Day 62: Learning Disabilities Elves get to work #107days

Day 62 was adopted by Nikki, John and André, three of the somewhat magical beings behind the Learning Disabilities Elf blog. If you’ve not come across their blog before you really should check them out, they contain a wealth of information. Each week the elves get to work and scan new evidence from websites, databases and journals, and identify what is important to professionals working with people with learning disabilities, in health or social care. When we asked them why they chose to support #107days and #JusticeforLB this is what they had to say:

Nikki Newhouse

When I was asked to write a short explanation of why I wanted to get involved with the #107days campaign, I sat for ages, blankly staring at the computer screen. All I could think of was why anyone wouldn’t want to get involved. Contributing to a tiny piece of the huge #107days campaign armour was just such an obvious thing to do. Yes, I am a mother and yes, I know Connor’s mum Sara but, like I say in the blog post, Connor’s death has affected a lot of people in a lot of unexpected ways and I am one of those people. Bizarrely, after years working in the mental health field, raising awareness, advocating change and fighting for fairness, something ‘clicked’ in me after Connor’s death. I guess I have come to understand what the responsibility of making a difference really involves. Change isn’t some abstract ‘thing’, ‘out there’ that just ‘happens’; it is the slow but steady accumulation of lots and lots of voices, tears, words on a page, media noise created by people like you and me, that builds into an angry, indignant, desperately hopeful roar. This is day 62 of 107 but these 107 days are just the start.

John Northfield

Like Nikki, it was easy to say yes to getting involved in the #107 days campaign to make what small contribution I can. Thinking about what the Elf could bring to the campaign, I was very aware that whilst we are all about pointing to what the evidence says about good support, often that evidence may not be considered ‘gold standard’ – we are not able to report lots of meta-analyses or systematic reviews, and there are lots of concerns about research methodology. But despite that, there is good evidence of what works and examples of good practice. The guidance available to professionals is voluminous, and the key messages about what needs to be done are becoming very clear –personalised support, positive behavioural approaches based on clear functional analysis, the provision of active support and respectful partnership with families. All these things are necessary building blocks for good services. The pace of change remains frustratingly slow, but we hope we can make what little contribution we can by continuing to provide easy access to the evidence.

André Tomlin

Connor’s tragic death is yet another wake-up call to a health and social care system struggling (and sometimes failing) to cope with the complex needs of people with learning disabilities. We have heard so many heartbreaking stories over recent years of people who have not received the care they deserved and of simple mistakes that have had fatal consequences. Our aim with the Learning Disabilities Elf website is to bring reliable research to the health and social care professionals who need it most; to help them improve their practice and in turn to improve services for patients. There is no magic wand to change the system and prevent future harms from being committed, but there are lots of examples of good practice that we can promote to staff who care for people like Connor on a daily basis. Ultimately, the system is still a long way from providing the kind of care that people need and deserve, but if we make evidence-based research a core part of that system, then we will give health and social care professionals the knowledge they need to provide better care.

In the spirit of making a practical difference they scoured the evidence and Nikki wrote a post for Day 62 that focuses on what the evidence says about people with learning disabilities and unmet need.

Day62NikkiElf

Here Nikki introduces the post:

The reaction to Connor’s death has been huge. Outrage and desperate sadness have fuelled what is ultimately an overwhelmingly positive, proactive and determined campaign for change. #107days of action started on Day 0: Wednesday 19 March, and will continue until Day 107, the first anniversary of LB’s death, Friday 4 July 2014. Today is Day 62.

I work with Connor’s mum, Sara. It was unusually busy in the office, the day that Connor died, with many of our group’s normally nomadic researchers home to roost. As Sara ran out of the office, phone glued to her ear, none of us had any idea what was coming. As a research group dedicated to giving a voice to people’s experiences of health and illness, we are all used to doing our very best to maintain a healthy distance from the often sad and disturbing stories we hear. This was different and Connor’s death has changed us all.

The ups, downs and general hilarity of life with Connor are well-documented by Sara in her blog, as is the pathway to Connor’s admission to the local psychiatric learning disability unit as his behaviour became increasingly challenging. Her accounts of his growing agitation and anxiety and the monumental frustration and effort involved in navigating the mental health and social care system are at once moving and infuriating. The post on the day he was admitted to the unit is bitterly poignant, tinged with both relief and disappointment, completely unaware of the horror on the horizon. Following his admission to the unit, we see Connor being funnelled down a heavily-scripted, non-patient-centred path, and Sara’s blog posts make one thing startlingly clear: a marked deterioration in Connor’s state of mind and sense of self, leading to him being sectioned, medicated and misunderstood. Having been neatly categorised as “learning disabled”, Connor’s epilepsy went ignored. This myopic approach ultimately caused his death.

However, this is not a soapbox rant or naïve call to arms. The unit in question has been closed to new admissions, the legal fight for justice is trundling along. Rather, I asked to write a blog for one of the #107 days because I want to be part of the growing army trying to jump-start a conversation about why it is that our learning disabled and mentally ill friends, siblings, parents and children are still so marginalised by our health system. Despite our apparent familiarity with words and phrases like depression, Time to Change, patient-centred and equitable in our public discourse, we still treat people with learning disabilities and mental health problems like second class citizens. We all know that mental ill-health is common, affecting one in six adults at any one time and we also know that people with learning disabilities have an increased likelihood of developing mental ill-health, with figures ranging from 25-40%. So can it be that research consistently highlights evidence that people with learning disabilities have higher levels of unmet need and receive less effective treatment?

Please visit the Learning Disabilities Elf blog to read Nikki’s post that summarises the evidence, for Connor. Please also join in the discussion, we need to understand why when we have evidence, it is not shaping practice. As ever, all your thoughts are very welcome.

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.