New research reveals millions of people with long-term conditions feel unsupported by the NHS since the pandemic

• A new report from the Future Health Research Centre and National Voices (Working for patients FINAL) reveals that 5 million people with a long-term condition, such as back pain, arthritis, diabetes or Chronic Obstructive Pulmonary Disease do not feel confident to manage issues caused by their illness or condition
• Over the last five years, coinciding with the start of the COVID-19 pandemic – the numbers of people saying that they are either ‘very’ or ‘fairly’ confident of being able to manage their condition has fallen by 5.4% (from 83.6% in 2019)
• Nearly a third of patients have not had enough support from local services in helping them manage their condition. The study finds that this has risen by over 10% in the last five years from 21.6% in 2019 to 32.2% in 2024
• The research follows recent surveys showing just 21% of people surveyed said they were ‘very’ or ‘quite’ satisfied with the NHS – the lowest satisfaction figure ever recorded. By contrast 59% of people said they were ‘very’ or ‘quite’ dissatisfied – the highest figure on record
• The report Working for patients: how improving the experience of patients with long-term conditions can deliver the Government’s ten year health plan commissioned by AbbVie but independently undertaken by Future Health and National Voices argues that despite 25 million people in England having a long-term condition – and 13.4 million people having more than one – that the experience of patients with long-term conditions is not a sufficient Government and health system priority. Specifically it finds that patient experience surveys are fragmented, under-resourced and too slow to report and act on. The research has been covered in the Independent here
• The report sets out a new action plan for addressing the decline in patient experience for those with long-term conditions. The action plan sets out a new model for engaging with patients with long-term conditions and putting such engagement at the heart of how NHS performance is assessed both nationally within the Department of Health and Social Care and locally within Integrated Care Boards and NHS Trusts
• The report includes a series of proposed metrics for better capturing and acting on the experience of patients with long-term conditions aligned to the Government’s three shifts in the Ten Year Health Plan (moving care from hospital to community; from treatment to prevention; from analogue to digital) and using these measures to judge if the plan is working effectively

New research from Future Health and National Voices, the leading coalition of health and social care charities in England reveals the decline in patient experience for those with long-term conditions in recent years and calls for urgent Government action to address it as part of the forthcoming Ten Year Health Plan.

A long-term condition is a health problem that requires ongoing management over a period of years or decades. It refers to conditions that cannot currently be cured but can seek to be controlled and managed with the use of medication and/or other therapies.[1] Examples of such conditions include high blood pressure, diabetes, rheumatoid arthritis, COPD and visual impairment right through to less common conditions such as cystic fibrosis, Parkinson’s disease, and epilepsy.[2]

25 million people in England are currently estimated to be living with a long-term condition and 13.4 million of these have two or more.[3]

Long-term conditions increase with age. 86% of those aged over 85 have a long-term condition, compared with 58% of over 60s and 14% of under 40s. There is also higher prevalence amongst more deprived groups. People in the poorest social class have a 60% higher prevalence than those in the richest social class and 30% more severity of disease.[4] Across England the higher impact amongst older and more deprived groups sees the prevalence of long-term conditions being nearly 20% higher in parts of the South West and West of England in comparison to London.[5]

People with long-term conditions account for 50% of GP appointments and 70% of hospital beds.[6] As well as having a significant impact on a person’s quality and, possibly length of life, Future Health’s previous research estimated the overall cost of long-term conditions to health and care services as £115.2 billion.[7] There is also a wider economic cost too. The number of working-age adults who are out of the labour market, economically inactive because of long-term sickness has been rising since 2019 and has reached as high as 2.8 million.[8]

The new analysis finds that on most measures the experience of patients with long-term conditions has declined in recent years with millions of people not receiving the care and support they need.

Nearly four in five patients (78%) with a long-term condition said they were either ‘very’ or ‘fairly’ confident of being able to manage their condition. 22% however said they were either ‘not very confident’ or ‘not at all confident’. Nationally this results in up to 5.5 million people not feeling confident to manage issues caused by their illness or condition.

Over the last five years, coinciding with the start of the COVID-19 pandemic – the numbers of people saying that they are either ‘very’ or ‘fairly’ confident of being able to manage their condition has fallen by 5.4% (from 83.6% in 2019). [9]

Nearly a third of patients felt they had not had enough support from local services in helping them manage their condition. 37% said they had had enough support ‘to some extent’, with 30% saying they had ‘definitely’ had enough support. Nationally this means up to 7.5 million people saying they have not had enough help from local services to manage their condition.

The number of people saying that they have not had enough support from local services to help them manage their condition has risen by over 10% in the last five years from 21.6% in 2019 to 32.2% in 2024.

Over 50% of patients, said they had not had a conversation with a healthcare professional to discuss what was important to them in managing their condition. 42% by comparison said they had had such a discussion. Nationally this means up to 12.5 million people not having a conversation about what is important to them in managing their condition with a healthcare professional.

The number of people saying that they had had a conversation with a GP practice professional to discuss what is important to them in managing their condition has risen slightly in the last five years, from 39.5% in 2019 to 41.5% in 2024.

The number of people agreeing a plan with a healthcare professional to help them manage their condition has fallen sharply since 2019. In 2019 60.3% of patients said that they had such a plan, but this has fallen by a quarter in the last five years.

The experience of patients with long-term conditions within the NHS are captured through a wide range of national and local surveys. But measuring and acting on the experience of patients has been de-prioritised in recent years with far greater emphasis placed on improving access to services and waiting times for treatment. This is despite there being extensive evidence that improving patient experience can improve the quality of care and reduce more expensive healthcare use.

The report argues that understanding if patients with long-term conditions are feeling supported to manage their condition, able to access the care in the community they need, able to avoid complications with their condition, alongside their views on the usability and quality digital services, will be integral to assessing whether the three shifts in the Government’s ten year health plan are working in practice.[10]

The report sets out a four part action plan for prioritising the experience of patients with long-term conditions including auditing the array of existing and fragmented patients surveys, building new focused metrics for monitoring how the three shifts are working for patients in practice, improving national and local accountability of patient experience and using new digital and data tools to improve how data is collected, monitored and acted upon.

Richard Sloggett, Programme Director, Future Health and report author said: “This report highlights the challenges millions of patients with long-term conditions are facing in accessing high quality NHS services and support. There is a danger in yet another NHS restructure that the experience of patients is marginalised.

This would be completely counter-productive.

If the Government wants to fix a ‘broken’ system then it needs to prioritise improvements in the day to day experience of the millions of people across the country with long-term conditions. Doing so can improve patient outcomes and reduce more expensive healthcare costs. The Ten Year Health Plan will only succeed if it improves the experience care for these patients, who are the ‘forgotten majority’ of the NHS.”

Sharon Brennan, Director of Policy and External Affairs at National Voices said: “We know people with long-term conditions feel increasingly alone in managing their health needs, often acting as the single co-ordinator of their care while also trying maintain a life that is more than just their health conditions. Long-term conditions also occur at a much higher rate in people from the poorest areas: people experiencing the highest levels of deprivation have a 60% higher prevalence of living with a long-term condition than those in the least deprived.

“If we are to have any chance of creating an NHS that works for all and ensures people feel better supported to manage their own health, the NHS must move from a bean counting culture of data collection and actually seek to understand the experiences of real people using the NHS.

“The 10-year plan, alongside the proposal for new health legislation, creates a once in a lifetime opportunity to get care right for people with long-term conditions but it needs to be brave enough to put patient experience at the centre of these changes and then be prepared to act on what they tell it. This report calls for a national patient experience metric to be embedded at the very top of the NHS, alongside those that look at speed of A&E and secondary care treatment, that will hold the NHS to account on the poor care experiences of people with long-term conditions.”

[1] NHS Data Model and Dictionary. Long Term Physical Health Condition. Available at: https://www.datadictionary.nhs.uk/nhs_business_definitions/long_term_physical_health_condition.html [Last accessed October 2023]

[2] See the following for a full list: NHS. GP Patient Survey. January-April 2023. Available at: https://www.gp-patient.co.uk/surveysandreports [Last accessed October 2023]

[3] Future Health. The forgotten majority? A new policy framework for people with long-term conditions: https://www.futurehealth-research.com/site/wp-content/uploads/2023/12/Long-Term-Conditions-Report-FINAL-DECEMBER-2023.pdf

[4] The Kings Fund. Long-term conditions and multi-morbidity. Available at: https://www.kingsfund.org.uk/projects/time-think-differently/trends-disease-and-disability-long-term-conditions-multi-morbidity [Last accessed October 2023]

[5] Future Health. The forgotten majority? A new policy framework for people with long-term conditions: https://www.futurehealth-research.com/site/wp-content/uploads/2023/12/Long-Term-Conditions-Report-FINAL-DECEMBER-2023.pdf

[6] Future Health. The forgotten majority? A new policy framework for people with long-term conditions: https://www.futurehealth-research.com/site/wp-content/uploads/2023/12/Long-Term-Conditions-Report-FINAL-DECEMBER-2023.pdf

[7] Future Health. The forgotten majority? A new policy framework for people with long-term conditions: https://www.futurehealth-research.com/site/wp-content/uploads/2023/12/Long-Term-Conditions-Report-FINAL-DECEMBER-2023.pdf

[8] https://www.statista.com/statistics/1388245/uk-sick-leave-figures/

[9] https://www.gp-patient.co.uk/

[10] https://www.england.nhs.uk/long-term-plan/