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The Forgotten Majority campaign is organised and funded by AbbVie. This letter is intended for UK parliamentarians, and policy makers, and members of the general public with an interest in health policy. Letter co-signatories have provided input to the letter but have not been contracted or paid for their endorsement.
Open Letter to the Next Government
[issued 20 May 2024]
25 million people in England are currently estimated to be living with a long-term condition (LTC), and 13.4 million of these have two or more – numbers which will only grow as the UK population ages. 1 , 2 We, the undersigned, write to urge the current and future government to better support this growing, but forgotten majority. Whilst each experience is individual, those living with LTCs commonly face challenges in accessing the joined up and consistent care they need from the healthcare system. 3 LTCs are conditions that cannot be cured but are managed by medicines or other interventions throughout a person’s life. 4 Spanning conditions like inflammatory arthritis, psoriasis, epilepsy, migraine, inflammatory bowel disease, thyroid conditions and age-related macular degeneration, these conditions can have a vast impact on individuals’ lives, NHS capacity and national economic productivity. 4, 5 , 6 Based on General Lifestyle Survey data from 2009 the NHS states LTCs: 7 o Account for 50% of all GP appointments and 70% of inpatient bed days o Make up £7 in every £10 of healthcare expenditure o Cost the NHS £3,000 per person, per year to look after a person with a LTC o Means that patients with two conditions cost approximately £6,000 a year and those with three or more cost approximately £8,000 a year • Lead to 104.9 million lost workdays a year, according to the latest ONS figures 8 • Have resulted in over 2.8 million people being out of work, a number which has increased by 700,000 over the past three years 6,8, 9 When the NHS was founded in 1948, it was created to deal with infectious disease and acute hospital care. 10 But the needs of the UK population have evolved, and more and more people are living with LTCs. This isn’t an issue that only impacts older people - almost 20% of 25–64- year-olds have more than one LTC. 11 At the same time, we know that those living in the most deprived areas are more likely to develop multiple LTCs earlier in life. 11 The impact of LTCs: • Yet, national policy approaches to NHS service delivery have not adapted and continue to focus on a small sub-set of high-profile diseases. Many LTCs are regularly absent from political discourse and clinical services are usually organised around single conditions. Current care models can lead to uncoordinated approaches to care, which can be confusing and risks increasing the management burden for people living with multiple illnesses. We need a step change in the way these conditions are perceived and managed. They should be seen as core to what the NHS does and be at the centre of national health policy and decision-making. To help drive change, the LTC community have come together to set out concrete policy recommendations for action now, and in the next government.
UK-ABBV-240156 | May 2024
Our call to action Whilst we welcome the fact that managing multiple conditions effectively is an area of focus for the Major Conditions Strategy, its proposed remit will not achieve the scale of impact that those living with LTCs, the NHS and economy need it to. We believe it must go much further and reflect the experiences of the whole population by becoming an ambitious Multiple Conditions Strategy. This would see the strategy move from a siloed approach to care and towards a multi-condition approach, championing coordinated and holistic care across all LTCs.
As part of a Multiple Conditions Strategy, the next government should:
➢ Update NHS Planning Guidance to specify that every ICS should publish an action plan for redesigning LTC and multimorbidity care ➢ Establish a national LTC taskforce made-up of cross-departmental political stakeholders, NHS England and the voluntary and community sector (VCS) ➢ Commission each ICS to audit LTC data to understand the current state of data coverage and identify the data gaps in tracking multiple LTCs ➢ Use digital tools, such as the NHS App, to boost health literacy and better support individuals to manage their own conditions, alongside their healthcare professional ➢ Ensure that data on access to services, service delivery and performance and patient outcomes are all used to measure and drive improvements in patient-centred care We believe that these proposals can help reduce NHS capacity challenges, deliver better value for tax-payers, and provide more joined-up care to individuals – which, in-turn, would improve health outcomes and help people return to work.
We are calling for a commitment to refocus health strategy, to ensure that LTCs form a core part of NHS service delivery now and over the course of the next government.
We look forward to working with all stakeholders to deliver this ambition and ensure that the 25 million people living with a long-term condition in England get the care and support they need.
We will look forward to receiving your response.
Yours sincerely,
National Eczema Society
AbbVie
The Patients Association
The Health Creation Alliance
The Neurological Alliance
IBDrelief
The Richmond Group of Charities
National Voices
National Rheumatoid Arthritis Society
The Forgotten Majority campaign is organised and funded by AbbVie. This letter is intended for UK parliamentarians, and policy makers, and members of the general public with an interest in health policy. Letter co-signatories have provided input to the letter but have not been contracted or paid for their endorsement.
UK-ABBV-240156 | May 2024
1 Future Health. The forgotten majority? A new policy framework for people with long-term conditions [Commissioned and funded by AbbVie]. Available at: https://www.futurehealth-research.com/site/wp-content/uploads/2023/12/Long-Term-Conditions-Report-FINAL-DECEMBER-2023.pdf. Accessed May 2024. 2 Office for National Statistics. Principle projection – UK population in age groups. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationprojections/datasets/tablea21principalprojectionukpopulationi nagegroups. Accessed May 2024. 3 Care Quality Commission. The state of health care and adult social care in England 2022/23. Available at: https://www.cqc.org.uk/sites/default/files/2023- 10/20231030_stateofcare2223_print.pdf. Accessed May 2024. 4 Patients Association, Long term conditions. Available at: https://www.patients-association.org.uk/long-term- conditions#:~:text=A%20long%2Dterm%20condition%20is,and%20some%20mental%20health%20conditions. Accessed: April 2024. 5 Watt et al. 2023. Health in 2040: projected patterns of illness in England. The Health Foundation. Available at: https://www.health.org.uk/sites/default/files/upload/publications/2023/Projected%20patterns%20of%20illness%20in%20England_WEB.pdf. Accessed May 2024 6 Office of National Statistics. INAC01 SA: Economic inactivity by reason (seasonally adjusted). Available at: https://www.ons.gov.uk/employmentandlabourmarket/peoplenotinwork/economicinactivity/datasets/economicinactivitybyreasonseasonallyadjustedinac01s a. Accessed May 2024 7 Department of Health. Long Term Conditions Compendium of Information Available at: https://assets.publishing.service.gov.uk/media/5a7c638340f0b62aff6c154e/dh_134486.pdf. Accessed May 2024. 8 ONS, sickness absence in the UK labour market: 2022. April 2023. Available at: https://www.ons.gov.uk/employmentandlabourmarket/peopleinwork/labourproductivity/articles/sicknessabsenceinthelabourmarket/2022. Accessed: May 2024. 9 The Times, Record number out of work due to long-term sickness, 2024. Available at: https://www.thetimes.co.uk/article/record-number-out-of-work-due- to-long-term-sickness-8n8cxd0h3?ilc=timesradio:morefromthetimes. Accessed: May 2024 10 The NHS in England at 75: priorities for the future. Available at: https://www.longtermplan.nhs.uk/wp-content/uploads/2023/06/The-NHS-in-England-at-75- priorities-for-the-future.pdf Accessed: May 2024 11 NIHR, Multiple long-term conditions research. Available at: https://www.nihr.ac.uk/about-us/our-key-priorities/multiple-long-term-conditions.htm. Accessed: May 2024
The Forgotten Majority campaign is organised and funded by AbbVie. This letter is intended for UK parliamentarians, and policy makers, and members of the general public with an interest in health policy. Letter co-signatories have provided input to the letter but have not been contracted or paid for their endorsement.
UK-ABBV-240156 | May 2024
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