The first report from the new Taskforce on Multiple Conditions shares learnings from ten in-depth interviews with people living with multiple long-term conditions from a wide range of demographics and locations across England, including from our local area. It showcases their everyday experiences and own perceptions of their quality of life as well as the changes they’d like to see.
The people featured in the new report range from 24-year-old HR professional Anna in Somerset, to 71-year-old Godfrey, a retired factory worker who lives in Lambeth. Combined, they present 37 different health conditions, including diabetes, depression and HIV. The interviewees often describe their experience of living with multiple health conditions in terms of what they have ‘lost’ over time, most frequently a loss of mobility and the social connectedness that comes with it. They also share their experiences with physical pain and poor mental wellbeing.
Still, many have their own ways to take control, including self-management strategies and actively selecting care that felt relevant to them, or creating ways so that work, hobbies and daily routine can suit their changing health situation. In addition, maintaining and expanding meaningful relationships with family and friends also came through as important, as did developing strong and productive links with health and social care professionals.
Crucially, the research reveals the development of coping strategies is time-consuming and requires effort and energy that not everyone was able to give. Wider circumstances made it more difficult for some to adapt, often leading to further challenges and complications. While these circumstances differed from person to person, some experiences seemed to consistently make managing multiple long-term conditions more difficult. These included reduction in mobility, chronic pain, shrinking social networks, losing the ability to engage with work as it is typically structured, and lower mental wellbeing.
Based on hours of research spent with each participant, it covers their interactions with the health and care systems and support networks, their coping strategies and the changes they had made – or had been forced to make – over time. It paints a picture of their everyday experiences and explores the impact of circumstances beyond health, like significant life events, in their quality of life and the management of their conditions. Crucially, it asks what changes they’d like to see, both in their care and in their lives.
The report was commissioned to inform the work of the new national Taskforce by focusing on people living with multiple conditions and drawing insights from their first-person accounts. It builds on existing evidence and supports our recent research, which explores data and stories of people with multiple long-term conditions living in inner-cities, looking at progression and its links with age, ethnicity and deprivation.
The Taskforce on Multiple Conditions is a an ambitious cross-sector partnership, driven and funded by three main programme partners - The Richmond Group of Charities, the Royal College of General Practitioners and ourselves, to learn more about the causes of, and potential solutions to, the growing health challenges of multiple long-term conditions.
Building on these findings, the Taskforce has identified a series of activities to take forward, including reviewing information and support offer available through the partners involved, including the 14 national charities part of The Richmond Group, engaging more people with long-term conditions and their carers in the debate about addressing care needs; and continuing to build the evidence base to underpin policy and strategy. The research has also highlighted the need to review the language used to communicate about multiple long-term conditions to widen the biomedical lens, work that we are taking forward.
12 November, 2019
This programme provides social enterprises delivering health and wellbeing initiatives with training and funding to improve their impact and sustainability. Eight organisations in Lambeth and Southwark receive grants and a year-long programme of support.