You may recall a few weeks ago the new NHS Chief Executive, Simon Stevens, referring to patients and carers as the ‘renewable energy’ in health and social care. A good notion. A noble notion.
Yet I am having far too many conversations at the moment which are with, or about, colleagues who are flat-out exhausted by the demands being placed on them. An increasing number are taking themselves out of the picture either permanently or temporarily for their own well being. That’s if they can. Not all of us have this choice.
This can’t be right. What are we doing to people?
When I think of the overdrive that NHS organisations have gone into to ‘capture’ (now there’s a telling word) the patient experience a certain image springs to mind. It is the scene in the film version of H.G.Wells’ Time Machine of thousands of people in the future being called by their overseers and disappearing into the mouth of a huge cave. They are never seen again.
It is of perennial shame that, in our health and social care system, patients and carers generally feel taken for granted when giving their wisdom willingly to make the system better. It’s not just about expenses and reimbursement either. Pastoral care is in short supply. Roles that are supposedly about one or two days a week become 24/7. You will be lucky to find a decent volunteer policy in place.
It can be frightening, exhausting, dispiriting and frankly bad for one’s health to be plying the lone furrow of public involvement. All seems set against you. So you try harder, thinking that any failure must be your fault. Until, before long, you are stuck in what can only be termed an abusive relationship where everything you do feels taken for granted. It’s no way to treat citizens. It’s the surest way to achieve burn-out.
And it can be similar for the increasing numbers of people who are now doing paid roles in public involvement. In fact, I worry that these colleagues sometimes feel further stigmatised by those they serve because they receive a salary – how dare you take money, you can’t surely be on our side if that’s the case?
It’s one of the reasons I was keen for INVOLVE to bring together public involvement leads from across NIHR to meet and network and find support. 130 of them will meet in London next week and I hope that by nurturing and supporting these colleagues we can ensure patients and carers do receive the support they need in the future.
If patients and carers are really the renewable energy in health and social care then perhaps we should extend that analogy to think about everything that goes with it to make it happen – tax breaks, investment, fast-track planning permission, a Government Minister for. For at the moment this is not a win/win for patients. Only a win for a system that’s turning ever-faster.
One last thing. The best bit of my week so far was a coffee and chat with a good friend and colleague. It boosted my spirits no end. Afterwards he emailed and signed off ‘we must take of ourselves – no one else will.’
Take care of yourselves. But let’s take care of each other as well.
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Simon Denegri's Lay Review 
This of course resonates with me. I did some intense work last week and have been suffering for it since. I read this from my sofa from which I am struggling to move due to tiredness. It is rarely acknowledged that the level we are at is quite unlike the “volunteering” PPI of the past and that is a good thing. However, we are often still treated as though we are going a bit of good work in our spare time happy to do so for nice glow we get at being useful. When I am asked to run a “challenging” workshop it means going into the most traumatic aspects of my “patient” experience. I retraumatise myself on a regular basis as I can see the power this has to drive home the points I am making. It is not a “job” from which I can switch off easily. I need a lot of support, debriefing and a long recovery period. The best organisations acknowledge and work with this such as my experience with the Kings Fund Top Managers’ Programme in Hampshire last week and the worst fail even to consider that experience worth a cursory “service user” payment. The most difficult are the assumptions – when it is simply assumed that professionals are on top and patients are on tap.
There is a huge difference between attending focus group or consultations once in a while and people who spend long days working with professionals to try to bring about change. Relapse in our conditions and even burn out become par for the course and yet we keep on going because of our belief in what we are doing.
It is not a bottomless pit of resources into which organisations can tap for next to nothing. It is a finite resource and one that I doubt the NHS can really afford to lose.
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Yep, resonates with me too. So far this year I have done countless interviews for newspapers and magazines, spoken at 3 conferences (which necessitates that I delve into the painful memories of being a full-time carer for my mum when dementia dragged her deeper and deeper into psychosis), attended countless fund-raising events, shared my experiences at 3 Supporters’ Days, helped recruit Corporate supporters, spoken on terrestrial and international TV and radio almost every time anything remotely connected to dementia appears in the News, been a guest blogger on several websites and spoken to hundreds of University students. I’ve been doing this for 9 years now and I do it in the hope that we can bring about a change in the way mental illness is viewed and to garner more money for research into dementia. At least nowadays I often get reimbursement for my travel expenses. All that is quite apart from my fund-raising activities (5 marathons and counting so far this year) and then I hear someone refer to me as a “Charity Fun-Runner”!!!!!
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