Challenging behaviour and learning disability in the UK – the three options

We heard again this week about care staff working with people with a learning disability engaging in abusive practices. Thus, it seems that the scandal of Winterbourne View rumbles on. There have been other scandals and stories too – people dying in services, children and adults in placements a long way from home.

Of course, I share the anger and the disappointment associated with each of the stories that emerge. What makes me more cross though in many ways is the overall lack of leadership and vision ensuring some action. Words are important, but not sufficient. 

Here are some more words though.

My focus in this blog is the options for action. There are three. Choose one, and get behind it.

554 voices

I am going to start with the views, experiences, and stories of people with a learning disability (LD) and challenging behaviour and their families and carers. This was the focus of my 554 Voices blog a few months ago.

My colleague Dr Gemma Griffith carried out some very high quality research focused on a synthesis of research in which people with LD or their families/carers were interviewed about their experiences of “challenging behaviour” and of services. Individual stories that we have seen in the media are all unique of course, but there is some additional power I think in Gemma’s work to try to pull out some themes across what 554 people have said.

People with LD talked about: an imbalance of power (where things are done to them, and they have little real choice), how their environments (both physical, and social – what other people do and say) cause their challenging behaviour, the indignity and pain of physical interventions, and also a real respect for staff who took the time to get to know them and provide personalised support.

Families and carers talked about: their deep love for their relative that drove all their (family/carer person) frustration with the system and willingness to battle to get things right; how the lack of suitable services cost them in terms of their own identity and sometimes resorting to crisis management approaches when they do not want to; their relationships with services (clearly Us vs. Them) and the fact that what services can offer by way of support falls short of the needs that families and people with LD and challenging behaviour have; and their significant concerns about what will happen to their relative in the future. On that last point, given all of the care scandals, I can’t imagine how distressing this issue of the future must now be for families in the UK.

The problems are all described quite clearly

What people with LD and families/carers tell us is clear. Although I don’t mean this to be an exhaustive list, there are also a number of pretty clearly agreed issues/problems that need to be addressed:

• Values are the starting point. For example: rights, personalisation, respect, dignity, and a focus on the quality of life of people with LD and challenging behaviour, rather than simply removing the behaviour
• People with LD and families/carers need to be at the heart of any response – this is about their lives, not about a medical disorder that needs treating
• Related to the last point, we need a shift away from a medical model of challenging behaviour to a social one
• Challenging behaviour has multiple “causes” (please forgive the short-hand here), and so supports and services need to cover a range of factors (from physical and mental health, to environments, inclusion, and finally specialised evidence-based supports/intervention) – see my blog on the importance of “theory”
• Services and supports are needed to make sure that people with LD can live where they would like to live, and that this should be in their local community
• Services and supports are needed to make sure that people with LD and challenging behaviour can stay living with their families, where this is what everyone wants
• Related to the last two points, local expert capacity is crucial 
•  Service providers are needed who know what they are doing, are locally based, and deliver evidence-based supports
• Competent staff are needed in every setting in which people with challenging behaviour live their lives (in their own home, in schools, healthcare, social care, leisure settings etc etc.)
• Staff need to be better valued, paid better, and given the support (e.g., emotional, training) that they need to deliver high quality support
• Those who commission services need to be able to work the system to deliver what is needed
• Commissioners also need to understand what to commission, and to only commission high quality supports and services
•  Leadership is needed at all levels (leaders with LD, family/carer leaders, providers, commissioners, local community, politicians)
• Positive Behavioural Support as a model is central to many of the preceding points
• There is already good practice related to many of the above points. However, they are in essence examples of good practice. The system has failed to disseminate and implement these individual pieces in a coherent way
• Last, but by no means least, challenging behaviour is a life-span issue. Coherence in support across life is needed. This means starting with early support and intervention, but also being there if/when things go off the rails later on. It means not having to battle step-by-step, and not creating artificial barriers such as transitions and boundaries to services (who pays for what, who is responsible for what)

I have been in several meetings and discussions, read blogs and other opinion, and read letters from important people to other important people over the past few years where one or several of the above points are made. Sometimes, focusing on one of them is proposed as the solution. If you look at the list, and think about the Mansell reports published twice by government over the last 30 years, a single point solution is not going to work. All of the factors need to be pulled together into one massive action. Forget nudging the system, we need a massive shove to make something happen.

One of the simplest actions being proposed is to move everybody out of Assessment and Treatment Units. Without all of the points listed above (and probably others too) being directly addressed, this is doomed to failure. This so-called strategy is already failing, and letting that one single issue drive the whole response will distort everything. Undoubtedly, it is wrong to lock people up away from home with little “therapeutic” input whilst spending (wasting) massive amounts of public money. The solution to the problem needs to be one that is multi-component and multi-level. This solution will stand a chance of making sure that people can be moved out of ATUs. The same solution needs to ensure a better future through whole-system change.

The three options

People in power have three options.

Option 1 – write reports that re-state some or all of the points I list in the preceding section of the blog. None of these points will be new. I’ve half done your job for you here by providing a reasonably comprehensive list. We have known about them all for years – so these are not my ideas at all. By all means write another report though.

Option 2 – get behind an idea that has started to attempt to link together most of the issues in the agreed list. We called this the PBS Academy for England. I think we probably made some errors with this proposal (of course!). First, this is not about England only. Internal UK borders do not stop inappropriate placements of people with challenging behaviour out-of-country. Imagine the scandal if we sent people with LD to placements in France! We’re happy to send Welsh people to England though… Second, is the choice of the word Academy. This sounds too academic perhaps. Calling it an Institute, Centre, or Project would work just as well – let’s not argue about that. Third, we focused on Positive Behavioural Support (PBS). This is indeed the core to the plan, it is where the evidence base is, and it connects with just about all of the points listed as issues above. However, it is not just about PBS. Perhaps calling this the “Challenging Behaviour” Academy/Institute/Centre/Project/Plan would be better and more accurate. Perhaps we didn’t think big enough in that respect either. Finally, we assumed that people would actually read the ideas in the paper instead of reacting to what we called the idea. Doh!

The whole point of Option 2 is that it is a real attempt to pull together multiple strands and show how one large, single, co-ordinated action could work. Of course, the detail needs developing and also multiple stakeholders need to be involved in that process. However, it is a coherent plan for action based on an underlying analysis of the problems.

Option 3 – Come up with an alternative comprehensive, coherent plan for action based on an analysis of the problems facing the UK in supporting people with LD and challenging behaviour and their families and carers. I would very much welcome someone doing this. As yet I have seen no alternative proposal or idea on the table. I would personally, gladly, support any alternative better idea.

I do think that there are genuinely three options. The first chance to make this choice is for Sir Stephen Bubb and colleagues in their report to NHS England by the end of October. Which will it be? 

One, two, or three?

The end