Could you be a champion, working hard to make sure someone with a learning disability gets good care and support at the end of their life? You can make a difference.
That’s the conclusion I came to seven years ago. For the past decade, I had chaired the judging panel for the annual Linda McEnhill Award. We selected winners from a wide range of individuals, teams and projects that had demonstrated excellence in providing palliative and end of life care to people with a learning disability. In 2017, I looked back at 20 winners since 2008, trying to find common threads among them. I contacted them all and asked what had happened since their award (16 replied).
What I found was that most good practice was highly dependent on one or more “champions” with drive, enthusiasm and determination. These champions included staff (sometimes quite junior staff!) working in a health or social care setting, and family carers (like Jean Willson).
But I also found that good practice had to be supported and sustained by managers and organisations. Without that commitment, the good practice withered. Brilliant initiatives folded when the champion left their post or the project money ran out.
There were other common threads. Without exception, good practice included collaboration between services and also, crucially, collaboration with families. The families and carers (including paid care staff) had to be listened to and be part of the team. Often, this was a learning curve, and those involved had to do things in a new or different way.
Through individual and organisational commitment, and working together, it was possible to ensure that the person’s story was at the heart of everything. That was key. Care was proactive and well planned, highly individualised, often creative, with responsive and flexible professionals and carers. All those involved wanted to make sure that the person’s voice and wishes were heard. Good practice was supported by the development of tools and staff training.
We summarized these insights into this image and wrote an article about it.
It left me wondering… It is so encouraging to know that one person can make a huge difference, but how can we make sure that good care is not a postcode lottery dependent on the presence of a local hero? How can the champion’s work become everyone’s work? How can we replicate good practice across the country, if sometimes it can’t even be replicated within one organisation, because the champion has left or a new service manager has different priorities?
I was also intrigued by the few winning projects that did keep going, the places were good practice seemed to have been embedded within organisations. What made that difference of sustainability?
These were some of the questions that led us to the DAPPLE project. Two of four study sites (West Yorkshire and Croydon) produced Linda McEnhill Award winners that we want to learn from.
Now that we’ve begun to get to know the people and services within the study site areas, I’m struck by the sheer number of champions everywhere. We’ve talked with commissioners, managers and staff working in learning disability services and hospices, GPs, nurses, self advocacy groups and many others. We are blown away by the enthusiasm for the DAPPLE project and the willingness to help. That willingness is perhaps partly because people really want to get it right, but keep hitting barriers – like not being able to discharge someone home from hospital, because the home doesn’t have the skills or resources to cope with changing care needs.
It really helps if staff and services know about each other. Sometimes they do. There are places where the same names keep popping up: “Oh, have you met so-and-so? You must! They really make a difference!”
But there are also places where champions that clearly make a huge difference within a large service, but we find that other key service providers or commissioners haven’t heard of them. We are also struck by the sheer number of organisations and services that we could, and should, be talking to. We were sent a list of 50 residential care homes for people with a learning disability in just one borough – where do we start?
Conceding that Rome wasn’t built in one day, this is where I’d like us to be in, say, 10 years’ time. I want to be confident that anyone with a learning disability who reaches the end of their life and could benefit from palliative care, gets the best possible support. Not just people supported by award-winning services with amazing champions, but also people living in a small independent care home where staff have no experience of end of life care, and are rather frightened. People living with families or in their own flat. I want someone to notice their need and do something about it. I want their families and carers (including paid carers) to be well supported.
No-one can do this alone. It does seem crucial that services work together. But how do we achieve that, if there are so very many of them?
That’s just ONE of our many questions.
Do you have any thoughts? If so (even if it’s simply more questions), you can join in the conversation and leave us a comment. From today, we will write a weekly blog. Expect lots more questions and thoughts, but hopefully, towards the end of the project in 2027, also some answers.
Do subscribe and come along for the ride!
Written by Professor Irene Tuffrey-Wijne (Project Lead, Kingston University)
Comments