Who’s got the power?

Other people have dissected the Bubb report (Winterbourne View – Time to Change) in some detail today.  I’d recommend in particular the posts by Chris Hatton, Rob Grieg and Alex Fox for some reflections and thoughts on the future.  It’s also been heartening to see the priority accorded it by the television news channels, and congratulations to Kaliya Franklin and Gary Bourlet for ensuring coverage did not all gravitate towards policy wonks, charities and providers.

I want to offer two brief reflections:

First, after a shaky start both Stephen Bubb and his group and NHS England have I believe done a great deal to involve, engage and listen to people with learning disabilities, and key parts of today’s report are testimony to that.  CHANGE (where I am a trustee) are working hard to translate good words into action, in particular relating to the employment of people with learning disabilities in the NHS.  With NHS Employers CHANGE are working on a plan to be presented to the second ‘summit’ meeting with Norman Lamb, Simon Stevens and other senior bods in January.   We see employment as critical not just as an outcome in its own right, but as a way to transform institutions and their practices and are interested in particular in how employing people with learning disabilities in areas such as health promotion and commissioning could improve NHS performance.

Sadly, it does not always seem that the principle of involvement (nothing about us without us) guides the action and activities if others with a voice in this debate.   This is problematic on a number of fronts and now is I think time for some reflection on the part of all actors as to whether they practice what they preach.  As I pointed out in this blogpost, self-advocates have clearly defined community living not only as ‘being’ in the community, but as about choice, control and participation in the community.  It is therefore quite feasible to lend strong support to people not being confined to institutions yet still, through ones approach, to objectify people and deny them their right to voice and choice.  Surely for any organisation to enjoy credibility it has to model that which it claims to pursue in the world?   Fundamentally this is about consistently attending to questions of power – organisations that want a place in shaping the future need to be accountable to, in service to or led by people with learning disabilities and their chosen advocates.  Otherwise they themselves are part of the problem.

My second reflection also concerns power – the power that Ministers and central government either have or claim to have given away.  During various meetings I’ve attended at which Department for Health Ministers or senior NHS Officials, including Simon Stevens have been present what has been apparent is the degree to which accountability has been distributed across the NHS and beyond, to a point where no-one seems ultimately accountable, and no-one seems ultimately to be in charge. While not advocating that a dropped hospital bedpan should reverberate in Whitehall, what is obvious is that this fragmentation and devolution to the local does not in fact empower those with the least voice and that it is not improving outcomes for people with a learning disability.  If Ministers and senior officials have given power away, where has it all gone?

I’m slightly skeptical about this claim to powerlessness.  I certainly hope an outbreak of Ebola in the UK will not be met with the same claim to impotence.  However for now it seems the people with the supposed power are impotent, so why are we spending so much time on them?

So thinking about power, a charter of rights, plus a new ‘right to challenge’ are potentially welcome, but not if individuals and families are still left to battle alone or if it merely becomes a charter for lawyers.  We need to think about how to genuinely put power in the hands of individuals, families and their chosen advocates not simply to challenge decisions after the event on a case by case basis, but to genuinely affect the institutional change required at all levels of the NHS, local government and beyond.

This suggests to me a much deeper mode of involvement and accountability than anything so far seen – something we might look to in the promised white/green paper but which we need to come up with proposals around now. The work CHANGE are doing on employment is one important vehicle.  Another is Chris Hatton’s proposed ‘ninja taskforce’ hit squads – which would I hope themselves be a model of involvement, and which if properly empowered offer the chance of securing real change. Both are about involvement in problem solving, not simply listening exercises to tick a box.  It suggests also that we genuinely embrace and get over the problems with integrated personal budgets and do this within a framework of supported decision making to pass real power to individuals and their families.

It suggests that if those in charge have given power away, then the task and opportunity is to seek to grab it with both hands.

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