Although most of the UK population is proud of the NHS, older people living with multiple long-term conditions believe the health and care system is not set up to deliver their needs, according to NHS tracking data.

The evaluation, commissioned by NHS Improving Quality, uses data from the Public Perceptions of the NHS and Social Care Tracker and was carried out by the Ipsos Ethnography Centre of Excellence, part of Ipsos MORI.

The ethnographic research considered the views of 36 patients, family members and carers to better understand them and their behaviours over time. Key findings included:

  •  - People greatly value the care and support they receive and, in the main, feel the care they receive is good
  • -  People are trying hard to manage their long-term conditions but often feel the system is not set up to cope with their complex needs
  • -  People with more than one long-term condition struggle to coordinate them and feel there is no support linking their conditions or focused on them personally 
  • -  People with long-term conditions seek achievable goals and support that fits with their everyday lives
  • -  People can feel they are a burden, which can prevent them from seeking help and support 
  • -  There is often an absence of discussion about care and care needs within the home and the healthcare system

Beverley Matthews, Long Term Conditions Programme Lead at NHS Improving Quality, said: “This is very exciting work that gives a uniquely rich insight into the lives of people living with long term conditions. If we are to improve patient care in this area, we need to fully understand the issues that people face on a day-to-day basis, and this ethnographic approach helps us to do that.”

She added: “We will be working with our partners across health and care to help enable people to make the changes they need to for the benefit of patients, carers and families.”

Dr Martin McShane, national medical director for long-term conditions at NHS England, said: “Listening to people’s stories and truly understanding, in depth, the impact long-term conditions have on their lives, and the lives of those who care for them, brings home the need to change the way they are supported. This ethnographic research is revealing, touching and compelling. It reminds us to think person, not just condition, and ask ‘what matters most to you?’.”