I read something a little while ago that made me smile. Somebody at NHS England has come up with the idea that a good way to create change within health is to re-invent aspects of it as a social movement. It wants to “shift power to patients and citizens” and in doing so “improve health and well-being”. This is a good thing and it wasn’t the principle of it that made me smile – it was the idea that you can create a social movement with an institution. Institutions don’t create social movements they resist them. Regardless of how moral, dedicated and well-meaning we may believe an organisation to be, its ultimate loyalty is to itself, its power and its continued existence.
Looked at in the round the NHS is undoubtedly a force for good in our country, run by thousands of incredibly dedicated people, but it is not a champion of social movement’s it’s a Leviathan. And like all powerful organisations if you resist it – it will protect itself and those who are loyal to it – and it will crush you. It doesn’t really matter if you are the loved one of somebody who died as a result of a patient safety incident, or the family of somebody held against their will, the power of the institution that you are confronted with is overwhelming.
The thing about social movement’s is that they can’t be managed into existence – they grow out of need, injustice and conflict. For the families of people with learning disabilities and ASD who are locked in institutions the need for a social movement is enormous. Whilst the numbers of people detained in hospitals has decreased over recent years our societal willingness to lock people up simply because we aren’t prepared to do what it takes to include them is undiminished. Of the 2600 people currently locked in institutions most do not need to be there and the fact that they are is simply a measure of systemic failure.
Over the last few months I’ve been working on a website for the sevendaysofaction families and for those of you who don’t know, sevendaysofaction is a group of families (and practitioners) who are struggling to get people with learning disabilities and ASD out of in-patient hospital provision. Anyway I think it was in the context of this work that I thought that the NHS’s attempt to dress itself in the clothing of a social movement was particularly ironic. For most of the families the Leviathan dominates their lives – it has taken their loved ones and it will not let them go and for those of us who have not had our sons and daughters taken – it is still omnipresent. A kind of implicit threat. You may be struggling to support your daughter or son in the context of shrinking health and social care budgets but don’t worry – if you give up we’ll find the cash to fund their much more expensive hospital provision and once they are part of that particular cash cow you will find it incredibly difficult to get them out.
In the face of this intransigence; this Leviathan, families have struggled in isolation. Often a single individual in a room full of practitioners, discussing their loved one in a meeting dominated by the language of law, regulation and professional practice. And in the context of that meeting the knowledge and insight that only a parent can have – is invariably lost – crushed by professional discourse and with that loss often goes that key piece of knowledge and insight needed to get people back into their communities.
For me SevenDaysofAction is about the struggle to have that knowledge listened to, respected and acted upon. As I have said elsewhere we are not experts by experience, somebody to be heard, nodded at and then ignored – we are experts in the decision that you are about to make. If you are a responsible clinician and you make a decision that a parent fundamentally disagrees with, then there is every chance that you are making the wrong decision for that individual. It might be justifiable in law, or within the parameters of your professional practice but at a human level the stats are probably against you.
So how do we empower the voice of families in the face of this ? Well that has begun with the first SevenDaysofAction campaign and we’ll take it forward with our campaigns in the future and with the website. It’s going to take some time but these are the foundation stones and as far as the website goes the strategy underpinning it is probably easiest to express as a metaphor.
Imagine you are a parent at a meeting and instead of speaking your perspective – you have to sing what you know. Some people could do it really well, they would know exactly what it is that they are going to sing, they would sing in tune and because of that they would do it perfectly. Because of their virtuosity it is much more likely that they would be listened to. But what if, like most of us, you aren’t that good at singing? Your expertise and the things that only you can know won’t even get heard and would be lost amidst a flurry of flat notes and embarrassment.
Now imagine, that like a prractitioner you were supported by an infrastructure that gave you access to the information that you need at the time that you need it, and that allowed you and others to share your knowledge and expertise. Because knowledge is power and when a practitioner goes into a meeting, they are a part of a system of knowledge, training and support. And to continue the metaphor, when they are in that meeting they aren’t really there singing as an individual they are there as part of a choir. Regardless whether or not they are particularly good at what they do their voice is strengthened and protected by the voices of the people around them.
It will take time to build and grow but the strategy is simple – we gather each other’s voices and stop singing on our own.