Tuesday, 19 May 2015

Positive Behavioural Support in the UK – the next steps

It has been six months since my last confession blog. I have had things to say, but mainly I’ve had my head down working with colleagues on several projects and getting some grants submitted! In the meantime, I have made many of the measures/questionnaires we developed for research and practice available for free download on this blog. Check them out on the left hand menu if you’re interested.

A PBS Coalition

On to this new blog. Having, like many, experienced significant frustration with the (lack of) clear action on the post-Winterbourne agenda, like-minded colleagues have been beavering away on some practical resources. This group built on the informal connections between PBS folks across the UK who produced a special issue of the International Journal of PBS at the end of 2013.

In the IJPBS special issue, we produced what were designed as two key building blocks to inform challenging behaviour services/supports and PBS in particular. We started by describing an underlying framework (or model/theory?) that we think is a useful summary of why challenging behaviours may occur, especially in those with more severe intellectual disability. This is explained in an earlier blog:

That framework paper makes it clear the breadth that is required from any interventions for challenging behaviour, and also shows why behavioural theory and intervention approaches need to be a part of PBS. With the theory stuff in mind, and drawing on international definitions of PBS, we also included a paper in the IJPBS special issue on defining PBS. This Gore et al. 10 point definition is now widely used in practice, and is informing resources that other people are producing. For example, BILD have a great new film explaining PBS for people with learning disability that incorporates this definition. You can take a look at the film here:


The reference to the definition paper is:

Gore, N. J., McGill, P., Toogood, S., Allen, D., Hughes, J. C., Baker, P., Hastings, R. P., Noone, S. J., & Denne, L. (2013). Definition and scope of Positive Behavioural Support. International Journal of Positive Behavioural Support, 3 (2), 14-23.

[for a copy of this paper, find my email address at Warwick Uni; Nick, Peter M, Dave Allen, Peter B at the Tizard Centre; Carl Hughes at Bangor]

A third paper in the IJPBS special issue was a conceptual paper describing how one might go about clarifying what competencies people need to be able to deliver high quality PBS. This was not possible without an underlying clear “model” of challenging behaviour, and clarity on the definition of PBS. We hadn’t developed a competence framework at this point, but we knew that one was needed. More on the PBS competence framework below.

The collection of people involved with the IJPBS special issue also reached out to other PBS people and to campaigning and service provider organisations and developed some proposals for a PBS “Academy” for England.

This idea has not gone away, but it didn’t quite catch the imagination (!) of civil servants and others involved in responding to Winterbourne. So, as yet there is no PBS Academy. However, some of the ideas in our outline proposal we felt were needed desperately. In particular, some guide to the human resource and competence for delivering high quality PBS was needed. Even though we thought we had defined PBS in a way that made clear what it is and what it is not, this was not settling the argument when individuals or services said “we’re doing PBS” when this declaration was in question.

A detailed document called the PBS competence (or competencies?) framework (see below) was then born. The informal group of people who had been working together to this point thought that a name was needed for the group. For better or worse, we chose PBS Coalition. There is nothing secretive about the group, but we don’t have a formal organisational structure, governance arrangements, or funding. Instead, for the time-being the group works together to develop much-needed resources and seeks to make these available free for anyone to use. In the longer term, we are still committed to exploring the idea of an organisation something like the proposed PBS Academy or at least that the core functions we proposed for an Academy are available somewhere at a high level of quality. We’ll see. Rather than keep arguing for an idea, we have been working away to produce useful stuff. We have engaged in action.

Positive Behavioural Support Competence Framework

This document has been launched today and you can download a copy for free by following this link:

Please note that the framework is designed at present for use by professionals primarily. The competencies needed for three different roles/levels within PBS services are described in great detail. Both what you need to know, and what you need to be able to do, are described. The document is long, and the detail is deliberate. This is essentially an “all you need to know about” document. It can be used by individuals or services to say “what skills do we have, and where are the gaps”. Equally, any training provider’s offer could be checked against this framework – what is this trainer offering in terms of competencies as outcomes, what is missing, what else should we ask for, and from where else could we get the remainder? I am sure that you will be able to think of multiple other ways that the document can be used in practice.

Many people gave their time for free to get this framework written, and it was a process of consensus and editing to produce something that we think is pretty good and that is coherent. Revisions may be needed in future, but this is a good starting point.

You can also read on the PBS Coalition’s blog about Phase 2 of the PBS competence framework project. The idea is not to produce practical guides for various stakeholders based on/consistent with the underlying clarity of the detailed competence framework. These additional resources are unlikely to be as long as the first one! We plan to produce stuff for people with learning disability, family carers, support staff, service providers, and commissioners of services.

As a note of interest – the PBS competence framework has been released under a Creative Commons license. Anyone can download and pass on copies for free to anyone else. There is no restriction. If anyone uses the Framework to develop additional resources, the original document must be credited as a source but people must not suggest that the authors of the original framework endorse the derived materials/resources. Any derived resources/materials must also be made available for free to everyone to use and download/distribute as per the license for the original competence framework. We hope that this means no-one will be excluded from reading and using this work to make a difference to the lives of people with a learning disability, and their carers. The ideas might also be useful in developing resources for work with other groups, such as people with mental health problems, brain injury, or dementia.

Friday, 28 November 2014

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…

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