This is nothing to do with that notorious book or film, I’m afraid, but if you’re a Patient Leader it could be much more interesting!
When you see an invitation to act as a Patient Leader on a particular topic that’s of personal interest and you think, “I’d like to do that!” the next natural reaction is perhaps, “……but do I know enough about it?……will they think I’m wasting their time?” THEY, of course, are the health professionals you’ll be working with. I’ve talked to a lot of other volunteers and only one has said that he wondered if THEY really wanted him there. The usual reaction is that the professionals have welcomed us. Of course, patient engagement is now a key element of NHS policy in Leeds, so a cynic might say, “Well, they would, wouldn’t they?”, but all the feedback I hear totally belies this.
Having worked on the other side, i.e. for an organisation which welcomed enthusiastic amateurs on an advisory committee, I know that in order to be accepted as a useful member you have to know what you’re talking about, understand where the professionals are coming from, try to be relevant, be prepared to justify your views, and not talk too much! That sounds a tall order, but we all can do it otherwise we wouldn’t be involved in this sort of work in the first place.
I think my experience as a member of the Supported Self Management Steering Group is typical. One of the hardest aspects to get your head round at first is medical jargon and initials. I was baffled, for instance, as to what SMT, COPD, or even LTC stood for, but then I realised that I only had to ask. A year on, I certainly feel useful, but herein lies another potential trap – we begin to feel “part of the family” and identify strongly with the professionals and find it harder to keep our objectivity and raise objections if that’s what’s needed.
However, I think an outside observer would have to agree that this sort of patient involvement in Leeds has been a real success. What happens, though, if we go outside Leeds and try the same thing in other parts of the country? I agreed to attend a focus event in London on Self Management of Long Term Conditions (LTC, as I now say!). When I rang I was told there were two groups – patients and health professionals. The assumption was, of course, that I would join the patients. When I said no, I want to join the other one there was a long pause. I persevered, got my way, and duly arrived in London to meet the professionals – all strangers from different parts of the country, all with very senior sounding jobs. They were intrigued to hear what we do in Leeds, both the idea of patient engagement and the way we were pursuing the idea of health coaching for LTCs. It was a cracking couple of hours. We all got something useful from it.
On the train on the way home I mused about how to sum up the experience. How about this: several red blobs and one white blob went into the focus group and out came a number of blobs in various shades of pink. I hope that’s true, and if it is it’s a real indicator of the value of our Patient Leader programme.