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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