Outraged for a day?

This blog is inspired by @justicefornico’s blog although the words and mistakes are mine, all mine…

Following the release of Sir Stephen Bubb’s working group’s report this week, there has been much debate yet again in the learning disability field and social/health care more widely in the UK. The focus has been on people in so-called Assessment and Treatment Units, but as always the debate has been much wider. These issues made the news on Wednesday, but where are we now? Personally, I think we are lost. This is a very personal blog – not my usual style. And I am just sharing some thoughts from this week and my real sense of dread that we’re on the road to nowhere.

Personal agendas

Friday seems like a good time for confessions. So, I was one of only three people I think individually named in the Bubb report. Surely, by rights, I should have been on BBC TV spouting forth about my views and the importance of the proposed Positive Behavioural Support Academy. I wasn’t. How did this make you feel Richard? Well, I was a little jealous of course. We probably all enjoy the idea of five minutes of fame. I was also a little cross because a practical proposal, built on clear theory and evidence, failed to be interesting enough. A PBS Academy is not sensational enough perhaps. Being critical of the Bubb report seemed to be the order of the day. Comments about the Academy idea could be heard, and they focused on how one model cannot be the answer.

Because I’ve not made the headlines, I can also be smug about remaining independent of the bickering and maybe appear wise and balanced by focusing on the fact that we need some action with and for people with LD and their families rather than more Reports. As I’ve tweeted already, the Bubb report (to be fair) is only another report. It is not action. What happens now is what is important.

The release of Bubb’s report has been an opportunity again for everyone in the LD field to offer a response about their particular take on the issues and to press their agenda. I would have taken this opportunity if it had been offered. We are all human and not perfect.

The confessional question is which person were you? Being critical rather than constructive? Making statements to get you noticed? Taking the opportunity to make your point – riding on the back of tragedy? Staying aloof and appearing superior? All of these? I’ve given you some idea of many of those that I was/am this week. And I’m writing a blog now that I hope people will read! What’s that about?

For those of you affronted by my comments for whatever reason, I’m sorry. But I can justify my position just as well as the next person. I’m offering these views for the good of people with LD and their families, and you can’t beat that for a motivation. I have the get-out that however misguided I am, at least I have the right motivation. Probably, everyone else will say that too about their motivation. Great, we're all winners then.

In the end, as appropriate for a confession, I feel guilty as well as jealous and angry. Nice to have the luxury for some self-analysis, and here’s some more justification/rationale. My self-analysis means nothing without some action. Hence this blog, derisory as it is.

What is good about the Bubb report?

Of course Bubb’s report is not perfect, and there are problems with the process etc etc. It would be good to share though what is good about it. Here’s what I like:

•  A clear recognition that there is a problem and that this is a complex issue – there is no single answer no matter what anyone says
•  Recognition that people in the system generally mean well, but this isn’t actually enough
• A shift of power is needed towards people with a learning disability and their families
• We need some leadership, but also large scale intervention to shift the system – things won’t happen on their own
• A solution is needed with multiple components, addressing many contributing factors at the same time, and that will have long term impact

Perhaps it does matter that these points have been made before, but shouldn't we also say what is good about the Report?

I imagine that working to develop the report has been a nightmare. Government and its bodies don’t like centralised intervention, and the LD community spent a great deal of time being critical of the idea of the working group and yet another report right from the get-go. Between a rock and a hard place.

The other thing that I think is good about the report is that it created an opportunity to push for action – Yes, through the media, but also with NHS England and government(s) in the UK. There is a small window for this. Soon, campaigning for the general election will take over. Learning disability issues are unlikely to be heard during that time. Then we’ll have the same or a new government settling in, so little will get done. Very soon, it will be a year later and we can all get back on the Winterbourne bandwagon by saying that nothing has changed one year on from Bubb. I can just see the media and social media headlines in November 2015 already. In fact, I might start writing my piece now. I have 12 months to craft it, so it might actually be good.

We had a window. The window is already closing. There are so many disparate voices on the issues, and these are spoken in the room behind the window. No-one is noticing that the window is being closed and soon those voices won’t be able to be heard outside of the cosy learning disability debating lounge.

Too late? Lost?

Perhaps it is too late already. Will the learning disability community actually come together with one voice? Compromises will be needed. People who do not like each other, or each other’s views, need to work together. If someone tries to lead, others tend to question their right to do so. I don’t know the answer but my suggestion is that we do need a consensus and strong action and that the time is now. If anyone says “we’re already doing this”, I would ask “are you really”? Where is the single movement and voice that we can all get behind to make a difference? This is needed to deal with the legacy of Winterbourne and it will be needed again and again in the coming years. 

It is easy for organisations, individuals, society, the media, and government to be outraged for a day. That was Wednesday. What frightens me is that we might let society in general off the hook – they’ve “done” this problem by being outraged for a day. There are also signs of little confidence that outrage in the LD field will lead to action. For example, there have been continued applications to establish new ATU-style facilities. Someone thinks we won’t manage to change things and that there will still be an opportunity to make money into the future…

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

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]Warwick.ac.uk] 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!