Monday, 24 September 2012

Mind Your Head Challenge

In August I attended the Mind Your Head Challenge in Dorset - a day around keeping mentally fit and active. Some interesting ideas came out through the day:

Mental health creates a £105bn drain on the NHS - higher than heart disease and cancer combined. Seems that message has not reached those commissioning services in the NHS!

It's all about journeys: the end result is often less important than the path and process of getting there. Obviously there are exceptions, but it does provide some comfort as my life takes a very convoluted route to nowhere, blown off track by LTCs!

Ten years ago the cost of stress in society was valued at £85bn. I would hate to guess what the revised value be for now?!

We have one mind and one future - the two are intrinsically linked! Such a good phrase highlighting the importance of considering the mind when treating physical conditions.

Some food for thought!

Another gem in the Times

Melanie Reid, journalist in The Times and author of Spinal Column in the Saturday Magazine, is a great hero and role model of mine. Every week she captures my sentiments and moves me. Although my condition is nothing in comparison to hers, I feel she talks in such a human and honest way. One of the main reasons I look forward to Saturdays!!!
Melanie Reid (Source: The Times)

This week she was talking about things she can no longer do and said this which struck such a chord with me:
"Action woman can't plan action when she no longer exists, except in her memories."

Last week she talked about the (lack of) off-buttons. "no, this isn't believable. This is too much - it's just too far fetched, and you reach out to hit the off button on the TV remote. Except you can't; because what's happening is for real. . . . The terrible but where you shake your head and change TV channel. Except we can't."

Another feeling I am quite familiar with, put into words in such an accurate and honest way!

I am so sorry for all that Melanie endures, but so grateful that she has the courage to verbalise these sentiments in a national paper for us all to share, because we do all share the sentiments, don't we?!

The Role of GPs

I promise I do more at weekends than just read The Times, but I would be lying if I said it wasn't a key feature of a Saturday morning!

On the 15th September, Matthew Parris questioned the role of GPs after spending some time shadowing them. He titles his article "GPs will soothe you , but won't really cure you" - quite provocative but delving deeper the article had some interesting points.

"Easily the principle cause of so many of the problems patients brought to the surgery lay in the mind, not the body. Loneliness, isolation, anxiety, stress, breakdown and mental: these are what ailed the weeping woman, they hypertense young man, the fellow worried sick about snoring or the last with shaking hands."

"what makes a family doctor indispensable is local knowledge, local involvement, long service in the same community, the kind of continuity that helps you to know your patients as people and families, and the pastoral, counselling and psychiatric skills that count for as much as medical expertise."

I agree with the description of the profession Parris gave, and the fact that he identified the emotional backdrop to these conditions. Isn't soothing what we often crave?! A little human reassurance is the only option when there is no cure. Often GPs have little option it to "just soothe you", but if they do achieve soothing, that is an achievement and a mark of a very good GP! Don't loose the importance of emotional support in the midst of medical and scientific technology, diagnosis and treatment!

Sunday, 9 September 2012


The oversized ParalymicsGB flag is still draped over a chair in the kitchen, and weekend paper supplements still litter the house - it is safe to say we are finding it hard to say goodbye to summer of sort we have had! Th Olympics were everything we thought they would be, but the Paralymics really delivered the moments of the summer plus do much more!
I was lucky enough to spend several days in Stratford watching some of it, and the excitement and passion of elite sport was there in abundance, but this was elite sport PLUS! Watching it was by far and away the most moving, humbling, inspiring and motivating thing I have ever seen! To see these athletes perform is such a privaledge, to see them excel and despite everything. It had a very personal message for me; I can do sport, I just haven't found the way yet!

Legacy is such an overused hyped-up word, but I had my own private legacy - overnight (well, in the space of 4 days in the Olympic Park) I went from being really ashamed of my stick and orthotics to not worrying about been seen out in them at all! It is soo liberating, and I only hope it lasts!

Amid all the awe of their performances on the field I was struck by a slightly pessimistic side - will everyone think all disabled people can do everything?! Again The Times answered my call and during the Games featured an article detailed all the medical assistance and care these athletes needed - it was so refreshing to hear about the boring and mundane side of disability and brought hope the reality of lives for these athletes when on the track or in the pool. A little dose of realism amidst the glorious celebration that was strangely very welcome!

The people we watched in London 2012 are the pinnacle of their populations - not all Somalian refugees can run 10,000 that quickly, not all Jamaicans can run 100m in under 10 seconds. The dames applies for disabled people! They are the rare cases just as able bodies athletes are among normal people!

Channel 4 did impress me with their coverage, but one part left me distraught - a wheelchair athlete was asked if would turn back time and avoid his car accident that put him in a chair. With our ANY hesitation he instantly replied with 100% confidence that he would not. I spent a long evening debating if I would want to turn back time - the answer is far from certain, but certainly verges towards "yes I would change things". Would I ever be in a position to answer that question with the confidence that he did?! I don't know, but boy is it a good thing to aim for!!!!

I admit I have more than a few thoughts around "having no legs seems so easy compared to my conditions", "would I rather loose a leg?" . . . What is easier?! Well, neither! They all have different challenges and limitations. It is not a case of comparison - but despite differences, the inspiration should be equal for all!

Role on Rio 2016!!!!!

Wednesday, 5 September 2012

Meaningful Patient Involvement and Feedback

The opportunity to be involved in the design and running of healthcare services in one of the patient rights enshrined in the NHS Constitution. Patient involvement is now very much (and quite rightly) coming to the forefront on the minds of those in charge of the NHS. As a patient, I think this is brilliant. Gordon Browns vision of user feedback like on eBay being replicated in healthcare is slowly being realised.

The key to ensuring that this is not just a tick-boxing exercise to enable patients to exercise that right, and to show willing to "listen", is to USE their feedback and contributions. The caveat here is that it has to be in a format that facilitates such use.

For example, having just sent considerable time trawling though NHS Choices and Patient Opinion feedback websites, it is clear that patients are keen to feedback and contribute. However there needs to guidance as to how their feedback is actually used - to act as a prompt on how to best fill out the forms. For example, when asked what could be improved, there were countless answered with just "everything" or "food" or "staff". Although that is possibly true, it is not conducive to using that feedback to promote change - what exactly needs changing? With the threat of feedback-fatigue across the nation, feedback really does need to be used. Without blaming NHS managers for not using it, the system of collecting feedback needs to be revised so that what is collected can easily facilitate change.

The second issue is around patient consultations on new service designs. The process of developing a new service is very complicated - tendering, market, provider and commissioners make for a confusing landscape! In asking patients to help inform the NHS. they need to understand the background and reality of the environment which is the backdrop to their decisions.

But the balance is hard to achieve - the need to grasp these concepts can isolate and exclude a number of patients that want to contribute. Patients with learning difficulties are important service users and therefore a critical group to engage without smothering in NHS facts!

I'm not sure what the answer is! But I know that 10 months ago, if I was asked about my healthcare services, I would have launched into a rant and diatribe of personal anecdotes with which anyone would have been pushed to find constructive use!!!

What stops us taking responsibility to care for ourselves?

Self-management is about taking responsibility for caring for ones self. Although not easy or always successful, self-management does present a framework for responsibility and caring. In that pre-EPP course time, what prevented me from taking that responsibility? Now as an experienced self-manager, what stops me looking after myself every day?!

I am inclined to say that it is because we are all human, all have lazy days and so on. But although that may account for the odd day or two, I do think there are much bigger issues at play. Timing, expectations and the structure of the healthcare system may all be involved, but I think fear is the main one.

Taking responsibility for our care means that if something was to go wrong, who can we blame? This is not to focus on the blame culture of
Modern society, but on the paranoia of patients with LTC not to do anything to make their conditions worse. I for one dread the prospect of having done something that has made me worse and kicking myself for having done it. I am sure I am not alone in this sentiment.

My care is important but I don't really know how much I trust my self to have control over it. On those bad days when it seems the whole world is against you, do I trust myself enough to make decisions that really are in the best interests of my health? Do I even know (on a good or bad day!) what is best for myself?!

Responsibility of care should not be an all-or-nothing concept - it should not lie with either our healthcare professionals or us as the patients. Sharing the responsibly and knowledge is the best solution, and will make that leap of faith into self-management more appealing. Shared decision making crops up again!

How to explain the psychological aspects of LTC

I recently gave a lecture to Cambridge medical students about the realities of living with long term health conditions and the theory of self-management. One of the point I really want to get across was the impact that LTC have on your mental health, and the close interaction between the two. What I wanted to dispel was the "it's all in the mind" attitude. I needed to convey this idea in a context they could comprehend - in their language.

I came up with the term "psychological and emotional side effects". I am sure others have thought of this before, but it really summed up the issue for me! The stress, anxiety, depression, anger and sadness that all accompanies a LTC really are all side effects. Like some drugs, the side effects can make the initial complaint worse - that certainly applies with these particular side effects!

The analogy applies up to the treatment of the troublesome side effects. If induced by medication, there are several options: medication can stop; doses lowered; more medications to stop the side effects; or relief that it means the medications are working - unfortunately none of these apply to the emotional and psychological side effects of long term conditions. The precipitating factor can not be removed, or reduced, and treating them with more medications doesn't deal with the root of the problem. These side effects are quite normal, but debilitating and distressing nonetheless.
Managing these side effects require a great investment from the person themselves. They need to acknowledge the cause, and develop coping strategies - which is where self-management comes in. As well as managing medications, these patients have to learn how to control the psychological and emotional side effects by teaching their brain to work productively alongside these unwelcome symptoms - the most debilitating part of a LTC.