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.
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.
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.