Older people living with multiple long term conditions are generally happy with the NHS but often find the health and care system is not set up for their needs.

That is the main finding of an ethnographic evaluation carried out by the Ipsos Ethnography Centre of Excellence (ECE) – part of Ipsos MORI – who were invited to undertake the work by NHS Improving Quality.

Published today, the ethnographic evaluation is an in depth approach to understanding people and their behaviours over a period of time.

The key findings include:

• People greatly value the care and support they receive from the NHS and the wider health and care sector, and in the main feel the care they receive is good.
• People are trying hard to manage their long term conditions to the best of their abilities, but often feel the system is not set up to cope with their multiple and complex needs.
• People with more than one long term condition struggle to coordinate them all. They can feel there is no support linking all of their conditions and focusing on them personally and holistically.
• People with long term conditions want to have everyday achievable goals and support that fit realistically within their everyday lives.
• People can feel that they are a burden within their home as well as within the health and care system, which can prevent them seeking the help and support they need.
• Too often, there is an absence of discussion about care and care needs, within the home and within the health care system.

The work has been delivered through NHS Improving Quality’s Long Term Conditions Improvement Programme, which is commissioned by NHS England.

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.

“The evaluation has highlighted some significant issues and challenges, some of which we knew about before but this work really puts weight behind them. 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, NHS England’s National Medical Director for Long Term Conditions, 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. Ipsos Mori’s ethnographic research into people with lived experience of enduring health problems is revealing, touching and compelling. It reminds us to think person, not just condition, and ask ‘what matters most to you?’.”

The evaluation heard the views of 36 patients, family members and carers in order to gain an insight into their experiences of living with and managing their long term conditions and the care they receive.

The overall aim of the work is to help national, regional and local health and care economies to design their future services effectively in order to meet the needs of people living with multiple long term conditions, as well as the needs of their carers.

The objectives were to understand and explore patients’ support networks, relationships and interactions, and planning and coordination of care within the context of their everyday lives. This was done using a filmed ethnographic approach where ethnographers spent a day with 15 patients, carers and their families, within their homes and local communities. Patients were then asked to fill in a four-week care diary, after which ethnographers returned to see them to reflect on the findings.

This project was not designed to produce a statistically reliable set of results, but rather qualitative insights into older people living with long term conditions in a way that would not otherwise be possible via a survey.

The results of the evaluation will be used to co-design improvements in service delivery for people living with long term conditions, looking at what simple changes could be used to make the biggest differences to their lives. Final results will be published by the Spring 2016.

Ben Page, Chief Executive of Ipsos MORI, said: “Anyone who watches these moving videos will see there’s huge scope for health and care organisations to make in-expensive changes both big and small to better treat people holistically, and ensure those who care for them are in turn supported. We want these findings to prompt a wide-ranging and open discussion about what more can be done to improve people’s quality of life.”

The evaluation resources, including five videos and a presentation detailing the findings, are available on the Ipsos MORI website.