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…


  1. So what can we learn from other civil rights movements?
    Do we need a Ghandi, a Martin Luther King, a Pankhurst to be visible and unite us all?

    Very thought-provoking...

  2. Bubb's report won't change a thing- which is why people will continue to try and put their point across. Maybe they should publish the cost of Bubb's report! A but today is Black Friday and people and the media are too interested in fighting over televisions to care.

    1. Reports can't which is perhaps why energy criticising them might be wasted. Could create a context/window of opportunity for some action though - you never know!

  3. It is so wrong that a report by a highly paid and status rich person, external in direct experience to this debate, is given a loud voice.

    While vulnerable people incarcerated in ATU's for years die slowly and silently ''If a tree falls in a forest and no one hears''......etc?

    1. So what's the way to get everyone into that forest?

  4. But did the PBS academy not get (sort of ) endorsed?

    1. Yes it did but that's not my point for today!

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  6. ..positive BS as an observable practice has always existed but you had to be aware of It wasn't an ideology but a human quality commonly practiced by conscious individuals whether to share kindness with a person with Downs syndrome noticed at the town centre or warning a yob carer within the bowels of an institution that if you ever saw him do that to a patient again you'll punch his fucking light out! What does kindness aspire to? We live within a far from perfect humanity characterized by current and historically domineering aggression thus we only live thanks to the balance of terror itself. What can we hope to do to help those with the huge disadvantage of low intelligence compounded by startled fear? ..Large hospitals? ..Small hospitals? ..A&T units? ..Individual person centred services? ..what? Will skills achieved or CB behaviour reduced at a minimal rate of 10% a year in any way actually affect a quality of life? ..unless internally driven for reward via the achievement of a personal goal.. little. So what are any of us here for or likely to achieve to make it all seem worthwhile? Living life as a gas despite regrets ..the foe is anomie ..normlessness ..floating in a compassless sea of lost souls. Families can be hell as we know so what reflects the ideal family group size? ..three couples and six singles? ..exchanging with similar groups ..or something like this .. nine tepees? have sufficient numbers for a meaningful group-dynamic ..’I’m a celebrity get me out of here’ for example has nothing to do with labels or mental speculations about service function or settings but everything to do with groups ..good A&T services typically have groups of less than 15 ..rather 12 extended family they have the potential particularly given their resources to start off with at least one major problem out the way to get started ..a fellow 'A&T' service of Winterbourne, run by the same group .. has thirty! ..Impossible to manage and reflective of nothing save service greed and should be concluded. It’s always easy and fashionable to react against single examples of things globally condemned to join the crowd, pick up your stone and contribute condemnation in the knowledge of instantly approved prejudice. Having worked in two A&T services during 1989/92 and 1999/02 ..I have never witnessed either the kind of behaviour shown by Wayne Rogers and his friends or indeed any abuses that I can recall given the level of group cohesion. Interestingly Winterbourne whistle blower now CQC inspector Terry Bryan is not an activist. The enemy apart from inherent aggression is materialism..i.e. money.. Money, get back I'm all right Jack keep your hands off of my stack. Money, it's a hit. Don't give me that do goody good bullshit. I'm in the high-fi fidelity first class traveling set and I think I need a Lear jet. Money, it's a crime. Share it fairly but don't take a slice of my pie. Money, so they say the root of all evil today. But if you ask for a raise it's no surprise that they're giving none away, away, away, away, away, away, away..

  7. If PBS uses ABA then I'm against it. ABA tried to change the way an autistic person thinks. That isn't going to happen with the methods used which quite frankly are tantamount to torture. You cannot take the autism away nor can you change it and there will come a point when a child that has been through ABA becomes an adult and we realise this. That's when they suffer a huge meltdown after not having had such big meltdowns for quite some time. You can't fit a square peg into a round hole for want of a better phrase. It is time autistic people had a voice as autistic advocates know better than anyone else how to cope with their condition. The best way I've found to learn about autism is through autistic people.

    1. Dear Anonymous - thank you for leaving a comment. I'd not intended that this blog be about PBS. It is about everyone working together, so it would be a shame if certain groups or individuals might be excluded because of the theories and methods that they drawn upon (e.g., ABA). I have written extensively to provide what I hope is a balanced view on ABA, including giving detailed thoughts about what I've heard re objections to ABA approaches. Please take a look at my other blogs, but especially this one: