“The Forgotten Majority”: Leading Charities Call for Action to Tackle Long-Term Conditions

This article, the Forgotten Majority Campaign, and associated open letter have been organised and funded by AbbVie. The patient organisations quoted in this article have provided input to the article and open letter but have not been contracted or paid for their contributions or endorsement.

This article is intended for UK parliamentarians, and policy makers, and members of the general public with an interest in health policy.

Long-term conditions (LTCs) such as inflammatory arthritis, psoriasis, epilepsy, and migraine are a long-standing and growing challenge for the NHS.¹ 25 million people in England are currently estimated to be living with an LTC, and 13.4 million of these have two or more, – numbers which will only increase as the UK population ages.^2,3

These are chronic conditions that can have a significant impact on the day-to-day lives of millions of people and their families.¹ They are also placing an increasing strain on the nation’s overstretched healthcare system. Based on General Lifestyle Survey data from 2009, the NHS states that treating people with LTCs accounted for 50% of GP appointments, 70% of total health and care spending, 64% of all hospital outpatient appointments, and 70% of inpatient hospital bed days.¹

But although LTCs are currently stretching NHS capacity,^2,4 approaches are available that may  keep people living well with their condition. If implemented, these could relieve pressure on the health service, improve sustainability, and also deliver better outcomes for patients.

This was the message of a recent open letter, signed by patient advocacy groups, representing millions of patients nationwide and pharmaceutical company, AbbVie.  In a pre-election call to action the letter urges the next government to refocus health strategy to ensure that LTCs form a core part of NHS service delivery, which it argues will better support patients, help reduce pressures on the NHS, and bolster the economy. 

“The NHS was originally created to deal with infectious disease and acute hospital care,” Todd Manning, General Manager at AbbVie explained to PoliticsHome “But whilst the nation’s health needs have evolved, with more and more people living with LTCs, national policy approaches to NHS service delivery haven’t kept pace. We hear from patient communities about the very real impact that this is having on their ability to access the care they need.“

One of the organisations that is supporting the open letter is the Richmond Group, a partnership of 13 health and social care charities. Its Chief Executive, Duleep Allirajah, told PoliticsHome that any incoming government must take urgent steps to improve care pathways for people living with LTCs.

“People tell us their care is too often fragmented, that the agencies involved in their care don’t speak to each other or consider their health needs in the context of their lives,” Allirajah explains. “We need to redesign multimorbidity care so that it is joined up, designed around what patients need, and supports people to live as well and as independently as they can.”

Allirajah ‘s view is shared by Jacob Lant, Chief Executive of National Voices, a  leading coalition of health and social care charities in England. Lant has heard similar stories from charities working with people living with LTCs.

“We hear from our members, over 200 health and care charities, that people with long-term conditions are unable to access the co-ordinated, holistic, and consistent care that they need to live happy and fulfilling lives,” Lant told PoliticsHome. “Patient experience must be centralised in success measurements, and government must work meaningfully with people with lived experience to ensure the best possible outcomes for people living with long-term conditions.”

To provide that joined-up care the letter calls for the development of a Multiple Conditions Strategy that champions coordinated and holistic care across all long-term conditions. That would include requiring every Integrated Care System to publish an action plan for redesigning long-term condition and multimorbidity care, establishing a national long-term condition task force, and making better use of digital tools, such as the NHS App, to support individuals.

The Patients Association, which works with patients to improve health and social care, also believes that moving towards a more strategic and coordinated approach could be transformative for tens of millions of people and their families. Rachel Power, Chief Executive at The Patients Association, told PoliticsHome that the needs of those patients are currently not consistently addressed.

“Many people living with long-term conditions face enormous challenges in their day-to-day lives,” she told us. “Delayed diagnosis, lack of access to care, lack of a named person they can contact when they need care,– all these factors can combine to make their lives harder than they need be.”

In addition to improving the lives of patients, research shows that addressing LTCs could also deliver a major boost to the UK economy. The scale of the economic impact of LTCs is laid bare by recent ONS data that calculated that these conditions account for 104.9 million lost workdays a year and 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.^5,6,7

Manning from AbbVie explains that by changing our approach to the care of LTCs, we can help people to live fulfilling lives outside of hospitals and remain in work.

“Getting care right for people with LTCs  presents a significant opportunity for the next Government to make a positive impact on the lives of millions, he explains. “Making changes at a time of immense pressure on the NHS, won’t be easy, but it must be a priority if we are to secure its sustainability and mitigate the economic repercussions of the growing number of people leaving the workforce due to chronic ill health.”

You can read the Forgotten Majority Open Letter here

UK-ABBV-240172 | June 2024

1. 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.

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

3. Office for National Statistics. Principle projection – UK population in age groups. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationprojections/datasets/tablea21principalprojectionukpopulationinagegroups. Accessed: May 2024.

4. The King’s Fund. Waiting Times for Elective (non-urgent) treatment: referral to treatment (RTT) (May 2024) Available at: https://www.kingsfund.org.uk/insight-and-analysis/data-and-charts/waiting-times-non-urgent-treatment. Accessed June 2024.

5. Office of National Statistics. INAC01 SA: Economic inactivity by reason (seasonally adjusted). Available at: https://www.ons.gov.uk/employmentandlabourmarket/peoplenotinwork/economicinactivity/datasets/economicinactivitybyreasonseasonallyadjustedinac01sa. Accessed May 2024

6. 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.

7. 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

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