Understanding the lives of people living with frailty
To celebrate the launch on new guidance, Fit for Frailty, every day this week we have published a guest blog on aspects of frailty. Today's article is from Tom Gentry (@TomoGentry) of AgeUK who is writing from the perspective of older people who live with frailty.
In April, we reported on the Government’s efforts to transform primary care, which set out a programme to deliver better coordinated, well-planned care for the most “vulnerable” people being supported by GPs.
The terms “frail” and “vulnerable” are often used interchangeably in this context. What is often lost is the person behind the terms and the things in their life that are making them “frail” or “vulnerable”.
Age UK set out to better understand the lived experience of people living with frailty. We worked with Ipsos MORI to spend time with older people to hear and see the challenges they face and what in their lives was important to them. There are a number of important headlines that came out of the research.
FRAILTY IS NOT A TERM THAT PEOPLE LIKE
The first is that almost universally, “frailty” was rejected as a term. Though there was some sense that it could be recognised in others, people did not see it as a way to describe themselves.
This has important implications for how those that care for older people roll out initiatives such as the programme mentioned above, which risks alienating people by rooting their needs in terms of their vulnerability and frailty rather than their capabilities.
The second headline was loneliness. A wide range of participants said how they missed relationships with friends and in some instances there was resignation that they can no longer expect to have peer relationships.
In many cases, they were not socially isolated. They had good relationships and support from family and partners. But as with any other part of your life, breadth and quality of relationships were equally important and less was being done to facilitate this.
With the negative health impacts of loneliness becoming more understood, this issue is too important to ignore.
OLDER PEOPLE WHO ARE SUPPORTED ARE BETTER OFF
A third headline was that people who were supported and able to adapt to changing health needs were on the whole better off. Older people are more likely to live with multiple long-term conditions and disability, but it can often be the inability to respond to this that creates challenges, rather than simply the conditions themselves.
What does this mean for the NHS and does the Government’s programme help? As we said in April, it’s certainly a step in the right direction.
Identifying people living with frailty; planning their care in a coordinated way; and creating responsive services for urgent needs (all features of the plan) must become a minimum, and not just for 2% of the practice list.
However, putting this medical response in the context of the headline issues above is going to be crucial to improving people’s daily lives.
Planning for what’s important for the person receiving care rather than simply a clinical outcome must become a central feature of how we support older people living with frailty.