As the Taskforce on Multiple Conditions publishes its final report – You only had to ask: what people with multiple conditions say about health equity – we are calling on national decision-makers to act on its powerful and moving findings or face growing health inequality, worse outcomes for people and a growing bill for the Treasury.
The research for the report focused on four areas of England containing communities on low incomes, people from minority ethnic groups and people living in both urban and rural environments. It combines the insights of the professionals and services working in those places with those of the people living there. These areas are: Stockwell in South London, Manningham and Toller in Bradford, Balsall Heath East and Sparkbrook in Birmingham and North Ormesby in Middlesbrough.
At the heart of this work are the powerful and compelling stories of eight people who shared detailed insights into how they manage their own health, their own views and experiences of how well health and social care services have worked for them, and how they would really like to be supported. Their stories bring vividly to life the challenges they have faced before and during the pandemic. The report also includes the insights of a further 20 people with multiple conditions interviewed in the same places.
Examples given by participants of their experiences include the following (names have been changed to protect confidentiality):
Kumar, 40, Stockwell: “When I took the test in the [mobile health unit] the word ‘diabetes’ was never mentioned. So I didn’t know what was going on. They just said my sugar was up and down and to get a glucose test.”
Shaima, 32, Birmingham: “I was on hold for about four hours the other day trying to get an appointment. They are rubbish, but if I move to a different GP they will know even less about my condition.”
Ibrahim, 70, Bradford: “I was very young, I was losing my sight, and the senior consultant was telling me that there is nothing wrong with me. They said that I was wasting their time.”
Roger, 70, Middlesbrough: “I’ve tried multiple times to get the house insulated, you can feel a draft all year round, but it’s much colder in winter.”
Bekele, 26, Birmingham: “I deal with something health related every day, whether that’s something small or big, or if it’s just having to speak to a doctor or having a look at my diary or what not.”
Nathan, 33, Middlesbrough: “The story of my life is [health professionals] not taking me seriously.”
The report aims to shape the plans and actions of everyone responsible for the delivery of health and care services alongside others who can make a difference for people with multiple conditions - nationally, in the new NHS integrated care systems and locally - by confronting them with the reality of people’s lives through the voices of people who are rarely listened to. To drive these changes, The Richmond Group of Charities' response to the report makes recommendations to a wide range of national decision-makers, including:
1. NHS England: The new NHS England chief executive should make a single senior leader clearly accountable for this agenda, incentivising and funding organisational and clinical behaviours that help to stop people developing multiple conditions and provide effective support for people already living with them. Those leading NHS England’s implementation of ICS and primary care network structures and development, health inequalities strategies, the NHS People Plan, personalised care including shared decision-making, care co-ordination and social prescribing, outpatient transformation, and work on public voice, collaboration with the voluntary and community sector and volunteering should apply the multiple conditions lens to inform their planning and assess delivery.
2. Department for Health and Social Care: DHSC should embed an explicit focus on multiple conditions into its priority to “improve, protect and level up the nation’s health, including through reducing health disparities” and build this into the NHS Mandate.
3. Care Quality Commission: The CQC should apply this lens to its inspection and regulation of individual providers as well as to its developing approach to taking a view of whole systems.
4. Health Education England: HEE, professional regulators and all involved in developing and delivering clinical curricula should ensure that their planning and development of the future workforce helps to meet these needs. Royal Colleges and professional bodies should support their members through CPD mechanisms and resources to make effective use of techniques such as care planning in the short-term.
Responding to the report, Lynda Thomas CBE, Chair of The Richmond Group of Charities and chief executive of Macmillan Cancer Support, said: “These stories shine a powerful light on the reasons why inequality causes multiple conditions, and how multiple conditions lead to more inequality. They also highlight how the structures of our health, care and other public services get in the way of professionals giving the support that people need. Tackling these issues will be an acid test of how serious the Government is about levelling up the country and of NHS and council leaders’ ability to act. Charities like ours are ready to step up but we can’t do it on our own.”
Neil Tester, Director of The Richmond Group of Charities, added: “With a new Secretary of State, a new NHS England chief executive and a new law about to shake up the NHS, we’ve got a unique opportunity to get out of this destructive cycle. It damages people’s lives, stops them from working and being active in their communities, and puts extra pressure on an NHS that’s trying to deal with the pandemic and the huge backlogs in care. It also costs the country a fortune.
“We want the voices of the people in this report to ring in the ears of decision-makers, and for the many others like them to be part of decisions about the changes they need.”
The report was commissioned by the Taskforce on Multiple Conditions, a collaboration between The Richmond Group and Impact on Urban Health, and produced by independent research agency Revealing Reality. The evidence review that informed the design of the research project is available alongside the report.
Keep up with what people are saying about the report on Twitter: #YouOnlyHadToAsk