Living with a serious long-term condition is often hard and complex work. My team and I are interested in finding ways to reduce complexity and lift the burden for people with these conditions, and their families, at end of life.
To help us think about the kind of research questions we should be asking we held a research forum at Freemantle Community Centre in Southampton. We invited people with a range of conditions to join us and to inform our work.
They spoke to us about their experience of day to day life with long-term and sometimes life-limiting health problems – they had heart, lung, and kidney diseases – explaining just how complex these diseases were to manage. An important problem that they described was managing their medications – about the planning and organisation required to manage medications and to match them to episodes of illness.
They also felt that getting the right help from the NHS was sometimes a challenge. It is not always easy to identifying the right service to use or the right health care professional to contact; it can be physically difficult getting to doctors’ appointments and to clinics for tests; and it can be expensive in time and money to attend these.
“My husband says that attending dialysis three days a week is like clocking in just like going to work.”
“Sometimes I’ve been challenged about parking in a disabled bay because people can’t see my disability. It’s very frustrating.”
I lead research into the complexity of healthcare for people with complex health problems and I talked about the work that patients and their families have to do to adhere to treatments and stay well. With my research team, I wanted to hear first-hand from patients about the most difficult or onerous tasks in everyday life and to identify topics for future research. We were incredibly grateful to everyone who gave up their time to travel to the meeting to help us think through these complex problems. The event in Southampton was organised by NIHR CLAHRC Wessex. If you would like to get in touch you can email
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NIHR CLAHRC Wessex PPI
E2005 Building 67
University of Southampton