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.


  1. I wonder how much is to do with the model of monitoring & evaluation currently used. The factors we value most about caring relationships in ordinary life are too difficult to measure and quantify. I studied the effect of Ofsted on schools when that system of inspection was first implemented. People were pressured to concentrate purely on the inspectors' checklist, because many of the good caring things they did were not assessed or valued. In some cases they were even criticised.
    Instead of focusing on the pupils' needs, they were forced to focus on the system's needs. Good teachers especially were disheartened by this. Schools also commonly resorted to finding ways to cheat or fool the assessors.
    Anyway, something to think about??

  2. I think that's probably very relevant. If professionals are feeling overwhelmed, inadequate, criticised, powerless and afraid of litigation it is paralysing. On top of this, professionals are flooded with targets and measured via standards that feel very removed from the relational work they are doing. It's no wonder that, over time, well-meaning professionals get worn down (and disheartened like you say).

    I suspect that relating and connecting is the solution. Managers / evaluators connecting with professionals so that professionals, in turn, feel able to connect with families. Blaming professionals is probably as unhelpful as blaming families. Systems and cultures need to change so both parties can work together.

  3. The other thing about workplaces and organisations is that uncaring, self-seeking & idle staff are very effective at sniffing out places where they will be able to get away with things. They gravitate towards these workplaces, so that by weight of numbers their influence prevails. I would imagine somewhere like a small care home or assessment unit must be particularly vulnerable to this. A place where clients cannot speak for themselves is very attractive to these staff. From my recent experience as a patient's relative in a large hugely disorganized London hospital on a nightmare site, I would say that too is a fertile environment for dodgy practice.
    Thus much depends on leaders & management making clear, in practical day-to-day ways, right from the start that you cannot get away with things here!
    But this can be an uphill struggle which requires ongoing determination and vigilance. You will be obstructed every inch of the way until the balance tips and you have a majority of staff supporting you. There are good people, but they are often intimidated by the bullies and management have to enable them to have a stronger voice.

  4. Your observations ring true to me as both a family carer of a person with challenging behaviour and a professional working with other peoples relatives with challenging behaviour. In my experience its very easy to disenfranchise the family and keep decision making in-house; although it almost always leads to poor outcomes for individuals using a service.

  5. Students with learning differences who receive academic support in high school are going to need it in college. That support varies from student to student, just as students' disabilities vary. Each student presents a unique set of challenges. See more writing a book report

  6. I think all our problems in adult lives go from the childhood, it is parents who are in charge for our future! that's a great responsibility!

  7. Maybe families are desperately trying to communicate with professionals after years of feeling unheard and ignored.

  8. This is a very difficult question and not every family can cope with such a tragedy without the help of a specialist.