The 48 hours when I didn't think self-management worked...

I had about 48 hours mid-2016 when I honestly thought self-management didn’t work. Everything that I had based the last 5 or so years of my life (personally and professionally) was a lie. Those 48 hours painfully passed, and left me with a reaffirmed understanding of self-management and belief in the process.

That invisible way stress accumulates, that way you start to be aware of it and think that you can cling on until X or Y and then you can rest and sort it all out… and then very suddenly, you can’t and it all crashes down around you. I had what I can only describe as a the worst panic attack, but it was nothing to do with panic and more a depression attack, but with all the standard panic attack symptoms. Typical for me, with my history of major medical events, this happened whilst I was out sailing. Whisked away by my (utterly brilliant and unconditionally supportive) parents to my grandmothers house, a real safe haven for me, I was in shock and quite numb. Everything had just got a bit too much, and I had burnt out. 

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.

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.

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? 

Does it matter how we acquire knowledge and expertise?

Knowledge and expertise are two very topical words in healthcare at the moment, but I want to challenge how we perceive and value them.

In the Collins English Dictionary that sits on my shelf, knowledge is defined as the 'facts or experiences known by a person or group of people', whilst expertise is defined as 'special skills, knowledge or judgement'. It surprised me to read that knowledge could include facts and experiences - the traditional paternalistic medical world seems to define knowledge as facts and dismiss experience. If knowledge can really truly encompass experiences, then my favourite term, experts by experience, is very much valid!

This wider definition of knowledge is slowly becoming accepted in the medical communities. I feel that we are moving away from the culture of "Doctor knows best". The knowing and knowledge to which that refers is very narrow (national clinical guidelines, drugs and tests, and the pathology of disease) but medicine is an art and science and a broad one at that. Accepting that knowledge covers both the facts, known best by the clinicians, and the experience, lived by the patient, we can turn the doctor-patient relationship into an equal one, and the perfect environment for shared-decision making.