Saturday, 30 July 2016

Self-Management Support: Everyone's responsibility but no-one's job?

At an event recently of very senior Trust types, I started my talk by asking how many of those in audience had self-management support in their organisations - specifically a service, or someone with a role to facilitate it. In a room of about 70 or so, there were about 5-10 hands tentatively raised.

Are we in the era of self-management being 'everybodys responsibility but nobody's job'?

That’s Not My Job 

This is a story about four people named Everybody, Somebody, Anybody and Nobody.  There was an important job to be done and Everybody was sure that Somebody would do it.  Anybody could have done it, but Nobody did it.  Somebody got angry about that, because it was Everybody’s job. Everybody thought Anybody could do it, but Nobody realized that Everybody wouldn’t do it.  It ended up that Everybody blamed Somebody when Nobody did what Anybody could have.
I can't help feeling that the fifth figure of the right is how we feel as patients in this situation... and am reminded of the saying about elephants fighting and the grass getting trampled.

Wednesday, 13 July 2016

Red flags on a Monday morning…

Before 11am on a recent Monday morning, I felt in need of another weekend.

I was chairing a group of patients and carers, who meet to review transformation programmes locally.

In preparation for the meeting, I had spoken to the speaker to check timings and they were clear about what they wanted to discuss and how to do that. I was assured all was ok!

The meeting started well, and the first item on the agenda was introduced – prioritizing areas of a specific programme for in depth co-production engagement work. With 40 mins set for the item on the agenda, the first ten minutes quickly disappeared with an introduction on the process that got the programme to where it was that day, and the questions starting flying in… and my internal chimp mind (the italics below) went into overdrive and concepts of mindfulness went out the window.

Sunday, 19 June 2016

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

Tuesday, 31 May 2016

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.

Tuesday, 5 April 2016

Whatever the question, I'm not sure leaflets are the answer...

I am a magpie for leaflets... anywhere I go, I try and pick some up. This is primarily because of my role as a self-management coach, having a 'resource table' of leaflets at courses I run and generally wanting to keep in the know about what is available in terms of information and support for the people that I work with.  I am not normal in my approach to leaflets.

Saturday, 13 February 2016

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.

Thursday, 21 January 2016

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.

Tuesday, 22 December 2015

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!

Sunday, 13 December 2015

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!). 

Monday, 30 November 2015

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.