Day 78: Pass it on #107days

Day 78 was adopted by Rachel Batchelor, we’ll let her introduce herself:

I’m probably best described as a ‘vocal service user’ though I have been called many other things (‘engaged and forward thinking’ was the nicest, though anything from and ‘warrior parent’ to ‘un-necessarily awkward’ via ‘overly academic’ and ‘unusually well informed’, with side orders of ‘stressed’, ‘over-complicating’ and ‘fussy’, not to mention ‘attention seeking’ and my all time favourite ‘probably bored’ (Seriously? if ONLY I had the time).

I’m  sure you get the picture, maybe its one of those nice little snap shots that so many of the pros mention. You know the kind of thing ‘I just need a snap shot of things for the file’, one taken when they flit in and out of peoples lives, creating paper work and often not much else.

One of the places I get my ‘unusually well informed’ perspective from is a long relationship with the Tizard Centre. As a result I often read blogs and articles posted on the group facebook page, a useful weather eye on what’s-what. It’s where I first read the My Daft Life blog, and the awful chain of events described there.

As has been said by many others in the past weeks, we get used to things being crap. It comes from having to hit the ground running and deal with other people’s system failures, organisational re-structuring, policy shifts that change with the wind direction, endless blah-blah chains of words which acknowledge little and promise less, ‘the usual’, all while trying to manage complexity and just get on with things in general. Even with the whole ‘used to things being crap’ as a starting point, the story of LB and his family is so shockingly dreadful that I find it hard to articulate my response. I don’t usually join protest campaigns, but this one is different.

This is what Rachel has been doing:

I offered to raise awareness of the campaign by discussing the case with 107 people and to ask each of them to discuss it with at least one other person, to pass it on. It has resulted in some complex conversations, some brief discussions, and one or two people who simply stared in disbelief that a death had occurred in specialist setting, how? HOW? could such an awful event be possible? Several people queried how it was possible, given Winterbourne View that things were still so bad (I still can’t give a coherent or printable answer to that question). One or two friends who had seen press coverage of LB’s case said that they were struck at how similar the various systems failings were to other cases they knew about, though thankfully those cases are without fatality.

All in all an interesting set of conversations which fell into two broad groups, those who felt shocked that something so appalling has happened and those who quietly reflected that the deeper shock is, the realisation that it is remarkable that it doesn’t happen more often. That gives pause for thought, doesn’t it?

I was lucky enough to raise some of the issues in the campaign with a group of students undertaking specialist training in Autism. I tried to illustrate my points with some of our own experiences, to draw a parallel with how easy it is to ignore family expertise, the corrosive effects of professional turf wars, and how much time and resource is spent getting things wrong. How much energy is spent making parents and families ‘the problem’ while over simplifying the needs of the person at the centre. One of the questions we get asked most, is ‘and what single thing do you think is most needed? hmmmm?’ to which the only polite reply has to be, ‘for people to stop thinking there is a single answer’.

If though, for the sake of argument, I could try and focus on a single ‘what is needed’ issue, here it is. Communication. Why is it that those who are willing to learn fluent jargon (specialist terms for communicating with colleagues) have no sign language or PECs (specialist skills that can be used in many circumstances). Working with a client group who are at the very least, likely to have communication difficulties would seem to call for good and useful communication skills. So, my one simple idea is could all professionals learn to recognise and accept communication differences and move on? The training exists, PECs, Signing (BSL, Maketon), Somerset Total Communication are well researched and available. How many challenging behaviours are due to communication issues and fear?

It may, also help all those involved in a persons care to LEARN TO LISTEN whether that’s to families, colleagues from other disciplines, and importantly, to the person at the centre. Fill in those partial snap-shots into something more coherent.There is no single simple solution to complex situations so at least acknowledge the complexity. However we do know what doesn’t work and we do know what does work, Jim Mansell wrote it all down in clear, informed language for all to read. So maybe, here’s another simple idea, read the Mansell report and just implement it?

We might be used to things being crap, but there is no reason why we should accept that as an unchangeable situation. Please pass it on.

Rachel also pointed out that as the D-Day commemorations happen this week it is probably as good a time as any to revisit the Universal Declaration of Human Rights, the global response to the horrors of two World Wars, the document which ultimately underpins all our equalities legislation. Rachel’s view was that more people should read it, especially Article One, which states ‘All people are born free and equal in dignity and rights’.

Right to Life

I completely agree with Rachel, but you really need to read the whole thing, and Article Three would appear quite relevant to much of social care and health support for people with learning disabilities, more on that from Lucy Series here. Now, don’t forget Rachel’s request and please Pass It On.

Day 23: Jim Mansell Memorial Lecture #107days

Since we started what has become the campaign for #JusticeforLB our friends at The Tizard Centre have been nothing but amazingly supportive. Tizard is an academic group at the University of Kent whose work is centred on learning disability and community care. Jim Mansell was the founder of the Tizard Centre, and a truly amazing man. As a young 18 year old zoology and botany student at Cardiff University, Jim took it upon himself to take notice, to step up and to do something about the appalling conditions people with learning disability were experiencing in Ely Hospital. You can read more about how and what Jim Mansell did in his obituary here.

Jim Mansell

This year the Jim Mansell Memorial Lecture will take place on Day 23 of our #107days, Friday 11 April. The lecture will be given by Patricia Howlin, Emeritus Prof of Clinical Psychology at the Institute of Psychiatry, London and Prof of Developmental Disorders at the University of Sydney. Her lecture will focus on “What happens to people with autism when they reach adulthood?” and we are delighted that it will begin with the following video in celebration of the life of LB.



Day 3: Letter for Connor #107days

12 JUNE UPDATE: The letter has been published in The Guardian today to coincide with the House of Lords debate on premature deaths of people with learning disabilities. The final text and full 560 signatures/names are available to view here. If we missed you off, or you missed the opportunity, please don’t worry. You can add your name in the comments if you wish, but there will be further opportunities to get involved with letter writing this weekend, Day 85.

We believe that the success is in the collective action, not individual names, and we’re very grateful to those who have worked hard to get this written, edited, comments taken on board, and submitted in time for today’s debate. Especially Jill and Chris. As ever thank you to all of those supporting us, whether your names are on the letter or not x

UPDATE: The revised and shortened version of this letter is below. If you would like to sign this letter, and you haven’t already provided your name, please email Jill with the email title ‘Signing in support’ and your name as you would like it added to the letter in the body of the email by June 13th. Thank you….

Justice for LB letter to The Guardian

Final draft 6th June 2014

The Guardian has reported (Guardian Society 21 May) on the preventable death of Connor Sparrowhawk  (nicknamed LB or Laughing Boy).  Connor was placed in a small, highly staffed, specialist assessment and treatment unit for people with learning disabilities (LD).  He had an epileptic seizure and, unobserved by staff, drowned in the bath. The #justicefor LB #107days campaigns are about getting justice for Connor and changing the status of people with learning disabilities and their families within services and society.

Over 3,000 people with learning disabilities and/or autism in England are in similar units at a cost of over half a billion pounds per year. People are likely to live in these units for years, to be placed a long way from home, to be treated with major tranquilising drugs and to experience self-harm, physical assaults, restraint and seclusion.  Currently, more people are being transferred into such units than are transferring out.

We believe that support for people with learning disabilities and/or autism and their families should have four basic principles:

1) We should support people to live long, healthy, fulfilling and meaningful lives.

2) A learning disability and/or autism is not a health problem.  Any additional health problems should be taken seriously and we should make sure that our health services work just as well for everyone who uses them.

3) We should respect, value and work closely with families and others who care about the person.

4) We should make sure that commissioners and providers are using the best available evidence to make decisions. 

For over 20 years we have known how to do this. We know how to provide good support for families with young children. We know how to support people’s health needs. We know how to support people, including people who are distressed, to live active, meaningful lives within their local communities without the need for specialist drugs or major tranquilisers. And we know that all of these things depend on people with learning disabilities and/or autism and their families being respected as equal citizens.




Day 3 was adopted by Jill Bradshaw and Julie Beadle-Brown of The Tizard Centre. They have drafted the following letter. We are now looking for comments, edits or additions for this draft *and* for people who would like to sign it. We hope to gather at least 107 signatures, hopefully more. Please add any thoughts and your name as a comment to the draft. If you exist on social media anonymously but would still like to sign please email us.

Connor Sparrowhawk spent 107 days in an Assessment and Treatment Unit (ATU).  He drowned in the bath.  An independent assessment concluded that his death was preventable.  We have come together over the last months as a collection of individuals who are shocked and outraged by what happened, as a group of people understand that we are all responsible for what happens to vulnerable people in our society.

We would like to highlight the following points from the independent report:

  • The lack of appreciation of Connor’s family as having expertise about how to care for him.   It is astonishing that Connor’s brother was not allowed to visit, despite there being nothing in the policies to suggest that this was not allowed;
  • The lack of training, skills and leadership in managing epilepsy and in using person-centred approaches;
  • The lack of understanding and awareness of autism spectrum conditions;
  • The lack of practice leadership;
  • The woefully inadequate care plan;
  • The lack of understanding about mental capacity and the issues around supported decision making.

Many of the recent reviews and reports were clear that the majority of people living in ATUs should not have been there in the first place and should certainly not have been there for the length of time that they were.  NHS England statistics highlight that, of the 2577 people recorded as living in ATUs ,only 260 have transfer date and only 107 by June 2014 deadline.  More people appear to be going in to ATUs than are being moved out.

Connor and his family needed some additional services at a time of crisis.  There were limited local services which could be purchased.  This is unacceptable.  Why are we still not providing good local services?

Some issues to think about:

Did you know that in Norway it was made illegal to establish a service for people with intellectual disabilities for more than 10 people…..? In the UK it is still legal to set up a service for 30, 40 people.

Did you know that economies of scale do not exist if you care about whether people experience at least relatively good outcomes?   The bigger the service, the fewer the staff, and the less time staff spend with people and the lower the levels of engagement.

Did you know that people in supported living or those receiving individualised services are more likely to be receiving good support?

Did you know that good support is not guaranteed, regardless of how much the service costs?

Did you know that good support depends on the skills and motivation of staff working in the services and the leadership they receive?

Did you know that you can’t judge the quality of the service just by talking to the people providing the service, that you have to go and spend time observing (in addition to talking to people themselves where possible) to find out information about the quality of life of the people living there?

Did you know that only between 20 and 30% of people with learning disabilities receive good and consistent support that enables and empowers them?  Those with more complex needs including challenging behaviour are less likely to get good consistent support.

Did you know that even in services which are considered good……..

  • on average, people with IDDs only spend around 40% of their time engaged in some form of meaningful activity or interaction?   (By the way, this is the level of engagement  that we also find for people who are in their 80s).  Think about it – an average of 60% of the time doing nothing meaningful.
  • on average, people with IDDs will only have any contact (from staff or anyone else) for at most, 15 minutes in every hour?  That figure also includes negative contact, being told not to do things, having things done to you, just having your wheelchair pushed etc.  Imagine it.  That means for 45 minutes in every hour, no one talks to you or touches you. What a life of isolation…..

Did you know that on average people with IDDs are likely to get direct help to take part in meaningful activities and relationships for less than one minute in every hour?  (Isn’t that the point of services – that people need this help to take part in activities and relationships?)

Did you know that it doesn’t require more staff or cost more money to provide good support for people than it does to provide mediocre or even down right awful support for people?

Did you know that researchers in the UK have generated more research and resources on how to provide good quality services and support for people with intellectual disabilities and people with autism than almost anywhere else in the world?  What would Jim Mansell have said? Well actually he (and many others) have already said it.  It is all there in the Mansell reports.  Now all we need is action.

Tizard Centre have also adopted Day 23, the day of the Jim Mansell Memorial Lecture.