Multiple long-term conditions

Just one thing after another

30 May 2018

Living with multiple long-term conditions

In brief

This report sets out the findings of an ethnographic research project to understand how it feels to live with multiple long-term health conditions (MLTCs). The research was conducted by Revealing Reality for the Taskforce on Multiple Conditions, who work to better understand and address the growing challenges facing those living with MLTCs and their interactions with the health and social care professionals that support them.

Executive summary

In-depth interviews were conducted at home with 10 people living with MLTCs, covering a range of demographics and locations across England. Interviews were open ended and informal and sought to understand participants’ everyday experiences of MLTCs and their perceptions of their quality of life. The research covered participants’ interactions with the health and care systems, understanding both positive and negative experiences they had had. It also explored support networks, coping strategies and the changes participants had made – or had been forced to make – over time.

Long-term conditions in England

15 million

people in England have a long-term condition

15-30%

of the population are estimated to live with a long-term health condition

The individual stories uncovered are powerful and varied. All the participants have had their own ups and downs, better days and worse. They often described 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 the ability to get out and about and engage in social activities. They also tended to experience an increase in physical pain, and a decrease in mental wellbeing. In many cases people felt stuck, with limited options.

I’m happy having a label as long as I’m not just a label.

Wendy, 44, Wirral Schizoaffective disorder, sciatica, asthma

Despite this, the participants did sometimes find their own ways to take control and manage their situations. By adapting and developing coping strategies, they could regain some agency and make decisions about their conditions and their lives. For some, this involved developing self-management strategies and actively selecting care that felt relevant to them.

In other cases, participants focused on reducing their ‘health bandwidth’ and creating ways that their work, hobbies and daily routine could suit their changing health situation. Maintaining and expanding meaningful relationships with family and friends – particularly those who supported their independence – also helped many of the participants to cope, as did developing strong and productive relationships with health and social care professionals.

It’s a grieving process – my work was a large part of my life and who I was. Saying goodbye to that has been painful.

Keith, 57, Northumberland MSK, CHD, stroke, type two diabetes, high blood pressure, high cholesterol

The development of coping strategies was, however, time consuming and required 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 of course differed from person to person, and could have been affected by age, gender, socioeconomic background and living situation, there were certain experiences that were seen 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.

While these experiences are not predictable as such, they were widespread and could have serious consequences. Efforts to reduce – or ideally prevent – these experiences are likely to have a beneficial effect. Supporting people to take control of their health, recognising mental wellbeing, helping prevent loss of mobility, encouraging critical reflection on support and clarifying how the system works could all help lead to improved outcomes.