This week I attended an event called Empowering Older People’s Care Summit organised by NHS England and Age UK the purpose of which was to promote an understanding of frailty.
Over the last couple of years I have attempted to read my way into the subject but there is huge amount of material and I am not a clinician. The speakers gave a wonderfully lucid summary which was very helpful. Here are the main points I took away.
Frailty should be thought of as a Long Term Condition
Professor John Young is National Clinical Director for Integration & Frail Elderly at NHS England. He gave a clinician’s view of frailty, arguing that it should be treated as a separate long term condition like others on the grounds that it is common, progressive, episodic, preventable and has the potential to impact quality of life.
Frailty has stages: a beginning, middle and end
Young described how frailty emerges over several years and how it should be thought of as an accumulation of deficits. Minor events can trigger major changes in health from which the patient may fail to return to their previous level. Frailty is often only recognised after a crisis even though the signs can develop over years. ‘She’s not as steady as she was’ becomes ‘Mum is slowing down’ and then ‘She was a fall waiting to happen’.
‘If she was a fall waiting to happen’ asks Young ‘why didn’t we do something about it?’
Frailty means different things to specialists and lay people (and non-specialist health care professionals)
Ruthe Isden is Health Influence Improvement Director, Age UK and provided some fascinating insights into how people understand the word frailty and the language around it. Lay people associate it with old age, end of life, dependence on care and malnutrition. The overweight are not considered frail. Men are less likely to be thought to be frail than women. The public has little understanding of degrees or progression of frailty – you are either frail or you are not.
The elderly don’t like to think of themselves as frail. It’s not part of their everyday vocabulary and the word can provoke an emotional response. There was some discussion about whether it was helpful to use the word clinically if it has such negative connotations and scope for misunderstanding. Speakers drew a parallel with cancer and dementia where over the years more awareness, education and better intervention have reduced the associated stigma and expressed the hope that the same could be expected of frailty.
Transition between different stages of frailty has different consequences and emotional responses
Isden explained that older people describe refer to frailty in terms of everyday tasks and how it feels to them. She described a progressive loss of independence and the language that is descriptive of each stage:
- No support needed
- Using light touch support (‘getting slower’, ‘feeling tired’)
- Needing support to maintain the status quo (‘struggling’, ‘frustrated’, ‘feeling low’, ‘finding things tough’)
- Needing support to carry out important tasks (‘loosing control’, ‘not coping’, ‘vulnerable’, ‘weak’)
- Needing support for personal hygiene (‘getting frail’, ‘giving up’)
Generally people accept the transition between the early stages but the step from needing help for important tasks and personal hygiene is very significant and a time of crisis. People’s first instinct is to try to find their own solutions and without previous experiences will have low awareness of the support that is available.
Multi-morbidity changes the ideal mix of care between health and care
Young had a diagram showing that with one long term condition the way in which the NHS is organised works really well – standardised care based on NICE guidance. But multiple long term conditions or frailty means individual care is needed and here the system struggles. We talked on our table about the way in which patients can end up going to different hospitals in one city for each condition and how the well-known problems of information sharing – both within the NHS and between the NHS and social services – makes life so hard for this group.
Conclusions for Intelesant
I left the meeting with three phrases buzzing in my mind:
1. ‘If she was a fall waiting to happen why didn’t we do something about it?‘ underlines the validity of the work we are pioneering in South Manchester with UHSM and the Manchester Carers Forum to find cases of frailty via community groups and families. We believe this really demonstrates empowerment since the conversations happen in the patient’s own social circle rather than a clinical setting;
2. ‘Why on earth would I tell my GP it’s taking me longer to do my ironing? He’s a serious doctor who I go to when I have an ailment’, a patient comment picked up by Age UK. The signals in everyday data really do matter. We can help people to make sense of them, give them confidence that they are not wasting the doctors time and will be taken seriously;
‘3. I’d like my life back please’ is a plea from a patient with multiple conditions. In the work we do in digital health for example in our COPD app we must always bear in mind that the tools we create should be about making helping to make life easier, not more stressful.