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.
Categories: medical research