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.

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.

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!). 

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.

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.... 

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.

Transforming patient experience, WITH patients

I had the privilege of speaking yesterday at the King's Fund Transforming Patient Experience conference. The opportunity to speak about the role that patients can play in improving this has made me think more deeply about both what we can bring to the improvement process as patients, and what some of the challenges are. This post is a summary of the topics I covered in my talk. An abridged video of my talk is available here, thanks to the King's Fund.

Personal Reflections on The Future of Health

The two days I spent at Future of Health (and the following few days recovering) have been the hardest, busiest, most challenging, intense, overwhelming and exciting couple of days I have ever had.

Let me explain...

Long Term Conditions

I am a passionate advocate for meaningful patient involvement in all aspects of health care.
With conferences as the melting pot of new ideas, it seems only right that contributions from patients themselves are added as essential ingredients into the melting pot. I have commented on this after attending most conferences - where were the patients?
One new idea for involving patients in conferences is being tested at the NHS England/UCL Partners Future of Health conference in October. A Patient Jury, a panel of patients and carers, will provide comment and feedback on the presentations and workshops through the two days. I am excited to have been asked to be part of the Jury and am hopeful that it is going to provide a model for patients and carers to be integrated into the discussions at conferences. I will be posting a follow-up blog on my experience of being on the Patient Jury - to pass my final verdict!

Two weeks, two conferences, lots of ideas, but one thing missing...

The whole 'pacing yourself' self-management malarkey is all well and good, until really interesting events start to appear in your diary.... Then it all seems to out the window and I go to two conferences in 8 days and physically pay the price. But it is a price worth paying, as I have been lucky enough to enjoy two fascinating and stimulating days, meeting a whole array of wonderful and inspiring people, although one key ingredient was missing...

Shoosmiths Improving Care conference

I recently had the opportunity to talk on behalf of the Patients Association at the Shoosmiths Improving Care conference, held at the Kings Fund in March. It was a very interesting day debating the topical issues around care. I was the last speaker of the day and wanted to bring everything together, focussing on the patient.

 

Thank you to Shoosmiths for organising a stimulating day, the opportunity to speak and for producing the video above.