Day 68: Get a move on #107days

Day 68 was adopted by Beckie, who has been supporting the #107days campaign since the beginning, instigating the bus drawing and supporting our efforts in many ways. Having been knocked back by her local school, undeterred and determined to bring the message of #JusticeforLB to the next generation she adopted a day to use at her local Messy Church service. Here’s what she had to say:

In 1970, Jim Mansell fought to close Ely hospital. When asked later if he might lack the credentials and experience for this reform he said ‘(that) was actually a question that never occurred to me’. Jim (at 18 years old) was not much older than Connor was when he died.

Although the old style institutions have now gone, there are institutions in disguise dotted around every area of the UK. From what I can see, Assessment and Treatment Units (which don’t always do what it says on the tin) can be wolves in sheep’s clothing. All too often, they neither assess nor treat people. People with learning disabilities are not ill. They don’t need to be in hospital. The rest of the world has moved on since 1970 and we should have many more good options for supporting people in their homes and local areas, even when people are experiencing periods of distress and need some additional support.

Day68_1970

When I heard what had happened to Connor and the way that Sara and her family have been treated, I wanted to get involved in this campaign. I was (still am) so angry on their behalf. Today will be spent making patches with family and friends for the Justice for LB quilt. To kick start this off, I asked Kerry and Kat if we could get the children involved at Messy Church. So on Sunday the children of Messy Church spent time making patches for Connor, and Kerry and Kat talked about Connor during the service that followed. Everyone left with a flyer and the knowledge of how to donate to the fighting fund.

This is what Kerry and Kat had to say about why they wanted to get involved: ‘At Messy Church we were made aware of the campaign by one of our Messy Church parents Beckie. We wanted to raise awareness about what happened to Connor and ensure that children and young people, especially those with disabilities and special needs, receive the care they need and deserve. We hope that by getting involved we can not only raise awareness regarding young people with autism and other learning difficulties but also keep the care of the most vulnerable in our society in our thoughts and prayers’.

Day68patches

We have to make this campaign count. It’s time for change. For those behind this campaign, like the young Jim Mansell fighting to close Ely over 40 years ago, it didn’t occur to us not to act. Change is the only option. If not now, when? How many more scandals and deaths do there have to be before we as a society sit up and listen.

The long overdue closure of assessment and treatment units is just the beginning. As a research assistant I have observed some amazing support. But this is the exception rather than the norm. ‘Care’ is not enough. Good quality support should be about enabling people to live an engaged and fulfilling life.

This campaign is for Connor. It’s for all the other dudes and dudettes too. All those in those mini institutions dotted around the country. It’s for the dude with severe and profound disabilities placed in a ‘sensory room’ and left to stare at the walls for 45 minutes, because the staff forgot to turn anything on. It’s for the dude whose only pleasure (watching The Simpsons) was denied to him because the staff decided to dish up dinner just as it started. It’s for the dudes who all said they wanted to go to Spain on holiday and the manager booked to go to Corfu because (and I’m quoting here) ‘They won’t know the difference’.  It’s for all the dudes and dudettes living at Orchard Hill, for when the scandal broke, it was bumped off the news because a Posh Spice got a new haircut. I kid you not, a haircut more important than a person. I have never forgotten you, any of you. It’s time to show that the rest of society has not forgotten you too. It is everyone’s responsibility to act. Enough is enough. The time to act is now. It is unthinkable not to.

One of the joys of managing the #107days blog is getting to pick what each day’s post is called. Today I struggled, there were so many options, it could have related to mess or messy (given the context of the day), it could have been enough is enough (no-one could argue with that), but in the end I went with Get a move on for the double connotations associated with that, Southern Health suggesting in a media interview they’d help Sara to move on, Beckie’s patch above – one of my favourite’s so far, and of course what Beckie’s post fronts up, our seeming inability as a society to really move on in how we support and treat and view people with a learning disability. I toyed with Moving on but we’ve apparently been doing that since Jim’s day. Far too slowly.

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.

Amazing.

 

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.

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ORIGINAL VERSION

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.