Patient Opinion and giving feedback

I had the best Christmas present this year (on the 27th December!), when I visited the orthotist at Dorset County Hospital. I was given a neck brace, which signifies the first tentative steps towards getting back on the water - a very exciting prospect for a sailor land-locked by doctors!

Whilst I have experienced very frustrating appointments from the NHS, I have also been privileged to experience first hand a brilliant NHS too. And I feel very strongly that, when appropriate, positive feedback should be given.

There is more than just the self in self-management

Self-management is about managing your own long-term health condition. But the word "self" can be a bit misleading. I self-manage myself and find it really empowering to have that control, but my learning and self-management has been facilitated by a number of people: the tutors on my EPP course, my counsellors, my parents, my doctors, my physio and other healthcare professionals I meet. It has to be said that some of the aforementioned facilitate my self-management more than others, but I am certainly no island in my self-management.

"What is the best thing about being a patient?" - testing out appreciative enquiry

This post is my attempt to
be a Jolly Christmas Patient!

'Tis the season to be jolly . . . and so I shall be jolly, but about what?!

I recently attended a conference about public engagement and learnt about appreciative enquiry - an engagement technique that focuses on the positives. More about the technique can be found here. I am all for positivity and think that positive themes are key for good engagement, otherwise the whole affair can be rather depressing. Whilst the conference was aimed at a wider audience than just health, they did give a healthcare example for appreciative enquiry: "what is the best thing about being a patient?" Now, I am pretty keen to answer questions, and normally have a response for most questions thrown my way, but this one stumped me! I have been mulling this over over the last few days (assisted by mulled wine!) and have come up with more suggestions than I thought I would have . . .

Goals . . .

I guess everyone starts giving a few non-committal thoughts to the subject of goals around this time of year, with New Year's resolutions coming up. But I am thinking about it much more this year, having listened to Angela Coulter's webex on shared decision making, having seen this posted on twitter by Leeds & York NHS PFT (@leedsandyorkpft) . . .

Shared Decision Making webex with Angela Coulter

Today I joined the shared decision making webex hosted by NHS South of England and presented by Angela Coulter. It was good to hear the background and key principles of a term that is the real NHS buzz-word of the day I hear so often. Coulter made some excellent points and raised some questions for me which I wanted to explore further in this post.

Angela Coulter (The King's Fund)

She described shared decision making (SDM) as making "informed and personally relevant decisions", which for me captures the two most important components - information and individuals! SDM requires information, but the decisions I make with my doctor could very well be totally different from the decisions made by the next patient even if we are both presented with the same information. "Personally relevant" also encapsulates the wider social and emotional context in which disease takes place.

Don't we all self-manage? Active vs Passive self-management

After giving a talk to some nursing students, one student approached me and said that he had a long-term health condition (although he had never considered it as one, before the talk) which he thought he self-managed. This got me thinking about active and passive self-managing.

Although not obvious, self-management is really just common sense practical advice. Lots of us self-manage all the time in an informal way without doing EPP style courses. I self-managed before I did the course. But I was passively self-managing: I didn't think about it; it wasn't necessarily of the most benefit to me (mentally and physically); and it certainly was not optimal.

#IntegratedCare discussions with The King's Fund and National Voices

This morning I joined the Twitter conversation around integrated care that was hosted by The King's Fund and National Voices. There were a lot of interesting points made, which I wanted to capture here.

Integrated care had been a hot discussion topic for some time now, and whilst it was very encouraging to hear the issues raised, the next step is for some change! I agree with Nick Goodwin above, and sense there is a lot of old ground being covered, stating the obvious.

The Seven Deadly Sins . . . of a long-term health condition

I listened to an interesting discussion on Radio 4 Women's Hour with Jenny Murray about the seven deadly sins and their relevance to modern society. Having been created in the fifth century by a male Pope, they were questioning how much they still apply to us today. As they listed the seven sins, I found myself thinking that they all had particular relevance to me, living with long term health conditions.

The Seven Deadly Sins and the Four Last Things (Hieronymous Bosch)

All I want for Christmas . . .

Having spent an afternoon making Christmas cards, and had the annual "what do you want for Christmas?" question from a number of relatives, I have been thinking a lot about Christmas and what it means when you live with a long-term health condition.
So what do I want for Christmas? A new pair of legs that work, some eyes that can always read, a head that doesn't hurt, an arm that doesn't decide to stop working intermittently and a mind that isn't paralysed by depression for starters . . . . Before I even get onto Doctors that see me and medications that work . . .