Don't call me 'frail': Older patients don't want to be defined by their condition

The concept of frailty is often used to identify those older people who are most vulnerable to experiencing crisis in response to a relatively minor episode such as a fall or infection.

There are clear benefits to this approach: once you have identified this group of people, you can ensure everyday care is provided and avoid the need for emergency care wherever possible.

However, it may be time to rethink how we talk about frailty. During the development of I’m Still Me… A Narrative for Co-ordinated Support for Older People, we worked with more than 70 older people and they emphatically rejected the word “frail”.

‘Older people were clear that they wanted to focus on the quality of their lives, rather than narrower health or care concerns’

They didn’t want to be described in this way. 

In fact they didn’t want to be defined by their physical or medical condition at all.

Older people were clear that, when it came to coordinated care and support, they wanted to focus on the quality of their lives, rather than narrower health or care concerns. 

• Download the HSJ/Serco Commission on Hospital Care for Frail Older People report
• HSJ/Serco Commission: Further evidence supporting commissioners’ key findings
• Video: What went wrong with Mrs Andrews’ care
• More on the commission

The resulting “narrative” reflects these values. It is set out as a series of “I statements” such as the following:

‘I am supported to be independent’

Independence was described by most of the older people as being fundamental to the quality of their lives. This was understood as being able, within the constraints of their conditions, to “do what I want when I want” and to enjoy everyday activities, including those outside their home.

‘Independence was described by most of the older people as being fundamental to the quality of their lives’

Support from family, friends or carers was not seen to undermine independence. Rather, it was seen as important for maintaining independence, particularly when people needed support around mobility.

The importance of promoting independence for older people was highlighted within Person Centred Care 2020 – the position statement from National Voices and its 140 charity members that calls for older people to feel supported to be independent by those who provide their care.

NHS England’s NHS Five Year Forward View also picks up this theme, asserting that independence should become an outcome of care.

‘I can maintain social contact as much as I want’

Social contact alone isn’t enough to prevent loneliness. As one older person expresses it: “I miss social interactions. I don’t mean going out whatever, I mean having a good conversation.”

We understood people to want two things. First, to enjoy meaningful social interaction – for example, by being supported to find local groups and activities they find comfortable and rewarding.

This points to the need for approaches such as “social prescribing” – whereby GPs seek to improve health by linking patients into community and peer support – and other offers of “more than medicine” (the use of community provision such as advocacy, self-management support, walking groups, befriending, one to one coaching, mental health recovery and so on).

‘Older people are clear that the social and relational aspects of care are as important to them as having their health and care needs met’

Second, older people are clear that the social and relational aspects of care are as important to them as having their health and care needs met. This raises questions about how staff can be enabled to develop meaningful relationships within the context of significant time and workload pressures.

It also underlines the case made in the forward view’s commitments to better support for carers and new options for health related volunteering. These provide opportunities for tackling the well publicised, shameful epidemic of isolation and loneliness among older people.

‘Taken together, my care and support help me live the life I want to the best of my ability’

Older people described enjoying a better quality of life when they were supported to adapt to their changing health needs within the context of what matters most to them.

This echoes the recent call in National Voices’ Person Centred Care 2020 for health and care systems to work towards outcomes that matter to people and include broader concerns, such as independence and wellbeing.

This challenges frailty as an identity, and instead frames it as an experience around which support can be developed to ensure that older people are supported to live the lives they want, in ways that matter to them.

Service implications

What does this mean for the ways in which we support older people to live the lives they want?

I’m Still Me highlights a clear tension between the paradigm of frailty and the identity and aspirations of older people themselves.

As a result of our work on this narrative, National Voices, Age UK and UCL Partners are calling for a move beyond our current technical or medicalised discussions of frailty.  

‘We need to develop shared principles and language that will underpin co-produced support for all older people’

If we want to work in partnership with older people, we need to develop shared principles and language that will underpin co-produced support for all older people, especially those most vulnerable to crisis, to live well in the ways which matter to them.

The I’m Still Me… statements offer an important starting point for health and social care services to work together with older people to focus on the outcomes that matter most to them.

Let’s grasp these opportunities.

Natalie Koussa is the programme lead for Wellbeing our Way at National Voices