Waiting for improvement: person centred care & the future of the NHS 

Lord Darzi’s diagnosis on the NHS is clear: now a renewed focus on managing and improving people’s experiences is needed to improve the prognosis for an ailing system.

Lord Darzi’s review of NHS performance, published today, paints a bleak picture of a health system under severe pressure with many challenges to face down. The report rightly highlights issues associated with underinvestment and undermanagement, as well as noting the scale of problems related to capital resourcing and patient waits.

There are no overnight solutions to these problems, and nor is substantial new funding likely to be forthcoming. The NHS’s response – including in the Department of Health and Social Care’s (DHSC) forthcoming ten-year plan – should focus on improving people’s experiences of care using evidence-based, cost-effective interventions. Central to this should be an attempt to grip the key question: “what can we do better for people who are waiting?”.

Patient experiences of waiting

It was Lord Darzi’s previous review[i], in 2008, that recognised ‘patient experience’ as one of the three dimensions of health service ‘quality’ (together with clinical effectiveness and patient safety) – a definition enshrined in law in 2012[ii].

In the intervening years the potential of that culture shift has not been realised. More than a decade on, public satisfaction with the health service has fallen to the lowest level on record. Waiting times are the number one cause of dissatisfaction and with around 6.4 million people waiting for 7.6 million elective treatments[iii], waiting is now a dominant theme of patients’ experience.

Whilst the elective waiting list dominates headlines, the issue is not just those 7.6 million treatments. Patients experience compound waits as they move between services: for example, waiting for a GP appointment; for initial tests; for a referral to specialists; and for further scans, monitoring, reviews and follow-ups.

One effect of this serial waiting is to disempower patients, creating dependency and, in the face of uncertainty, risking stress, anxiety and depression[^iv]. A second is to increase the use of GP appointments and urgent and emergency care, as people worry about exacerbations of symptoms, lose control of them, live with pain and discomfort, or develop secondary conditions.

Tackling waiting lists and staff shortages are long term challenges that require national interventions underpinned by local knowledge and experience. But there are things the NHS can do now to help people take control of their lives and conditions – things the NHS has already committed to provide, in its 2019 Long Term Plan[^v], but has not yet been able to deliver.

In our manifesto for a person centred NHS[^vi] earlier this year we called for a step change to enable patients’ perspectives to drive service improvement. This should include a focus on understanding and improving the ways in which people experience waits – including using evidence-based and cost-effective interventions.

Improving people’s experiences: tried-and-tested solutions

In this blog series we advocate three proven, low cost, and person centred interventions that should be made available to people with long term physical and mental health conditions while they wait for treatment: education for self management; peer support; and personalised care planning.

Together these interventions support people to get beyond dependency and be active in managing their lives, including their health and the impact of their condition(s). People who are active in this way experience better outcomes, improve their quality of life, and make less potentially avoidable use of healthcare services.

In fact, analysis of 9,000 patients with long term conditions by The Health Foundation^[vii] showed that:

“patients who were most able to manage their health conditions had 38% fewer emergency admissions than the patients who were least able to. They also had 32% fewer attendances at A&E, were 32% less likely to attend A&E with a minor condition that could be better treated elsewhere and had 18% fewer general practice appointments.”

Support for self management is strongly and clearly incorporated into professional guidance for a range of conditions, including asthma, arthritis, and cardiovascular disease, with a robust evidence base supporting its use. Some conditions, especially diabetes, have recognised, standardised educational models for self management. NHS England’s ‘Universal Personalised Care’ plan[viii], published in 2019 shortly after the Long Term Plan, promised to put self management at the heart of a ‘universal’ new model of care.

Yet the Long Term Plan again changed the nature of NHS commissioning. Since the NHS in England first considered mainstreaming self management interventions in 2008, commissioners have changed from being GPs, to Primary Care Trusts, to Clinical Commissioning Groups (CCGs), and to Integrated Care Boards (ICBs) since July 2022.

Last year, Self Management UK, the leading charity that evolved and demonstrated new approaches to self management education, had to close for lack of funds, citing the disruption and failures of NHS commissioning as the key cause[^ix].

The next ten years

Lord Darzi’s review has captured the scale of challenge facing the NHS in 2024. But the impact on public satisfaction with the service and on the experiences of patients and staff have been becoming more and more apparent for some time, as summarised in our recent manifesto[^x].

With the diagnosis made, treatment must now begin . DHSC’s new ten year forward plan will represent an important opportunity to reinforce Lord Darzi’s 2008 commitment to patient experience as a cornerstone of quality and to help the NHS use self management interventions to tackle its key challenges while improving people’s lives. This work should reinforce the value of self management interventions and consider how new commissioning arrangements can promote them universally.

It should learn from Scotland’s experience, where a national drive championed by the Chief Medical Officer has put self management at the core of the ‘Realistic Medicine’ plan[^xi], and has multiplied the number of both NHS providers and community organisations providing a self management approach.

We will contribute to this thinking through three further blogs on the specific interventions mentioned above in the following weeks.

This blog is the first of a four-part series. To continue reading, simply click the links below to navigate to the subsequent articles:

Part two: ‘Supporting self management to improve people’s experiences of waiting for and receiving care‘
Part three: ‘Mainstreaming peer support to improve people’s experiences‘
Part four: ‘The NHS 10-year plan: an overdue opportunity to deliver personalised care plans‘

References

• ⁱ Department of Health. (30 June 2008). High quality care for all: NHS Next Stage Review final report. High quality care for all: NHS Next Stage Review final report – GOV.UK (www.gov.uk)
• ⁱⁱ Health and Social Care Act 2012, s.2. https://www.legislation.gov.uk/ukpga/2012/7/section/2
• ⁱⁱⁱ NHS England. (2024). Consultant-led Referral to Treatment Waiting Times Data 2024-25. https://www.england.nhs.uk/statistics/statistical-work-areas/rtt-waiting-times/rtt-data-2024-25/#Jun24
• ^iv National Voices. (26 October 2020). Patient Noun Adjective: understanding the experience of waiting for care. https://www.nationalvoices.org.uk/publication/patient-noun-adjective-understanding-experience-waiting-care/
• ^v NHS England. (7 January 2019). The NHS Long Term Plan. NHS Long Term Plan » The NHS Long Term Plan
• ^vi Picker. (March 2024). A person centred health service: our vision for the NHS. https://picker.org/research_insights/pickers-nhs-manifesto-our-vision-for-a-person-centred-health-service/
• ^vii Health Foundation, the. (August 2018). Briefing: Reducing emergency admissions: unlocking the potential of people to better manage their long-term conditions. https://www.health.org.uk/publications/reducing-emergency-admissions-unlocking-the-potential-of-people-to-better-manage-their-long-term-conditions?dm_i=4Y2,5TN81,C40CGY,MQSTI,1
• ^viii NHS England. (31 January 2019). Universal Personalised Care: Implementing the Comprehensive Model. NHS England » Universal Personalised Care: Implementing the Comprehensive Model
• ^ix Self Management UK. (31 July 2023). Statement about the future of Self Management UK. https://www.selfmanagementuk.org/who-we-are
• ^x Op cit.
• ^xi Scottish Government. (21 August 2024). Realistic Medicine – Taking Care: Chief Medical Officer for Scotland annual report 2023 to 2024. Realistic Medicine – Taking Care: Chief Medical Officer for Scotland annual report 2023 to 2024 – gov.scot (www.gov.scot)