailty through Integrated Neighbourhood Teams

Working together to improve health in Fleetwood

Derbyshire Integrated Neighbourhood Team reduces ambulance call outs and hospital stays

• How people’s lived experience is improving health and care services in the North East and North Cumbria
• Collaborative working transforms the lives of people with a learning disability, autism or both in Leicester, Leicestershire and Rutland Integrated Care System
• Surrey Heartlands Integrated Care System (ICS) tackles workforce challenges through partnership working and talent strategy
• Norfolk and Waveney Community Voices – the power of shared insight across partners in an integrated care system
• Artificial intelligence helping to speed up skin cancer diagnosis in Leicester, Leicestershire, and Rutland integrated care system
• 20,000 plus people avoid hospital admission in Birmingham thanks to new health approach
• Warwickshire frailty service keeps half of patients at home after falls
• Working together on South West London’s ‘virtual ward’ reduces length of stay in hospital and eases winter pressures
• Partnership working in Bradford District and Craven helps communities with the cost-of-living crisis
• Partnership working between voluntary, community, faith and social enterprise (VCFSE) sector organisations and ICSs to improve health and care outcomes
• Addressing health inequalities through co-developing the Healthy Eating and Active Lifestyles for Diabetes (HEAL-D) programme
• Implementing a cloud-based productivity monitoring tool to facilitate management of cancer diagnostic pathways in Cheshire and Merseyside
• Developing learning systems in the South West to facilitate sustainable adoption and spread of innovation within ICSs
• Implementing a national innovative programme in the North East and North Cumbria
• Developing an innovation mindset in Mid and South Essex NHS Foundation Trust
• Driving innovation activities and a culture of innovation through the Dorset ICS Innovation Hub
• Developing an enhanced integrated academic health, science and innovation system in Greater Manchester
• Establishing an ICS role to develop a culture of innovation within the local health and care system
• Strengthening local partnerships and driving innovative solutions using innovation hubs
• Extra 500 people with complex health issues are supported by MDT thanks to Population Health Management
• Patients with chronic conditions offered personalised care through population health management
• Forty high-risk people with COPD given help to address wider determinants through PHM
• Using population health management to target COPD support for low, medium and high risk groups in Dorset
• Primary care network offers extra support for high-risk group with heart failure and social isolation
• Surrey partners identify thousands on four or more waiting lists
• Joined up GPs and council teams find frail ‘frequent flyers’ who need help with bins
• Bowel cancer screening increased thanks to Oxford NHS and partners joint working
• Older people living with frailty ‘virtual ward’ keeps them well at home and out of hospital

• Organisational Development Matters
• Case studies in OD

Case study template

NHS Education for Scotland (NES)

This template can be used to complete your case study and that will provide us with all the information we need to publish it on the organisational matters zone. Your name and board will be kept completely confidential.

Publisher: NHS Education for Scotland (NES)

Type: Document

Audience: General audience

   Download (22 KB)