What I used to really think about self-management...

Working as a self-management coach, supporting others to self-manage more confidently, has given me plenty of opportunity to explore the barriers to self-management from the patients perspective. This has prompted me to reflect on my concerns as I embarked a few years ago on playing a new role in managing my health by taking a more active and helpful role… I've tried to think and be as open as possible about the concerns I had about self-management back then, and I'm aware that some of the comments below might have me have seemed (or still seem) like I am/was a sympathy-needing and mentally-unstable weakling, but it is my honest thoughts, shared because I hope they will help others help others embrace self-management. I make no apologies for that fact that this might be controversial, and that not all people will agree with me. These are just my experiences from a few years ago that I'm now ready to share. 

From Person to Patient to Person Again

November 2010 was when I stopped medical school in my fourth year and each year, November is when I return to my old university to lecture to 4th year medical students. For me, this is even more of a point of reflection on the last 12 months that the 1st January.

When I started lecturing it was very much focused on my experience and the challenges of that, but this year felt very different and a quantum leap in terms of my own journey when I felt confident lecturing and chose my title this year “From person to patient to person again”. The fact that I felt able to talk about this (basically the biopsychosocial model and self-management) in that venue is quite special. The lecture theatre was one I was lectured in as a student, and on site at the teaching hospital where I was admitted to A&E when my health first started to deteriorate. Driving up the main drag into A&E hardly breathing isn’t a strong memory for me, but the fear in my fathers voice as he kept asking me to blow bubbles so he could see that I was still breathing still sticks with me. Now I am able to go through that same road and experience a very different set of emotions as I approach the Medical School to lecture instead. 

Pupperty

On Thursday last week I was at an event where a professional really honestly said "I'm not really sure what working with patients mean". I appreciated their honesty and mentioned that it is often harder to describe than it is to feel, and sometimes easier to explain what it isn't.

Last week also proved the culmination of another experience where "involvement" was a very visceral feeling of extremes.

Raising the Roof of the House of Care

Today, I collaborated with Alex Kamadu (@AlexKamadu) from NHS IQ on a joint presentation at BDA Live. It was a bit of an experiment, but we felt that collaborating, as a patient and professional, on the subject of managing long term conditions was appropriate. Here is a summary of our talk, which we hope illustrates how both patients and professionals are on a journey of activation together.

Patient Leaders, Posters and Possibilities....

For me, a "poster" was something like this.... And a "paper" was something like this....

But in the world of academic conferences, they mean something very different. A poster is a very visual and accessible way of presenting a piece of work and a paper is actually a 15 minute talk! The point of these at conferences is to share great work and ideas.

Self-Management: It isn't just for patients

Last week I had the honour of delivering a lecture at the College of Medicine Summer School, 'Self Care & Resilience: How can we care?'. This blog post is a summary of my lecture.... 

Tate Modern, Mattise and self-management

A few weeks ago, I treated myself to the Matisse Cut-Out exhibition at the Tate Modern. My interest with the exhibition began with a quote of his I caught in a weekend paper, saying "only what I created after the illness constitutes my real self: free, liberated." Fascinated by the idea that someone could create their best work when ill, I booked a ticket.

HEA Powerful Partnerships Summit

On Wednesday this week, I attended the Higher Education Academy's Powerful Partnerships summit in London. It was a day to explore how partnerships (between many different people, but you can guess that I was there championing patient partnerships!) can support and promote excellence in medical and healthcare education in the UK. There were plenty of tweets during the day (#ppsummit) and food for thought. I was asked to present providing a patient perspective on what needs to change in education of health care professionals.

To disclose or not to disclose?

This post isn't about being secretive, but about the boundaries of privacy and thinking about what we expect from patients when they share their experience and insights. So, I've been wondering for a while..

How much of my role as a patient leader is about my conditions? Is disclosing them essential to my story, insights and contributions? 

The who, what, why, when, where and how of PPI in Meded

I recently had the pleasure of giving the plenary session at the BeSST (Behavioural and Social Scientists Teaching in Medicine) one day conference and AGM. With a brief to explore how patients, carers and members of the public can contribute to medical education, I went down the who, what, why, when, where, how route. As promised, here is a blog to summarise the key points of my plenary session.

Partnerships are possible

I've recently had the privilege of working in a great collaborative partnership with two different professionals: Alf Collins to write an editorial in the BMJ on the Oldham Commission; and Trevor Kettle to co-design and co-deliver workshops on patient and public involvement in healthcare professional education at Southampton University.

I know there is a lot of talk about what it feels like when patients and patient leaders aren't able to work in these kinds of environments, so I wanted to document what is feels like when it does work - to prove it is possible!

Optimising my self-management

I try and go on my recumbent exercise bike (a godsend for those of us who are orthostatically challenged like us POTSie's) regularly and normally manage several kilometers while reading the paper. I often wear my slippers and PJs.

So I do get on a bike, but what have I got in common with Froome and Cavindish et al of Sky Cycling Team? 

Time to Talk

It has been more debilitating that any of my physical symptoms (including loosing movement in all limbs).
The side effects from the medications have been among the worst I have had.

It has flattened my ability to look after myself and self-manage my other conditions. 

The other 'treatments' have been the hardest things to do.

Maintaining the helpful management techniques each day often take all my energy & willpower.
I can't look after my other health conditions without addressing it., 

I find it surprisingly hard to utter the word itself out loud when referring to myself.

Getting my head around 'functional neurological symptoms'

I have a number of firm 'medical' diagnosis to explain the bulk of my symptoms, but one of my symptoms is currently free falling into the category of "functional neurological symptoms" and I'm facing the medically unexplained head on. Gulp.
 

I say it like it is something new. It isn't. Ever since I have has these particular symptoms (intermittent weakness in my limbs), the doctors have been at a loss to any reason why. I think I knew deep down that there probably wouldn't be a nice tidy diagnosis to explain it, but it has taken a year or two for that feeling to bubble up from my sub-conscious. But here is it in clear daylight.  

The aim of this blog post isn't to indulge myself, but to raise awareness and try to explore some of the stigma associated with this area of neurology. I know there is low awareness and high stigma, because it has been a step learning curve for me and I have stigmatised myself about it frequently.