Wednesday, 16 July 2014

The "top provider" scandal

Yesterday we learnt that NHS England has appointed Stephen Bubb (Chief Executive of charity leaders network ACEVO) “to head a new group of experts and advisors to develop a national guide for how we provide health and care for those with learning disabilities”. The announcement can be seen here:

Stephen has himself blogged about this development here:

Within his blog Stephen proudly announces the following:

“I gathered together my top provider members in learning disability for a breakfast to discuss our options. They were enthusiastic for the task; people like Jan Tregelles of Mencap, Steve James of Avenues Group, Robert Longley-Cook of HFT, Mark Lever of NAS, the indomitable Su Sayer of United Response and Ben Rick of the Social Investment Business”

This statement rendered me speechless, distressed, overwhelmed, hopeless and completely betrayed. I am devastated, despairing and feel completely powerless and disregarded like so many family carers of people with Learning Disabilities.

My brother died an undignified and premature death in 2012. My brother’s care provider was United Response. The CEO of United Response is “the indomitable Su Sayer” that Stephen gushes about in his blog.

Just over a week ago Bill Mumford resigned from the Winterbourne Joint Improvement Board (which is the group tasked with finding new placements for people with Learning Disabilities inappropriately placed in assessment and treatment units). Bill’s resignation followed 2 safeguarding allegations within MacIntyre, the service provider for which Bill is CEO. I was hugely disappointed by the prospect of further delays in ‘transforming care’ but I was impressed that Bill appeared to be prioritising the need to get his own house in order. Bill seemed to recognise that it may be hard for him to influence positive change nationally when his own organisation is under investigation.

My brother died at the age of 33 with United Response as his care provider. The serious case review, complaints procedures and independent investigations and inquest are ongoing and the CQC are aware of the circumstances.

I stayed silent and cried in the shadows when United Response posted gushing tweets about how on earth Connor Sparrowhawk could die in an NHS treatment unit. I silently wondered how they could dare to ask this when my brother died with them as his "care" provider.

I stayed silent and cried in the shadows when United Response posted gushing tweets about their 2014 charity award.

I can't stay silent and cry in the shadows anymore.

United Response aren't the only agency being investigated in relation to my brother's death. But they are the only agency whose CEO is accepting an invitation to serve as an "expert". My family has begged for candour from United Response and the other involved agencies following the death of my brother and it hasn't been forthcoming.

Something needs to radically change and services need to be held accountable for their actions.

All I have ever wanted since my brother died is meaningful collaboration between health and social care professionals, care providers and families. I want to see real, joined up, collaborative learning and meaningful change via genuine partnerships. This would be invaluable to grieving or despairing families; but all too often an “expert trap” prevails leaving families stuck in the shadows without a voice and people with Learning Disabilities dying or abused in the gutter.

Stephen Bubb's decision to proceed via a cosy breakfast with seemingly inequitably selected “top providers” leaves me with some questions:

  • How is United Response currently considered a “top provider”?! (They certainty wouldn’t get my brother’s vote).
  • How is Su Sayer’s involvement with Stephen Bubb’s team of “top provider members” any different to Bill Mumford’s involvement with the Joint Improvement Board?
  • If our “top providers” are those who are currently involved in safeguarding investigations into a premature death, what hope is there for vulnerable people with Learning Disabilities in this country?
  • Does anyone actually care enough to aim a little higher?!
  • Are scandals, deaths and allegations centrally documented so that we can be confident that the “experts” wheeled out to represent the needs of people with Learning Disabilities are transparent about any skeletons in their own closets?
  • Should national change be driven by individuals from organisations who are motivated to win contracts for the "care" provision they are tasked with transforming?
  • Why weren’t service users and families consulted as part of Stephen Bubb’s game plan?! 
  • Does my brother’s death mean anything to anybody?

Sometimes I feel so desperately alone in all of this yet I have read some eloquent blogs following Stephen Bubb's announcements which raise some deeply important issues:

 These blogs help me realise I am not on my own. Thankyou   @sarasiobhan,  @chrishattoncedr and @MarkNeary1

I wonder if it’s time for the Joint Improvement Board, NHS England, the Department of Health, Norman Lamb and "care" providers to start listening to those of us who are experts by experience (the worst possible experience) instead of chasing each other’s tails and maintaining the status quo.