As an 18 year old learning disability nurse doing my training in a special hospital, I did my share of tea rounds for our patients. I was part of a system that imposed a take-it-or-leave-it lifestyle.
“Milk, two sugars.” Everyone likes tea, of course – with milk and sugar.
Looking back 38 years later I know I wasn’t comfortable with it and I think I recall getting short shrift from my first charge nurse when I suggested not putting sugar in the tea.
Tea with the obligatory milk and sugar was just one of a thousand small indignities that added up to a single word: Institutionalisation.
We (and I) have come a long way since then. Most support is unrecognisably better than it was when I trained.
The balance between institutionalisation and personalisation
In helping close 4 long-stay hospitals I have helped drive a collective ambition into my organisation that nobody must ever again be subjected to such unacceptable de-humanising support.
Personalisation, person-centred thinking, active support, positive behaviour support – these principles are now key components of our training for the people who work for Dimensions. I am determined we do everything we can to ensure anyone who starts a career with us knows to treat a person as the individual they are.
But I am beginning to question whether that absolute commitment to provide choice – our zero tolerance of anything that looks anything like institutional practice – has brought with it an unintended and potentially harmful consequence?
In this blog I will share why I think that we are close to that edge, perhaps sometimes stepping over it.
In writing this I hope to encourage a much needed debate. A debate where criticism and accusation aren’t the first reaction. Why? Because learning and improving how organisations like Dimensions provide support can only come from honest reflection and debate.
Should we let people make potentially harmful choices?
A colleague of mine recounts how, when she was working for a different organisation, she would on occasion visit a young man (I’ll call him George) who loved his Batman outfit. He liked it so much that he chose to wear it every day, at home and around town.
My colleague realised George was increasingly reluctant to leave his front door. She realised he was wanting to avoid the ridicule he was sadly getting from strangers in the street. Everyone was very clear George was capable of making decisions for himself.
Therefore his support staff had concluded they had no option other than to support George to wear his favoured outfit. After all, their role was to support him to choose.
Before sharing some thoughts on this, let me offer another example based on someone else who likes to make choices – me.
If I were to choose to eat chips with every meal and watch sport every night it wouldn’t take long for my wife to sort me out. She would not accept that just because I could choose to become morbidly obese that I would be allowed to make those choices.
She’d wonder why, and she’d find out why I wanted a chip-eating, sofa-dwelling lifestyle. She’d know to question if I’d become depressed. Or if I was showing unhappiness about something else in life. Maybe I’d lost sight of the benefits of being able to get out and about. She would challenge me, nag me, persuade me. Ultimately – and in no uncertain terms – she would say “No! You are not having chips again.”
But that’s my wife – she’s my next of kin, she loves me and she can say “No.” And so can the families of people we support when they go home. However, when support is provided by Dimensions and other organisations like us, the situation is different.
Duty of care versus mental capacity
We work within a legal and regulatory environment; neither my wife nor the families of people we support are professionals tasked with providing support within that world. So we need to ensure our staff can provide great support and know what to do when someone they are supporting wants to keep on making potentially harmful decisions.
Let’s return to George.
He was clearly better supported; when it was explained to him that the ridicule he was suffering from was a consequence of his decision to wear his Batman costume. When he was helped to reframe his choice away from ‘what do I want to wear’ towards ‘what can I do today so that I can go out and not be taunted?’ When staff persuaded him to wear a different outfit because his batman outfit was ‘still in the wash.’
Yet, even whilst this approach to support leads to a much better outcome, it exposes a fine – and in my eyes dangerous – line between helping someone understand life and make a decision for themselves, and manipulating the truth and misleading someone so they do the ‘right thing.’
The latter, even with good intentions, is not the answer. It is just a short step away from the sort of institutional practices I worry about.
So, I’ve reflected on my colleague’s story about George and on the many social media posts on both sides of this debate. It’s clear to me that enabling people to have real meaningful choice without imposing your preferences isn’t easy. It becomes even harder when they are choosing something that is potentially harmful.
What is harmful? And who determines that? In my case would it be my wife on the 3rd consecutive day when I’ve eaten chips? The 7th? When I’ve become so obese that none of my clothes fit? Or would it be the doctor when I arrive in A&E?
What’s important to the person, but also for them?
It has become a gospel truth – and goodness knows how often I’ve stood in front of staff making this point – that our role is to support people to have choice and take control over their lives. In being so clear and strident I am managing my fear that any dilution of that message risks a slide back to institutional practices.
But George’s story illustrates very well the danger of blindly imposing a mantra without making equally clear how you can help someone have a great life even when they are prone to make harmful choices.
The law is absolutely clear. If a person has mental capacity they can make bad choices and woe betide any professional who tries to restrict that choice.
However, supporting someone with capacity to have choice does not mean (as John O’Brien once described it) that they can choose to stay in bed all day and not wash.
If someone with capacity is prone to making choices which have the potential to cause them or others harm, then our duty of care applies. We must determine not just what’s important to the person, but also what’s important for the person.
We use this concept to inform our risk assessments and by bringing these to best interests meetings we can work with the person, their family and other professionals to manage and potentially prevent harmful choices from being made.
Do we risk becoming so focused on not getting things wrong that we lose sight of getting things right?
I hope I’ve illustrated that this is not simple stuff. It takes time to get it right. It requires listening to different perspectives and involving various people in working out what’s best.
One fear I do have, which is not going away, is how well providers are helping their support workers understand this complex challenge. In our heavily regulated contractual world where so many people make judgements on what we do and how well we do it, it is easy to become worried about being criticised.
Do we risk becoming so focused on not getting things wrong that we lose sight of getting things right?
Basically good support – as CQC’s Andrea Sutcliffe might say – is about supporting people as you would want your mum supported – or how indeed you yourself would want to be supported.
As a social care leader I am clearer than ever that we must help each and every one of our colleagues to think and feel comfortable with complexity and ambiguity.
Why not join the discussion? Share your thoughts at online@dimensions-uk.org