The forgotten majority?
A new policy framework for improving
outcomes for people with long-term conditions
Executive summary
The health needs of the population are changing as it ages. This research finds that 25 million people in England are estimated to have one long-term condition and 13.4 million people have two or more. People with long-term conditions account for 50% of GP appointments and 70% of hospital beds1. The number of people out of the labour market due to long-term sickness has increased sharply since 20192.
The cost of long-term conditions and multiple long-term conditions is significant. According to the NHS a person with one condition has been estimated to cost £3000 per year, while for a person with two the figure is double and for three it rises to £8000. On this modelling the overall estimated cost of long-term conditions to health and care services is £115.2 billion3.
Health services, particularly in secondary care have traditionally been designed to deal with patients with a single disease. But for a growing number this is no longer a suitable model of care. Primary care has been at the vanguard of delivering more person centred and whole-person care. But many of the existing policy measures and incentives within it are outdated and aimed at managing single diseases.
Four of the five health systems with the highest estimated rates of people with multiple long-term conditions are in the South West (Cornwall and Isles of Scilly, Somerset, Dorset and Devon) with rates of 27% or more. By contrast health systems in London with younger populations have the lowest rates nationally.
Patients are receiving a mixed experience of care. Recent data from the Patients Association found that only a third of patients said their care had been well coordinated, with a third disagreeing. 40% felt they had been kept informed about what was happening to their care, a third did not. Two in three patients struggled to access at least one of the services they needed4.
The Government’s Major Conditions Strategy presents an opportunity to address this5. However the Strategy comes at a time of immense challenge for the NHS in England. Funding is tight, backlogs of care are growing and the system is struggling to recover from the pandemic. There is understandable scepticism about whether the Strategy in these circumstances can deliver.
To succeed, the Strategy will need to learn from previous approaches and be
appreciative of the context in which it is landing. Our research shows a mixed
picture of performance in efforts to improve care for people with long-term
conditions over the last two decades through either primarily top-down or more
dispersed and bottom-up approaches.
The new Strategy presents an opportunity to execute a more blended model, where Government sets the policy framework of funding, incentives and priorities and Integrated Care Boards (ICBs) working with primary care and other partners then tailor, adapt and deliver for patients locally.
However, the right policy framework will need to see the current outline of the Strategy – where six conditions are prioritised – evolve into a wider long-term and multiple conditions strategy, putting patients rather than specific conditions at the centre6. If the Major Conditions Strategy can genuinely put the patient at the centre and balance national and regional power then it could provide a platform for improved health outcomes.
This report sets out a series of recommendations for delivering this framework as well as new data on the rising challenge of long-term conditions and in particular multiple long-term conditions.
Summary of recommendations
The Government should evolve the final Major Conditions Strategy into a longterm condition and multiple conditions strategy putting patients rather than specific conditions at the centre of the Strategy’s design framework
The Department of Health and Social Care, NHS England and ICBs should use planned reforms for a Shared Outcomes Framework across public health, the NHS and social care to develop a set of outcome metrics that includes improvements in experience, outcomes and care for people with long-term conditions and multiple conditions
The Department of Health and Social Care and NHS England should reform the Quality and Outcomes Framework (QOF) and the Investment and Impact Fund (IIF) to improve the continuity of care for patients with long-term conditions and to better record and improve care for people with multiple conditions. Piloting financial incentives linked to improved patient experience for people with longterm conditions should be considered as part of future GP contract negotiations
The National Institute for Health Research (NIHR) should increase investment in research related to people with multiple long-term conditions. This should include a focus on engaging directly with patients on their preferences and experiences of services
The National Institute for Health and Care Excellence (NICE) should update existing guidelines for managing people with long-term conditions and multiple conditions and ensure new guidelines are digitised and easier to use to support adoption and uptake
NHS England should include an indicator within the NHS ICB Oversight Framework
to track the implementation of the NHS Outpatient Transformation Programme.
ICBs in their annual reports should provide an update on their progress in implementing the programme or explain their inability to do so
The Department of Health and Social Care and NHS England should publish a health literacy action plan as part of the Major Conditions Strategy. This should include plans to capitalise on the opportunities of increased health engagement through the NHS App
National accountability for the Major Conditions Strategy should be overseen at Minister of State level. ICBs should publish local plans with their Integrated Care Partnerships (ICPs) setting out how they plan to deliver the strategy
The Department of Health and Social Care should ensure that the implementation of the NHS Long Term Workforce Plan factors in the complexity of population health need when addressing regional workforce shortages so that areas with higher rates of people with multiple long-term conditions are assigned appropriate numbers of staff – particularly in primary and community care
The Department of Health and Social Care and NHS England should use the Major Conditions Strategy and the upcoming Sinker review to re-balance innovation funding more towards driving the adoption of proven innovations. NHS England’s Adoption Fund should be expanded and used to deliver more co-ordinated care for patients with long-term conditions as part of work to implement the Major Conditions Strategy
1 NHS England. Making the case for the personalised approach. Available at: https://www.england.nhs.uk/blog/
making-the-case-for-the-personalised-approach/ [Last accessed October 2023]
2 Office for National Statistics. Half a million more people are out of the labour force because of long-term
sickness. Available at: https://www.ons.gov.uk/employmentandlabourmarket/peoplenotinwork/
economicinactivity/articles/halfamillionmorepeopleareoutofthelabourforcebecauseoflongtermsickness/
2022-11-10 [Last accessed October 2023]
3 NHS England. The NHS belongs to the people: a call to action. July 2013. Available at: https://www.england.nhs.
uk/wp-content/uploads/2013/07/nhs-belongs.pdf [Last accessed November 2023]
4 Patients Association. Survey of patients paints a mixed picture of experiences. March 2023. Available at:
https://www.patients-association.org.uk/blog/survey-of-patients-paints-a-mixed-picture-of-experiences
[Last accessed October 2023]
5 Department for Health and Social Care. Major conditions strategy: case for change and our strategic
framework. August 2023 Available at: https://www.gov.uk/government/publications/major-conditions-strategycase-for-change-and-our-strategic-framework/major-conditions-strategy-case-for-change-and-our-strategicframework–2 [Last accessed October 2023]
6 Department for Health and Social Care. Major conditions strategy: case for change and our strategic
framework. August 2023. Available at: https://www.gov.uk/government/publications/major-conditionsstrategy-case-for-change-and-our-strategic-framework/major-conditions-strategy-case-for-change-and-ourstrategic-framework–2 [Last accessed October 2023]
This report was commissioned and funded by AbbVie. Full editorial control rests with Future Health.