Self-Management Support - another misconception...

I recently heard this when telling a clinician that my interest was in self-management...

"The trouble is that there are those patients who do it all already anyway and then those patients who just never will..." 

I couldn't disagree with this statement in principle (there are people at both ends of the self-management spectrum), but when shared as an argument not to engage in supporting self-management (as it was used), it couldn't be more floored.

Lets break this down...

When medications are necessary but not sufficient…

I love the question “I’m really interested to hear what things you have been doing or have tried already to manage your [symptom]?”

I always share it with medical students when I am lecturing, and use it a lot in my role as a self-management coach, when supporting individuals. But recently, the answers I have received in conversations locally have made me question our approach and thinking as a system to managing pain. It was summed up for me in a conversation I had with someone who wanted to manage their pain better. I asked what they had done already to try and manage the pain and a list of medications followed. After asking them about what other ideas they might have about how to manage the pain, I asked if I could share some ideas that other people have found helpful. After they agreed, I mentioned things like breathing and relaxing techniques and pacing, as they hadn’t been brought up in conversation so far. With all the ideas summed up, I asked what the person’s thoughts were, and their answer left me shocked…

I don’t think the suggestions you made will work, because if they did work my doctor would have suggested them to me already!

For everything else, there is MasterCard...

Yearly Pre-Paid Prescription Certificate: £104.00
Orthotics: £20
13 day inpatient stay, with MRI, CT and medications: ???
Neck brace and consultation with Orthotist: ???
Two days of tilt table diagnostic tests: ????

A supportive healthcare professional who understands: PRICELESS
Getting back sailing: PRICELESS

This Floats My Boat: Project Report

My two passions are sailing and self-management support, and last year I got the opportunity to run a project that combined the two! It took the most inordinate amount of work and really tested me. But I am really proud of the outcomes of the project and the steep learning curve that I've been on. 

The aim of the project was to extend the opportunity to sail through ‘peer to peer’ support for people with severe disabilities/long term health problems across Dorset, working with Chesil Sailability sailors, health and wellbeing groups and the ‘My Health My Way’ service, so supporting people to develop their confidence and therefore their ability to self-manage and take up and maintain healthy behaviours.

I admit it - I have overdone it.

I admit it. 

I have overdone it.

Despite preparing well before my holiday, two weeks after returning, I'm in need of another break. Because this time, I have not paced myself.
Despite getting ready to go away like a good self-manager, I utterly neglected to plan or do anything that resembled taking care of myself once I returned, straight back into two busy weeks and I feel totally floored and as exhausted as I've ever felt.

It has been a real crash landing back to reality, as on holiday I felt as if I could climb a mountain (not quite literally, but almost!). Coming back, just try to function each day felt like Mount Everest. It has been hard to manage the roller coaster of feeling so empowered and then so disabled by my condition in the space of a week.

So I admit I have overdone it. And I really hate admitting that!

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.

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.

Hearing it for the first time all over again

I live with several long term health conditions.

I am going to be living with these conditions for longer than it takes to get to the edge of the solar system (according the recent NASA Voyager announcement at least!)

Whilst I know that my conditions are neither terminal nor degenerative, I know that I am going to live with them for the rest of my life. 

I introduce myself to students I am teaching, fellow patients I support via Expert Patient Programmes and delegates I talk to at conferences as someone who lives with long term health conditions. 

It is even on my Twitter bio.

So why, when my doctor mentions that my conditions are "long-term" or that I am going to having to face this for the rest of my life, does it feel like he is telling me for the first time again?! Why does my heart break all over again, and all those emotions come flooding back?

What if....

The "what if....?" question can be my worst enemy, in two different ways. 

I have been doing a lot of reflection recently (prompted by some #patientleaders conversations), and with considerable effort, I have steered clear of the heart-wrenching self-searching questions like "what if I hadn't gone sailing that day and had the accident?", "what if I hadn't decided to see the Chiropractor?" and "what if I hadn't got flu that weekend at ended up with GBS?". There is also the other side of looking back through "what if" glasses - what if I hadn't got to hospital in time? What if I had been to another hospital where they weren't specialists in my condition? Maybe I am pretty lucky after all?!

Dear Relapse: a love letter

This post has been the culmination of a few little seeds sown over the last few weeks...
A tweet at the end of May from the extraordinary Dr Kate Granger (@GrangerKate) made me start to think about what is positive about our health situations:
"This week has been properly amazing. And it was all made possible by having cancer. There is definitely a #silverlining to all this..."

This post is also inspired by a few letters I have read recently, from a doctor to a chronically ill patient, from a chronically ill patient to a doctor, and by far the most powerful, a video produced by the wonderfully talented and creative people from Flack in Cambridge, the audio of which we used in our Quality and Recover workshop recently.
It's not often you have to write a letter to something that is so close to you, but I feel that it is a great chance to explore the relationship I have with my relapses.
For references, my relapses are triggered by travelling and sudden neck movements, and consist of loosing movement in my legs (and left arm). It is frequently accompanied by headaches, blurry vision and crippling fatigue for four or five days.

Getting back on my feet

As I knew I would be, I am paying the price with a relapse, having spend a wonderful few days in Paris. But having had a very active few days and a bit of travelling, this relapse is lasting longer than normal. Still not out of the ordinary, or any cause for concern, but I am sitting here thinking how I can going to keep going through it, get back on my feet and feel recharged at the end...

When physiotherapy is more that just exercises

This week, Mental Health Awareness Week, the Mental Health Foundation is raising awareness of the positive effect of exercise and physical activity on mental well-being. Reading about this (it is really so much more than just endorphins!), I am beginning to realise that when the Chartered Society of Physiotherapy talks about "physiotherapy helps to restore function", it means more than the function of limbs, it means the function of me as a person, both mentally and physically.

I have been very fortunate to be seeing an excellent neuro-physiotherapist for the past nine months or so. I feel compelled to write about my time with her, our journey together, because I believe that out of all the healthcare professionals I have seen, her input and support has made the biggest difference.

The biopsychosocial model of disease

The biopsychosocial model of disease existed in my notes... an excuse to get out the colouring crayons and draw a diagram, but ultimately another collection of facts that needed to be digested then regurgitated in the summer exams, something to be fitted in around learning about the important stuff - the science.
But the biopsychosocial model has come alive for me recently, now I realise what an impact the later two components, psychological and social, can have on patients.

In the 1977 paper in Science, George Engel introduced the biopsychosocial model:

"The dominant model of disease today is biomedical, and it leaves no room within it's framework for the social, psychological and behavioural dimensions of illness. A biopsychosocial model is proposed that provides a blueprint for research, a framework for teaching and a design for action in the real world of health care."

Following some conversations on Twitter recently and from my own experience at medical school and now as a patient, I wanted to explore my thoughts on this model.

Feeling stressed about being stressed!

Living with chronic illness is stressful. For many reasons.

Medical appointments . . . trying to hold down a job . . . the symptoms . . . missing out on life while trying to 'pace yourself' . . . fears for the future . . . knowing that being stressed makes the condition worse (cue downward-spiralling circle) . . . running out of prescriptions on a Friday evening . . . knowing you have a relapse coming . . . etc. etc. etc.

Keep Calm and Carry On (Self-Managing)

Being an Expert Patient Programme tutor is a pleasure and a privilege. It is a fundamental part of my own self-management - it gives me purpose and keeps me going. It is fantastic and moving to see people change for the better and their world open up to possibilities. I got an enormous amount out of the course when I did it, but when I recently finished a course, I found myself feeling very envious of the participants. They left on week six with such a moving wealth of optimism, hope and every thing else that comes with a fresh start and new leaf. Why was I envious?

The Patient Patient: what's in a name?

As I blog as the Patient Patient, I have been thinking about what that actually means - being patient and being a patient - and went to dig out the dictionary on my shelf. I know in previous posts I have defended going into detail about semantics, but when the word 'patient' is so defining for me as a person (and many other people) I don't feel the need to apologise about the geeky wordy nature of this post!

Delving into my dictionary, the definition for patient as an adjective is 'able to wait without becoming annoyed or anxious, bearing or enduring pain with calmness, or without complaint' and in an archaic usage, it described 'one who is suffering', and the Latin origins are from 'one who suffers'. As a noun, patient refers to 'a person receiving or registered to receive medical treatment'.

As the patient patient what am I?

The Power of Twitter - Patient Power

This question was posed by Dr Black in her UCLLHL lecture today. These lunch hour lectures from UCL are often fascinating - see my post on Prof Barber's non-compliance lecture and the full schedule of future lectures here. She was talking about the power of Twitter (in lots of different contexts from fundraising to marketing, to socialising and researching), and left me inspired to be more creative with my use of Twitter. She also got me thinking about the power of Twitter and me being me, thought about it in the context of when you are a patient....

A Healthy New Year?

The saying may be just a phrase that everyone says to everyone else at this time of year . . . But wishing me a 'healthy new year' is particularly hard to hear this year. I know health is a subjective thing, but when you have a long-term condition, all the fresh starts of a new year are not going to make you healthy again! It seems a rather insulting comment from family and friends who I know haven't grasped the time-frame of my illness - I'm not going to get better! The time-frame of long-term health conditions is hard for people to understand, and their lack of comprehension and the comments that result are one of the most annoying things about LTCs. But can I find some truth or hope in the dreaded phrase - a 'healthy new year'?

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.