Saturday, 11 October 2014

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

Tuesday, 16 September 2014

Some additional context for the proposed PBS Academy for England

The content of this blog is mine and not the responsibility of any of the other contributors to the proposal for a Positive Behaviour Support (PBS) Academy (see here if you have not yet read the proposal).

There has been a lot of interest in our publicly posted proposal/suggestion for a PBS Academy for England. Some interesting questions, including several relating to issues we touched on in our short paper. However, it is clear that for some readers the proposal is not yet linked with other aspects of context that would be helpful. Specifically, some have asked what PBS is or have wondered what the Academy authors mean by PBS. Others have asked what the roles of various professional groups might be. Finally, many people have been in contact to say that they have been working locally on projects and ideas that chime with much of what is said in the Academy proposal. 

This final class of responses reinforces our point that much of the Academy’s role would be to connect existing excellence and resources within the framework of carefully defined quality and competencies. That is, we’re not simply proposing a co-ordinating role. Instead, we believe that clear standards and competencies need to be established and that then local/regional work that meets these criteria, or aspires to, would be facilitated in communities of practice across England. The Academy would encourage/support all excellent practice. It would also have high standards – people with learning disability and their families deserve nothing less. My personal view is that this means some people/groups currently professing to be PBS experts or PBS competent may not meet the Academy’s standards. Basically, there has to be a line… The proposed Academy will need to be a mark of quality that various stakeholders can trust. Not an easy job, but it needs doing.

What is PBS?

In trying to influence the debate, some of the UK’s leaders in PBS put together a series of articles in BILD’s International Journal of Positive Behaviour Support in December 2013. One of these papers focused on the defining features of PBS. It did not really say anything new, but it was intended as a clear description of what PBS is about. Many organisations around England received a copy of the special issue of the journal, and so you may have access already to all of the articles. The link to the special issue is here. If you cannot access the journal, but would like to read the paper on what PBS is, you can email me (R.Hastings[at]] or any of the other authors.

Our PBS Academy proposal needs to be read in that context of how we see PBS. We did not re-state definitions in our proposal and perhaps we should have done. We have, though, already been clear about a definition of PBS for the UK. One point is that unless you are delivering (have competencies in) all dimensions of the PBS defining features, you ain’t “doing PBS”. The defining features contribute to an integrated framework – it is not possible to pick and choose to say (for example) that 7 out of 10 will be good enough.

The roles of various LD professions

I hope that we already were clear enough in the proposal that working alongside people with LD and their families/carers would be a founding aspect of the PBS Academy. Granted, there are again few details about how that would be achieved and such detail would have to be developed early on. At this stage, we had some family/carer input to the proposal but none from people with LD.

Interestingly though, various professional groups in the LD community in England have wondered about their role in a PBS Academy. My answer is actually to take one step backwards to a broad framework (sometimes, I’ve grandly called this “theory”) or model that links together the evidence relating to challenging behaviour. I’ve blogged about this before, arguing why it is important for people to care about “theory” in generating high quality services to support people with behaviour that challenges. Check out my What Use is Theory blog.

It is clear from a working model of challenging behaviour that PBS plays a central role because it is built upon much of the existing evidence about the inter-personal and broader environmental contexts in which challenging behaviours emerge. However, it is not the full story by any means. For example, there is good evidence that physical pain, co-existing mental health or developmental disabilities (e.g., autism), and various genetic syndromes are associated with increased chances of people engaging in behaviours that challenge. These associations mean that a comprehensive service supporting people with challenging behaviours will need strong medical assessment and management of health issues that may be causing or exacerbating challenging behaviour. I personally would not want to see PBS kicking in until such health causes can be ruled out.

We also argued that a lack of communication skills is associated with more challenging behaviour. Speech and Language Therapists would clearly have a role in helping to develop these skills. A further example is the association between challenging behaviour and a lack of meaningful activity in people’s lives. My understanding would be that Occupational Therapists would have competencies relevant to this issue. Psychologists would hopefully have skills to deliver non-pharmacological “treatment” of underlying mental health problems (e.g., through various evidence-based psychological therapies) associated with challenging behaviour. Learning Disability Nurses will also have competencies in many of these areas I’ve used as examples.

My point is that a multi-disciplinary group of people is needed, working to a shared model of challenging behaviour, to be able to deliver excellent services. This is not the same thing at all as saying that everyone needs to be “doing PBS”. Not everyone can develop the depth of competence in PBS to lead on that aspect of the challenging behaviour model. Specialists (from whatever professional background) are needed in PBS roles. Those PBS practitioners need to be a core part (probably the largest part) of all multidisciplinary challenging behaviour teams.

Another important point to make is that the Academy proposal is not just about supporting adults. We were clear that challenging behaviour has its roots often earlier in life, and so significant work is needed with a focus on children. Explicitly, early intervention services are also needed that are informed by the same basic model of challenging behaviour.

Back to the PBS Academy proposal

So, please read the Academy proposal alongside those two other aspects of context – what PBS is, and also how PBS fits into a wider model of challenging behaviour. I hope that the whole package, with the PBS Academy proposal at the centre, offers a way for all stakeholders in the learning disability community to come together and to make something significant happen!

Thursday, 28 August 2014

Do we need a Positive Behaviour Support Academy for England?

A short post, and in the spirit of making a new proposal as widely available as possible to the intellectual disability community in the UK (and England specifically).

I’m not claiming this as my idea at all, but there is a nice synergy with my recent discussion piece about the idea of Improving Access to Positive Behaviour Support if you want to take a look at that too.

It is also important to say that the proposal document has been put together quickly by a volunteer group and it does not represent the views of a particular organisation. All we are trying to do is to get the idea out there along with some thoughts we had that flesh out the idea to a reasonable level of detail. If the idea is taken up (commissioned?) by someone with power and access to funding, I think the idea of a PBS academy should belong to the ID/LD community in England and not be seen as a proposal from someone or some group in particular. Someone else might well lead the next stages of development of the Academy if it takes off.

Fingers crossed that something will happen!

There is plenty of detail that could be added to this PBS Academy proposal, and I hope that there is the chance for it to be shaped by feedback over time (because that’ll mean it might happen!) and for consultation with all stakeholders. The proposal is shared in its imperfect state in the hope it is useful and helps to provide a focus for a PART of the solution to the Winterbourne View nightmare.

In the interests of transparency, the main authors of the paper were myself and Prof David Allen but mostly because we agreed to take on that practical role. Direct feedback and ideas for the current version of the paper were also contributed by Peter Kinsey (CMG), Viv Cooper, (CbF), Prof Peter McGill (Tizard Centre), and Bob Tindall (United Response). Many other people also contributed directly or indirectly through conversations over the past few months, but they are too numerous to mention. I hope that this clarifies that the paper is an idea articulated by a number of dedicated people, but it isn’t owned by them.