The novelty of a short term health condition - from the perspective of someone with long term health conditions

A few weeks ago I had an inner ear infection, labyrinthitis. The worse of the symptoms were only for four or five days, but it lasted about 3 weeks in total. It was a short-term health condition. This meant that many aspects of those few weeks were in stark contrast to my day in day out experiences of long-term health conditions.

Dear GovNet Advisory Board, This is Groundhog Day, From a Patient.

Since this letter has been published, it has been brought to my attention that there were speakers who had long term health conditions. They were listed in their professional capacity with specific organisations to talk about their organisational experiences rather than from a patients' perspective. Although I can no longer say there were no people with long term conditions at the event, the sentiment of this letter, where the day to day on the ground experience of everyday people with long term conditions was lacking at the event still absolutely stands. I refer to David Gilbert's blog, "We are all patients. Yes and no." to explain this subtle but important difference.
From my perspective, the event still didn't have the opportunity to hear directly from people with long term conditions or carers about what matters to them, and that needs addressing. 
My apologies if I have mislead anyone. 

Dear Rt. Hon Lord Foulkes of Cumnock, Baroness Hilary Armstrong of Hill Top, Lord Archy Kirkwood of Kirkhope, Sir Robert Worcester KBE, DL, Lord Goodlad KCMG PC and Cheryl Gillian MP (GovNet Advisory Board),

As the Advisory Board for GovNet, I wanted to let you know about the Long Term Conditions 2016 conference that took place today that was run by GovNet.

A Spoonie Guide to Moving House

I recently moved house. For most people, moving house is commonly described as one of the most stressful and exhausting things to do. So how do you manage when you are often exhausted by even very little things?!

I am very lucky to have the wonderful and wise Karen (@GleefulKaz) on the other end of a Skype line. She talked and coached me through my thinking about how I was going to manage moving house! I am writing this my new place, totally exhausted, symptoms flaring up but just about functioning! I would be so so much worse if I hadn't planned and been supported by Karen!

Here is my top ten tips for moving house when you have a long term health condition and live with fatigue!

PROMs, PCOMs and mind-melt!

Last week I was invited to the Health Foundation's two day workshop on measuring the outcomes that matter to patients. My tweet from the final day sums it up... 

Since then, I've had a chance to digest the pages of notes I made, and I wanted to blog to share my thoughts and reflections on measuring what matters to people with health conditions (long term, acute or otherwise!). 

Too much process, not enough conversations

This blog was written in response to this BMJ Head to Head debate on whether GPs should be paid to reduce unnecessary referrals. 

As someone living with long-term health conditions, I want the NHS to be both ethical and financially sustainable. It shouldn’t be that those two characteristics are mutually exclusive.

As a self-management coach for the NHS working with people with long-term health conditions, I often see people desperate for a referral or fed up with too many different referrals. Those two sentiments aren’t necessarily mutually exclusive either.

My interest in this topic lies not with the processes that seem to be driving the arguments, but about the conversations that happen between GPs and their patients and how referrals are discussed and decided upon.

The cost of emotions on our spoons

Before reading further, if the term 'Spoon Theory' is unfamiliar, please read this post by Christine Miserandino!

I use the Spoon Theory personally to help me think about what I do each day and how I use my energy. I also share it as a resource in my role as a self-management coach with the people with long term health conditions who I support.

Recent personal experience and that of the people who I support has made me see that I need to consider more broadly how I use my spoons. This has been a very interesting thing for me to be aware of - seeing as I spend so much of my time talking about (in less theoretical terms) the biopsychosocial model. Managing my health is about the physical things, but equally, the emotional and social (or day to day) impact that my health has.

My Grandma and her self-management (Twin Blog with QISMET)

This is part of a twin blog with QISMET. Read the other part of this blog here.

We had my grandmother staying with us for Christmas, and I was lucky enough to help her celebrate her 92nd birthday just a few days later. She is very remarkable woman. She has brought up a family on a different continent, supported her local community, had a range of different jobs and has as my mother says ‘never lost her sense of curiosity and interest in the world around her”. Although since she now has arthritis, high blood pressure, eye sight problems, that world around her has shrunk somewhat.
Whenever I try to think about different people accessing the NHS as patients, I often think of her – how would Grandma cope or what would she make of this fangled new NHS initiative? I tend to come to the conclusion that we want very different things from our NHS and behave very differently as patients – call it the generation gap.

But spending time with her over Christmas after a few conversations in 2014 about self-management in older generations made me realize that we were quite similar after all as patients – we are both active self-managers!

Emails - a sign of trust?

I have the email address of my GP as his patient.
The people with long term health conditions that I work with as a self-management coach for the NHS have my email address and work mobile.

Although I am not working in a critical clinical role like a GP, I feel that being on both sides of the 'provider-user' fence on this one has given me some insight into to arguments about to give out email addresses to patients or not. It all comes down to TRUST.

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!

Q&A from Southampton University Seminar

This week, aided by some very simple technology, I contributed to a seminar at Southampton University with Trevor Kettle about the full scope and continuum of patient involvement.

It was a privilege to talk to the students with a very interactive Q&A session. The questions were really challenging - a good sign! So here are my answers to some of the questions asked...