Expert patient programme roundup

It was the last session of the Expert Patient programme this week and, I have to say, I’m somewhat relieved. I’d tried not to have any expectations of the course, but even so, I did think it would be more useful than it turned out to be. Although I do have a lot of coping tools and techniques in my ‘toolkit’, I think I thought that discussions and group exercises would be interesting and stimulating, and that having some peer support from others in similar situations would be beneficial. Sadly, the course really was so rigid that discussions were cut short and small group and pair exercises were few and far between. Apart from action planning and a couple of visualisations, most of the tools and techniques were presented as theory and we did not get to experience much of them which, even if they were not new to me, would have been interesting and useful.

Overall, I’m really disappointed. It was a very ‘top down’ approach to teaching: The facilitators have information – they tell us, the ‘patients’ the information, we now have the information. This way of teaching seems quite outdated and unsuited to adult education, especially to a group of people who  may previously have been isolated and who may have wanted more interaction with each other – and who would definitely have a lot more to offer than a few suggestions in a brainstorm.

Sadly, because we were never asked what we wanted to get out of the course, the facilitators could not help me adjust my expectations about small group activities and discussions.  Perhaps, if I’d been asked at the start what I wanted to gain from the course, and if they’d established that this was not going to happen, I would not have attended all the sessions that I did. I kept going back in the hope that I would have one or two new things to take away.

Thankfully, I have learned two very small things overall. In the very last session, I did find a problem-solving exercise about dealing with health professionals useful – and will definitely be taking in my MP3 recorder next time I have a consultant appointment.   I also learned about a way of reporting side-effects of drugs – which was something that I had no idea about before.

Other people did seem to get a lot more out of the course than I did, which is positive. I guess overall I would recommend it for people who haven’t yet done any self-management, or who are newly diagnosed. The mindfulness course that I did at the Buddhist Centre a few years ago was much more practical and enjoyable. The techniques I learned then are still ones that I use today and it also led me on a path of exploring mindfulness based CBT which I have found very useful for both coping with my arthritis and for depression.

I don’t want to be too negative though, so I’ll end on a positive note! I now get my Tuesdays back, and I know that I am already doing pretty much all I can do to live well with, and to self-manage, my PR.

Best things over the past week: going out for food and dancing with some friends on Friday. I managed to stay out til 1am – though I did have to pay back for it the next day with mild pain, total exhaustion and a few tears.  I also saw the Muppet movie on Saturday and that was GREAT! Highly recommended.

Low point: In today’s Expert Patient programme when I remembered  all the rude things that consultants have said to me over the years!


One response to “Expert patient programme roundup

  1. Hi Ruth,
    Sorry to hear about your experience. I just wanted to say that I have been working with EPP CIC for the last 9 months and that they have had a similar feedback from a few other participants. The good news is that a new course has been developed: “Self Management For Life”. One of the key differences is that it is more open, allowing for greater debate amongst participants. Trials have taken place in Oxford and EPP CIC is now looking to take it across the country. I will keep you informed if it gets commissioned in the North West.

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