Over the course of my clinical career I have learnt an incredible amount from my patients and their families. I can’t put it all into words but I feel I have learnt about life, about how to cope with life’s challenges and about how to be grateful for life. The skills I have learnt from my patients has got me through my own tricky times. I have also realised that these people carry an immense amount of wisdom and experience about their conditions. And this is sometimes more valuable than much of the medical expertise the health professionals have. Indeed when working in rehabilitation the most effective work was that which was guided by the patients. They often knew what would work best for them better than we did. We were simply the facilitators – delivering the relevant therapy when needed.
The same goes for research. People with PPA and their families have given me the motivation and enthusiasm for this work. They have also given me ideas and direction. I could not do my work without the time and generosity of ideas that people with PPA and their families have given me. Their perspective is so valuable. It makes everything much more relevant. And I am almost surprised by how easy and natural working with my steering group has now become. My steering group are members of my project team. We work together to identify new ideas and modify old ones (or co-produce stuff- co-produce being the most on trend word for this area at the moment and i am totally on trend right!!??).
In order to work together with my steering group we have developed some routines and strategies that work for us. I do, however, have to mindful that I keep reviewing these. People with PPA have a progressive condition. What works now may not work next year. Unfortunately that has also meant not everyone has been able to continue as members of our group. We have consequently had to recruit some new members to make sure we had fair representation. In doing so we have, as group, adapted to their needs too.
Adaptations need to accommodate both more practical and more communication based issues. And I just wanted to ‘show off’ a couple of the techniques that have really worked well. This has included having one member attend via a teleconference link; she is working and can’t always come along to meetings in person. This was actually quite exciting and another member of our group tweeted about it. See how on trend we are with all our tweeting etc!
I also regularly communicate with people before and after meetings, providing them with an agenda and minutes. In the past this has included telephone calls and emails to gather people ideas prior to group discussions. Group discussions can be incredibly difficult to negotiate when you have a communication difficulty. More recently I have asked people to collect information prior to a meeting- and we have then spent the meeting putting this pre-prepared information together. This means less time generating a complex language based idea in a meeting.
In our last meeting we spent some time planning out the next two years of meetings. To do this we use a voting system- with post it notes. Even the members of our group who are much less verbal were equally able to engage in this task. It also means we now all know what to expect over the next two years (ahhhhhh only two years left).
Having made all the adaptation and having endeavoured to be as inclusive as possible I am also aware that in two years time when we finish we will need a big fanfare and farewell for the steering group. In fact what we didn’t document on our white board is that we all agreed we will need an enormous goodbye party!
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