Ponchos, national models of care and local contexts

Attendees in discussion at our end-of-life priority setting event.

Mike Spence and Rebecca Spencer blog about whether a ‘one size fits all’ approach to care really works, and how our end-of-life work has looked at local needs.

Have you ever been shopping and seen that an item of clothing is labelled as ‘one size fits all’? Well, this has happened to me on a few occasions, usually as I’m buying a poncho for a festival. For those who aren’t aware of ponchos, they are every festival goer’s essential rain coat/jacket/protection from the almost certain rain. They are handy little things that also double up as a useful aid to sit on to protect from any mud and/or creepy crawlies that may be on the floor.

A woman wears an over-sized poncho at Glastonbury festival.

One size fits all?

You may ask why I’m talking about ‘one size fits all’ ponchos… well, it’s because, although they are practical, the problem with them is that they just don’t really fit anybody properly. As a six feet three inches tall, athletic (I’m using writer’s licence here) male, it is safe to say that the one size fits all poncho means that my legs get soaked when it rains, as the poncho is just too short, and when the wind gets up it blows in my face as it’s far too wide for my frame. My wife has different issues with her poncho; the arms are too long so she can’t get her hands out, and she’s about five feet five so her poncho drags on the floor and collects mud. So, all-in-all, they really aren’t fit for purpose and I would go as far as to say that instead of them being one size fits all, they’re ‘one size that fits no one at all’.

This leads me nicely on to the development of ‘one size fits all’ national models of care, priorities and policies within the NHS. In a similar way to my poncho, I’m not really sure if they do fit all, as they often don’t take into account local and regional contextual differences that each individual clinical commissioning group, trust and third sector provider have. It’s widely reported how important context is within any form of healthcare service provision: it is very difficult to define a ‘one size fits all’ service that would suit both inner city Manchester and also rural Cumbria.

Consequently, we’ve been involved with a number of different local end-of-life pieces of research over the past couple of years, which are really focussed on the services provided by our partner organisations. So when the national Palliative Care and end of life Priority Setting Partnership (PeolcPSP) produced their excellent document focussing on the top priorities for end-of-life care research, we were keen to see how these priorities resonated within the Greater Manchester locality.

We initially worked with 29 healthcare professionals using ‘discovery’ interviews, and we were able to highlight six (out of the 10 suggested by the national work) areas for future end-of-life research. These six areas really appeared to have distinct importance to healthcare professionals providing end-of-life care locally. From here (and described in more detail later on this blog) we worked with a range of carers and local healthcare professionals to further define and understand just why these six areas of end-of-life care are so important.

The nationally developed end-of-life priority report is a fantastic resource and provides a great starting point for future work, but I’ll let you read our full report so you can judge for yourselves whether it would be worth exploring within your region, to take account of local contextual differences. What we found was that the six (out of the 10 national) priorities that were initially identified appeared to be important to both local carers and healthcare professionals. The rationale and reasoning behind the importance of these often differed between respondents, but it was possible to gain a consensus that the three areas of most priority for future end-of-life research should be around a) planning for end-of-life care in advance, b) access to 24 hour care, and c) staff and carer education.  

When planning the consultation process, we reflected on our previous engagement work to consider how best to discuss those sensitive end-of-life topics. It’s safe to say the whole planning period took a lot longer than we anticipated. This, however, turned out to be time well spent because we had such meaningful consultations with 32 healthcare staff and 26 carers across a wide geography of Greater Manchester. Planning took time because there were so many issues to consider: should we invite carers and staff to discuss end-of-life topics together? How could we quantify what are the most important end-of-life topics for carers? How could we ensure we consulted with the right healthcare professionals?

Within our team, we decided to consult with carers separately from staff and we had the resource to go out to visit carers within local carer groups. By being flexible and organising several carer group meetings or one-to-one interviews over a number of months, we also made sure a diverse group of carers from across a wider geography of Greater Manchester took part. Carers sitting in groups of other carers they knew well seemed to make it easier for them to share their views on often emotive end-of-life topics. It was actually very moving to hear the first hand experiences of carers and how they were kindly willing to re-live some of them to help us to prioritise end-of-life research locally. During the discussions it was important to emphasise they only needed to share information which they felt comfortable with and it was confidential. We also found that having dedicated time to debrief after each carer meeting was advantageous as some carers became tearful when discussing the death of their loved one. Understandably, carers were also keen to ensure the results of this work would be fed back to them and that their input was used meaningfully.

We learnt a lot during the consultation with carers and adapted our approach as we went along. We found that carers were uncomfortable ranking end-of-life care topics as they did not want to indicate one topic was more important than another and found the numbered ranking approach in itself caused some confusion. We adapted our approach by asking carers instead just to tick which topics were most important to them which then led on to discussions about why they had chosen each topic. It was useful to see that all the topics had some importance to carers which showed that the six topics were valid in their own right (and emphasised the importance of the national work of PeolcPSP).

Several carers were uncomfortable with their views being audio recorded during discussions (we used consent forms allowing them to opt out) and we adapted to this by noting key points on a flipchart instead. Several carers were hard of hearing and/or had visual impairment, so it was important to use large screen presentations, flyers, handouts and a microphone where possible during the various consultation meetings. Some carers were quieter than others and didn’t voice their views in the group setting, but we used a data collection form for collecting data which enabled individual views to be heard as well as the group views. However, not all carers liked filling in forms because as we’d taken the time to meet them it seemed a little too impersonal. Therefore, we took down the information for them to summarise the discussion we’d had, particularly in the one-to-one interviews.

Professor Gunn Grande presents at our end-of-life priority setting event.

Professor Gunn Grande presents at our end-of-life priority setting event.

For our consultation with staff, it made more sense to gather people together in a half day workshop at the University of Manchester to discuss the topics (with a nice lunch of course!). A lot of staff travel as part of their role anyway and the opportunity to network with staff from other organisations was also an enticing factor. Our biggest hurdle was finding the right people who work in end-of-life care and have an interest in evidenced based practice improvement. To help us we approached senior managers in end of life care at our NHS partner organisations, who could act as a remote advisory group for us. These key people helped us invite the right people to the workshop and championed the event within their organisations to encourage staff to attend.

At the workshop we had a fantastic turnout of senior management and clinical staff who we split up into small discussion groups (with a good mix of staff from different organisations) to discuss each of the six topics in more detail. Running two 45 minute discussion sessions worked well for the task of understanding why each topic was important and also developing some broad research questions. It also allowed each member of staff to discuss at least two topics of their choice on the day, topics which they felt were important to them. In fact, each discussion group of two to five staff acted almost like a focus group with a facilitator to probe more and keep the discussions focussed, and our observers found that each group had its own way of sharing ideas. The flexible approach to discussion and achieving a consensus on what were the key research questions seemed more beneficial than imposing a rigid structure that some staff may not have been comfortable with.

More information

Read the full project evaluation report or the easy-to-read summary. For more information please contact Rebecca Spencer, Project Manager.