Vivienne Windle is the public and patient involvement contributor for the study and co-author of this article. Dr Melinda Taylor is Senior Research Fellow in Organisational Behaviour for NIHR CLAHRC Wessex Data Science Hub based at the University of Southampton
Health Education England invited the Data Science Team to evaluate the training element of four projects aimed at enhancing frailty care across Wessex. The projects are outlined in our two previous blogs.
We requested public and patient involvement (PPI) and were fortunate in being introduced to Vivienne Windle, an experienced PPI representative, who made a valuable contribution to our study. Naturally, Vivienne was engaged in our ongoing discussions about the nature of frailty and we invited her to share her insights, which you can read below.
What is frailty?
When I was asked, as a PPI contributor, to get involved in four projects dealing with frailty, an image came into my head of a frail, small, elderly lady, or the heroine of a Victorian novel who keeps fainting.
Although I later read that conditions associated with frailty included confusion, falls and weakness, and I could see that the projects were aimed at avoiding repeated falls or hospital admissions, or ensuring that there was continuity of care for people who were seen by different professionals, I continued to struggle with the concept of frailty.
It seems that I was not alone. Reading the report on the frailty project, it turns out that people the medical profession consider to be frail don’t see it that way at all. People will describe themselves as elderly, or as sufferers of a particular illness, but respondents to a research project on frailty were quite frank about not thinking ‘frail’ applied to them.
Even my 84 year old mother, now that she has been given the all clear following a heart by-pass ten years ago, and after having cataracts removed from both eyes and a hip replaced, continues to describe herself as ‘disabled’, rather than ‘elderly’ or ‘frail’.
And I now know from the report, that not everyone living with frailty is elderly. As the partner and carer of a person with Parkinson’s I recognised the issues the person in the study was grappling with when, having fought hard against being called disabled, he decided that being labelled as frail was worse. Most people I know with long term or complex conditions would identify themselves as ‘people with…’ and the name of the main underlying condition they have.
The projects themselves, while all dealing with frailty, were very different. A well-established project allowing ambulance crews to access information on a patient on arrival at their home seemed to go extremely well, probably because it had already brought on board all the people who were likely to be involved. On the other hand, one which only budgeted for one part-time researcher and ‘a nurse, or physio or occupational therapist or something’ didn’t seem to get off the ground very quickly. A project which relied on training staff to deliver the pilot had not budgeted for staff hours to undergo the training. The workforce initiatives themselves seemed to reveal from the start that staff were likely to interpret frailty in different ways, and that they worked better when given an actual name of the condition and diagnosis, so that they could decide how the patient should be cared for. What the four individual projects had in common was a push to ‘join up’ the services offered to patients whose underlying diagnosis led to them having to see many different medical professionals (GP, consultant, nurse, occupational therapist, physiotherapist etc.)
As a patient and carer from outside the medical profession, I was struck by the report on progress from one of the projects stating that there had been issues with using tools which the nurses had already said would not work. I do not believe that you would get enthusiastic take-up or co-operation from staff participating in a research project if they feel that their views had already been ignored!
As a previous member of the North Thames CLAHRC Research Advisory Panel, I knew only too well that it is only the PPI requirement which leads some researchers to include patients’ views. Even then, the weakest projects are the ones which see this as an ‘add-on’ to get their funding through – design the research, and only then ask the PPI contributor. Perhaps a ‘staff input’ requirement should be added.
The difference in progress by the four projects I was asked to look at over a period of time confirmed my view that involving the professionals involved in delivering it in the design, and thinking about how it will work in practice is the key to success. Of course, the people from the CLAHRC team were very ‘hands on’, including observing focus groups how the research was carried out. Meetings with the team were every few months, and a lot had happened in between each meeting. All of them were enthusiastic and knowledgeable, and I’m sure the health professionals who were running each of the four projects welcomed their input and advice.
So – what is Frailty?
I’m still struggling with that concept, but at least I know I’m not the only one.