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.

Wednesday, 7 May 2014

The Stinking, Sinking Ship of "Learning Lessons" in Serious Case Reviews

The phrase "lessons learnt" has come to represent everything that I think is wrong with responses to serious incidents in Health and Social Care. Whenever I hear this phrase, an internal rage rises and I become desperate for a change in the culture of responding to serious incidents in which patients are harmed.
When my brother died suddenly and needlessly I vividly recall saying to my family:
"We're going to do everything humanly possible to stop this happening to anyone else with Learning Disabilities...I don't want his life to have been wasted for nothing...I want him to be the last".
How naive I was. How exhausting this journey has become.
I've since realised that 1200 people with Learning Disabilities die every year in England alone with symptoms amenable to treatment. So my brilliant brother wasn't the first and certainly won't be the last...I'm honestly left feeling that he's just another body on a pile that everyone can see but nobody cares quite enough to do anything about.
The evidence is staring us in the face yet we're clearly not "learning lessons".
The “Learning Lessons” ship has sailed
Surely it's time to admit that the "learning lessons" ship has sailed? In fact the "learning lessons" ship has sunk and everyone on it has drowned. Senior people from involved organisations attend numerous meetings and compile reports whist nothing changes. My family is clinging desperately to a life raft that the involved agencies seem more intent to sink every time we dare to ask a question.
"Learning lessons" stinks of slow paced inactivity. Serious incidents are investigated behind closed doors and families are left with no support, held at arm's length waiting desperately for something constructive to come from their nightmare. Months then years pass and nothing is disseminated, nothing changes and more people die whilst we await the Holy Grail list of "lessons learnt". The Serious Case Review overview report is professed to be the key that will unlock the necessary changes...except it won't! We only have to look at the disappointing response to the Winterbourne Serious Case Review to predict that my brother's report will likely lead to a lot of talk and very little action.
Serious Case Reviews feel to me like an academic exercise of going-through-the-motions. Investigating because it's mandated, whilst each captain from the "learning lessons" ship desperately hopes that their organisation comes out smelling like roses. Terrified of litigation, fearful of media attention; capitalising on any relevant legislation, policy and protocol to maximise secrecy, delaying dissemination for as long as humanly possible.
If only this much time, effort and adherence to legislation, policy and protocol was embedded in practice, I can't help but feel my brother and many other people with Learning Disabilities would still be alive!
It strikes me that there is actually a hell of a lot to learn yet the obsession with "learning lessons" inadvertently maintains the status quo.
It took months following the death of Connor Sparrowhawk for the investigators to “learn” that vulnerable people with epilepsy shouldn’t be left alone in the bath. In my mind, this is an insult to Connor’s memory, to his family, to his friends and to the other vulnerable patients accessing services.
I wonder if Serious Case Reviews and investigations, as they stand, actually do more harm than good because it appears as though something is being done. Months pass and meanwhile the involved agencies provide the same 'care' to vulnerable people, poor practice continues, more people suffer, more people die and more families have their lives turned upside down.
A vision for a better future
Haven't we reached the point that the "lessons" are there and we actually need to get out there and do something differently? Isn't it time for radical change? Isn't it time to translate these goddamn 'lessons learnt" into significant, meaningful and tangible changes in practice?
When patients are seriously harmed we need to sit up fast and take action immediately. Immediate, honest analysis, immediate changes and wide dissemination so that improvements are implemented nationally, for the benefit of all. Immediate, immediate, immediate...not months and years of navel gazing with no action and more bodies on the pile!
We need swat teams, going into services fast to help them pull their socks up. To understand the problems, make the necessary changes and stop it happening again! Surely this would be better for patients, staff and families? Not a ‘blame’ culture but a ‘change’ culture.
The changes needed in responses to serious incidents aren't actually all that radical. But they do require a willingness to do something differently, which is possibly where it all falls down.
What will it take?
It seems clear to me that there needs to be a Serious Case Review into Serious Case Reviews. Let's analyse and identify what works well and where Serious Case Reviews fall short. Let’s put something else in place that is proportionate to the situations warranting investigation. Surely this would enable the development of a system that works, a system we can be proud of and a system that doesn’t stink of indifference and kick families in the face when they have already lost so much.
Losing my brother has been inexplicably horrendous. Yet our experience as a family since his death, through our interactions with the Serious Case Review panel and “the system” has added insult to injury. Well meaning professionals unquestioningly adhering to an inadequate system and unwittingly becoming part of the problem.
Is it too much to ask?
Is it too much to ask that NHS and Social Care services should act with integrity and be worthy of pride, even when the worst possible thing has happened? Despite the enormity of my loss, I do think this could be a reality...but we've got to want to change and we've got to be willing to invest some effort into making it happen. (And God forbid, we might just have to be willing to listen to families!)
Sticking our heads above the parapet
Maybe I’m a naive grieving sister who can’t see the wood for the trees...or perhaps I am an expert by experience (the worst possible experience) with something important to say.
What I have learnt is that there is a pervasive culture in health and social care that prefers families to be seen and not heard. However, the inspirational #107days campaign, created by volunteers and fuelled by another family’s nightmare, shows there are enough people out there who care about the health and rights of people with Learning Disabilities.
When will the people with power join us so that grieving families can confidently accept the invitation to “trust the system” instead of having to knock it into shape ourselves? 
NHS England, Department of Health, CQC, Politicians, Professionals...I'm looking at you and I'm unashamedly begging. What are you actually going to do and when are you going to do it?

Thursday, 27 March 2014

‘Difficult’ families or incapable environments? An endemic problem of family bashing

These words stood out for me when reading the Guardian article "Why did Conner Sparrowhawk die in a specialist NHS unit?":

“There is an endemic problem in the sector of family bashing, it’s ‘the family are difficult and a pain’. Parents are the experts on their son or daughter and we should tap into that expertise”.

Through my experiences working in Learning Disability services and the way my family has been treated since the death of my own brother, I know how easy it is for families to gain reputations for being ‘difficult and a pain’. Families are made to feel like ‘trouble-makers’ and their desire for involvement is too often seen by professionals as ‘challenging behaviour’.

What is ‘challenging behaviour’?
Our understanding of ‘challenging behaviour’ in people with Learning Disabilities is such that we see behaviour as ‘communication’. It is a means of relational interaction, often emerging in the absence of a voice. We recognise that behaviour that is challenging to services is often triggered by unhelpful interactions with the person or by an environment that doesn’t suit the person’s needs.

Assessments and interventions for ‘challenging behaviour’ in people with Learning Disabilities are based on endeavours to understand a person’s internal world, emotional experience and the function (or meaning) of their behaviour. This understanding then informs changes to interactions with the person and the development of a ‘capable environment’, that is able to respond to their needs. When the understanding is accurate and attuned and changes are proportionate, behaviour typically becomes less challenging.

Understanding families
Perhaps it would be helpful for those who perceive families as challenging to extend this same understanding towards them? Maybe families are desperately trying to communicate with professionals after years of feeling unheard and ignored.  Perhaps professionals and services are not offering families a ‘capable environment’ that adequately meets their needs as carers of people with Learning Disabilities?

Professional blind spots
When problems within services are acknowledged and owned by professionals, collaboration with families becomes possible. When families are dismissed as ‘trouble makers’, professionals become blind to their own impact on families, unwittingly triggering the very responses they find challenging.

Once a family is branded as ‘difficult and a pain’, everything they do is too easily attributed to this reputation. Everything they say is dismissed and their expertise rejected. The family’s internal world, emotional experience and the inadequacies within services subsequently remain unseen and the family’s communication can become more desperate.

Family Bashing
It is vital that professionals and services reflect on what it is about families that they find challenging. Is a family making unreasonable demands or are services simply failing to meet their needs as carers?

I am seen as ‘challenging’ because I want to see the reports written within the investigations into my brother’s death. My behaviour and communication with professionals is consistently compassionate, yet everything I say becomes further evidence that I am ‘challenging’ (and should not see the reports). Am I actually ‘difficult and a pain’? Or does brandishing me a ‘trouble-maker’ conveniently absolve responsibility to fulfil the ‘duty of candour’?

Too often professionals hold families at arm’s length. Families are dismissed and their distress is compounded. Can professionals not bear to connect with families’ internal worlds and emotional experiences? Or does blaming families protect services from acknowledging their own inadequacies?

A BBC article yesterday quoted Jeremy Hunt saying "a lack of honesty when things go wrong adds insult to injury and causes unnecessary pain and suffering". I couldn’t have said it better myself. If only Jeremy Hunt could see what is happening on the ground.

Monday, 24 March 2014

'Diffusion of responsibility' begets domino blame and history repeats itself

I've thought for a while that the outcomes of high profile investigations in health and social care can feel clich├ęd. "Communication" is invariably the predominant failing and we repeatedly "learn" that communication between agencies needs to improve. The terribly-bad-thing that happened actually might not happen again if we just learn this lesson...except we never do.

Over and over the same failings lead to the same horrendous outcomes and history repeats itself.

There will be an investigation into my brother's death and it will lead to a list of 'lessons learnt'. No doubt these will be a strikingly familiar list, regurgitated once again like in many cases before. Why are these 'lessons' so rarely translated into meaningful changes in practice?

People with Learning Disabilities are often supported by a wide number of people. Different professionals in different agencies in different premises. Diverse knowledge and skills are then available but does this lead to 'diffusion of responsibility', wherein everyone assumes someone else will take responsibility?

I don't think the stuff my brother needed was rocket science but it feels like nobody stepped up to the task or had the 'whole person' in mind. When it came to his physical health, perhaps everybody thought somebody else had it covered?!

The question on everybody's lips after a preventable death should be: "what could we have done?", "why didn't we do it?", "what got in our way?" and "what do we need in order to really change?". Instead the dialogue within investigations can be more akin to "it wasn't our job", "that other agency is to blame" and "someone else should have, would have, could have...".

They blame me, I blame you, you blame the others and a domino effect seems to emerge...diffusion of responsibility begets domino blame and history repeats itself. 

Unless we recognise and revise this habit, people with Learning Disabilities will continue to die young with preventable illnesses that are amenable to treatment. We have known this is happening for around 40 years yet the death toll rises; we are clearly not “learning lessons”.

How much longer should we stand by and let this happen before we make serious changes? When will we commit to really "learning" when things go wrong?! And with our complex health and social care system with multiple 'leaders', how do we overcome diffusion of responsibility and domino blame, which currently seem to jeopardise any attempts at real change?

I don’t have the answers but I hope that asking the question is a start.

This poem comes to mind:

That's Not My Job!

Once upon a time, there were four people...

Their names were Everybody, Somebody, Nobody and Anybody.

Whenever there was an important job to be done,
Everybody was sure that Somebody would do it.

Anybody could have done it, but Nobody did it.
When Nobody did it, Everybody got angry because...
it was Everybody's job!

Everybody thought that Somebody would do it,
but Nobody realised that Nobody would do it.

So, consequently, Everybody blamed Somebody... 
when Nobody did what Anybody could have done in the first place!
by anon