Week 10: LB and the #LBBill #107days

Yesterday’s post has got us off to a fantastic start with telling MPs about the #LBBill, so thanks to all of you for your help with that. Today we’ve a post from Sara reflecting on LB and the #LBBill.

A while back I was asked by a journalist (could have been on BBC Radio but I can’t remember now) if the #LBBill would have made a difference to what happened to LB. I am really not a natural or keen radio or TV interviewee, particularly when it’s to talk about something so horrific, and this question struck me as simply too sad. I fluffed it.

Now it’s time for action with the Bill, it probably is helpful to think through how the proposed changes to the law could have made a difference. [Howl.] First of all, LB should never have been admitted to the unit. If a range of meaningful ‘in-home and community support services’ were available [Clause 1] I don’t think LB would have become so anxious and depressed in the first place. He loved learning to be a mechanic at TRAX. He worked there the day before he died. If there were more opportunities like that and support available to help people access the stuff they want to do (i.e., the stuff that other people just get to do), I’m not sure LB would have got so down. Oxfordshire County Council (OCC) funded support included a 5 day holiday akin to a boot camp with learning outcomes attached to every waking moment that LB hated, and a peer buddy scheme which failed to attract young people and so LB was buddied by someone our age. Simply not good enough.

Once we reached crisis point, Clause 3 would also have prevented LB’s admittance. There was no crisis care. Just a number to call and be told to go to the out of hours GP. The modus operandi, certainly in Oxon but I suspect pretty much everywhere else, is to rely on families to do the graft and when things have escalated way beyond what most people could endure or ever dream of enduring, it’s off to the ATU. Instead of chucking more direct payments (as meaningless as trying to spend drachma in the local pub) and talk of ‘respite at a building with a snooker table’ at families in crisis, the local authority should make sure a suitably trained, experienced, enthusiastic and caring team are on call and available to work with people and their families to try to avoid the need for admittance.

Slightly ironically (and I still don’t really understand this), the commissioners were apparently happy to indefinitely pay £3500 a week for substandard care at STATT. LB had no desire to live anywhere other than home at that point so Clause 2 was less relevant to us.

Clause 4, which is about securing the most appropriate living arrangement, would also have offered LB some protection against what happened. A review of the new ‘living arrangement’ (which we thought was a short term fix) 3 months from the day it commenced would have happened around June 19th. As it was, nothing was done about getting LB out of the unit other than a meeting eventually organised for July 8th (with the pushing of LB’s head teacher despite OCCs grandiose claims to the contrary).

Clause 5 was also less relevant to LB again because he was still at school and should have been living at home. Like most kids do. This clause is very important to those people who are living independently however. Most people have a choice about where they live. It’s astounding really that we’re trying to change the law to protect people from being moved against their wishes.

One of the things #JusticeforLB has achieved is shining a spotlight on the murkiest of practices that continue in health and social care. I was chatting to someone the other day who said they read our posts with a mix of incredulity and horror. That light shining is embedded within the LBBill, particularly in Clause 6 which places a duty on local authorities and the NHS to report annually on all their living arrangement activities (with full disclosure on the when, why and hows involved), and the Secretary of State to summarise these in an annual report. This is bloody brilliant really and I hope, if the Bill becomes law, there is clear and careful scrutiny of this data at both a local and national level. Using lenses with aspiration, imagination and happiness etched in gold around the frames.

Clause 7 involves sensible rewording of the Mental Capacity Act and Clause 8, again sensibly, removes learning disability/autism from the Mental Health Act. Er, because neither are mental health issues. Clause 9 makes sure that despite Clause 8, people can still access mental health services. [I know].

I also love Clause 10 [I love it all really but some bits are stand out stars for me] which is about being open and transparent with the person whose ‘care’ or support this is about. A chewy bit of ‘nothing about us without us’ which is so blinking obvious. Invite people to meetings about them, give them free support to attend, let them respond in whatever form they choose and communicate the decision from the meetings in an accessible form. Bam. As simple as. And shameful it doesn’t already happen often.

LB was only invited to the last 10 minutes of the Care Plan Approach meeting during his 107 days in the unit. He wasn’t told about the weekly meetings or informed of what was said. Despite all the nonsense about making us get his permission to visit him daily, not one member of staff communicated anything meaningful to him about why he was in there. But that was because they didn’t know why he was there and no one bothered to put the support in place to enable him to come home. A situation that would not be possible (or certainly should not be possible) if the law is changed in the way we are proposing.

The Bill finishes with a bit of welly wielding stating how the Bill will be enacted [Clause 11] because there ain’t no point in changing the law if the law ain’t followed. So that’s it. A more coherent answer to the journalist.

And the short version:

“Yes. LB would probably be lying on the floor right now, playing with his footy guys and chattering away to Chunky Stan.”

Please support the #LBBillLBChunkyStan

Week 6: A different kind of revolution? #107days

Week 6 is exploring the question of whether we need another inquiry into learning disability ‘care’. Mark Brown has written the following guest blog, related to this question, calling for different kind of revolution.

I got a tweet a couple of nights ago. It was a great blog post from Chris Hatton called The Four Staplers of the Apocalypse. In it he argues that David Graeber‘s theories on bureaucracy can be applied to the way in which the state interacts with the families of people with learning difficulties. When I first read it I totally agreed with him. For so many of us the state and its systems are oppressive. It seems to exist for its own ends and there is a tacit acknowledgement on the part of most of us, that challenging it, is likely to end badly for us.

I agreed with all of that, but later I was kind of disappointed. Not with the essay itself but with how it left me. The sentence:

the increasing stranglehold of bureaucracy over all aspects of our lives has become almost total, such that any alternative to bureaucratic ways of organising society is literally impossible to imagine

hung over me for much of the day. As oppressive in its pessimism as the state that gives rise to it. And although Chris rightly cites the JusticeforLB campaign and Human Rights Legislation as reasons for optimism he loses me in the final paragraph:

Finally, I have hope in those professionals and organisations that are trying to reconnect to the human, based on human rights principles. Can organisations supporting people with learning disabilities and families operate by engaging people honestly, as human beings, without the threat of violence lurking behind inhuman rules that are impossible to fulfil? My hopeful answer is yes.

The issue is not that there aren’t professionals and organisations out there struggling to reconnect with the human. It’s that without our help they can’t, because practitioners with integrity are almost as much victims of the state and its bureaucracy as we are. It oppresses any who challenge it without discrimination. I don’t believe it’s time for hope. I think it’s time for action.

So how do we change it? I totally agree with Chris that the fundamental building blocks of any change can be found in the JusticeforLB Campaign and in the existing Human Rights Legislation. But as things stand the ability of both to bring about systematic change is limited by the inertia of the system and its ability to produce and control what we know about how it’s actually performing.

Or to put that in plain English, they get away with doing things as badly as they do because they have control of what we know. They decide what research to fund. They decide what to measure and perhaps more importantly what not to measure. They also marginalise and stigmatise those who challenge them. For me the principal purposes of a bureaucracy are to sustain the illusion of competence when none exists and to neutralise individuals who challenge it.

And perhaps that’s where the beginnings of a solution lies. What would happen if we knew exactly how things were for families across the country? What if we knew how many Carers hadn’t had a Carers Assessment? What if we knew how many local authorities weren’t meeting their obligations under the Care Act and Children and Families Act? What if we ripped away their ability to pretend that things are fine? Then rather than using the law to protect individual people and their families, maybe then we can use it to protect whole communities.

DataRevolution

A couple years ago this idea would have been absurd. But changes in social media and the web mean that our ability to develop this kind of data has actually become relatively easy. We can build on the networks that already exist, we can share experiences and create user led evaluations of local and national service provision, in short we can break their institutional monopoly on data and we can undermine their ability to isolate.

That may not sound that sexy and as revolutionary slogans go “power to the people – develop data” probably doesn’t represent one of the pinnacles of revolutionary rhetoric. But it would give us as a community and our allies, an enormously powerful weapon in our struggles against the inertia of the state and its bureaucracy. Because ultimately their legitimacy is based upon their bureaucratic control of our voices and their ability to convince the wider world that everything is just fine.

Like Chris I have hope in the ability of some practitioners to transform the system but I have much more hope in the strength of our community and the transformational power of our experiences. Personally I think it’s time for a different kind of revolution.

Day 104: Voices to be heard #107days

Today is another three way share, this time between Sunnyside Rural Trust, Bringing Us Together, and inControl.

First up, Sunnyside Rural Trust who adopted today to share a report of the celebration and launch (yesterday) of a special and innovative Memorial Garden. The garden, which is a physical representation of the poems collected in The Memoir Garden, has been created as a place for remembrance.

A group of 18 trainees from Sunnyside Rural Trust, who all have learning disabilities, worked with local author Emma Claire Sweeney. She explored their reminiscences and collaborated with each one to produce a poem. The resulting book, The Memoir Garden, was well received both by literary critics and by the learning disability community.

Day104Garden1

The participants valued this all too rare validation of their experiences. At the launch, Roxy Simmons, one of the 18, read a speech prepared by the group, saying “We thought it was important for people to understand about our lives. We don’t want people to think that we are thick. We want people to know that we have the same feelings, relationships, and experiences as everyone else. We will maintain the garden together as a place of peace and quiet where we can sit and reminisce. In particular, this is a space where we will remember our old friend’s Leon and Marie”.

Day104Garden2

The garden was completed within 107 days to support the #JusticeforLB #107days campaign. The work on the garden has been carried out by the team at the Activity Centre along with volunteering help from Berkhamsted Waitrose. Painted glass bottles, depicting images from each poem along with the poet’s names, hang from the trees. The garden’s centrepiece, a wooden sculpture of a book, was unveiled at the launch. The sculpture is engraved with the words ‘Voices to be heard’.

You can read the full press release from the event yesterday here. Next up, Bringing Us Together:

The #JusticeforLB campaign highlights our fears as parents. It has had a profound impact on many of us and has brought us together as we reflect, feel emotional and share our fears. Each of us knows that this could happen to our own son or daughter.

We are fearful that our young people’s voice will be lost, that they will not be listened to and that we, the people who love them the most, will be left out of vital decision making. We have huge concerns about the following questions:

  • What happens to our young people when we are dead or no longer able to look after them ourselves?
  • How do we keep them strong and supported to make decisions that have a huge impact on their lives?
  • How do we keep our young people safe as they grow up into a world that is full of prejudice, fear, abuse and discrimination?
  • How do we keep their voice at the centre of all planning and decision making?
  • How do we convince others that our sons and daughters, whatever their level of impairment, have a voice that must be listened to if they are to be happy, strong and safe?

For many of us our years of involvement and knowledge of our own children and the systems they encounter brings us a deep insight into our children’s well-being. We know what makes them happy, how they communicate and what support they need. We know what they are trying to say and we work hard at sharing that information with others.

However, only too often our understanding is ignored; our young people are misunderstood and problems arise. We want our young people and adults to be independent and safe. We want our children and young people to grow up knowing and feeling what it is like to be in the ‘driving seat’ and to understand the real power of making decisions, what good looks like, and what support they need to be part of their communities.

Our event to mark Day 104 of #107days of action for #JusticeforLB will give families the opportunity to come together to talk about and share stories of:

  • The madness of the system and what we can practically do amongst such madness
  • How can we make the system less mad? We will look at what is working and what is not working in the current system
  • How do we keep ourselves strong within the current madness?

Through telling our stories and using positive ways that families have used it plus ways in which it has been abused will enable families to learn from one another.

The event is a collaboration between The Cameron Trust, Bringing Us Together and the Centre for Welfare Reform.

Last, but by no means least, is In Control:

For the past eight years, In Control has been working with a growing number of services, children, young people and families. Although this work often focuses on the systems needed to make personal budgets work, the real drive to this work is ensuring good support for all children and young people, and the recognition that some may need more support than others. We never loose sight of what this is really about…valuing and cherishing every child’s right to aspire, learn, enjoy and take part in the life of their family and local community in ways that make sense to them, and for families to get the support they need to provide a healthy, happy and nurturing home for their children.

The experience of LB and his family is one of many recent reminders that we, somewhere along the line have a gone a bit off track, have forgotten why we are supporting children and young people and have ended up with systems and support that lead to tragedies like those of LB and his family. We are starting our day (Day 104), chaired by Miro Griffiths, with a presentation by two parents, Nikki and Tricia. Nikki Delgarno, mum of Ethan, and Tricia Nicoll, mum of Ella and Cieran, both share a powerful story of the challenges of the system and the resilience needed to keep going.

But what does the future hold for Ethan, Ella and Cieran? With over 100 people from children’s services, including many parents, we have a chance to discuss and set out how we can change the future for these and many other children and young people, for us and the community we work with every day. Day 104 is an opportunity to step towards ending such experiences as those of LB and his family, of Josh and his family in Cornwall, of Nico and many others.

Following Nikki, Tricia and a group discussion we will be hearing from those involved in leading the Winterbourne programme and from Action for Children who will share a great example of what is possible if everyone commits to working together and supporting a child and their family. We will share presentations and notes from the whole morning and as suggested by #JusticeforLB we will be asking everyone to commit to taking one action which will make a difference for children and young people they know.

With so much awesome happening today, we’re feeling ever more confident that #JusticeforLB really will result in improvements for all dudes. Thank you all.

Day 101: An animated, poetic call to act #107days

Day 101 is another shared day, this time between David and Trish.

This is what David had to say about why he chose to support #107days and #JusticeforLB:

When I first enquired about sponsoring one of the 107 days I wasn’t quite sure what I was going to do, I just felt compelled to do something. Having agreed to prepare a prezi with Sara for her slot at the 3 Lives Event earlier in the year and then meeting her and listening to her speak, for me this was a no brainer. Why? Well, because aside from the sheer frustration I felt at hearing Connor’s story,  seeing Sara hold it together whilst presenting in order to get everyone to sit up and recognise that this actually happened. I was also very embarrassed. Embarrassed by the fact this could happen, embarrassed that this has happened so many times before, and embarrassed that I am part of system that has let Connor and so many others down so badly.

When I think about my own career and what has driven me to want to do more, make change and challenge this very system; I cite three core experiences all of which resulted in the self same feelings of embarrassment, annoyance and at times times anger. I offer these here, for the reader to contemplate, digest and act; yes to act. Just in the same way you have taken action to arrive here at this very site, to read these very words and to want to make change and denounce any form of abuse, neglect or infringement of rights.

So, number one. In 1987 whilst working in a residential care setting I accompanied four people with learning disabilities to visit a local pub. Sadly, no sooner had we purchased our drinks, the manager beckoned me over and said ‘no disrespect mate, but I don’t want them in my pub’. I had to go back to the people I was with and ask them to ‘drink up’. We were made to leave and all eyes across the pub tracked our departure as we were ushered out. The next day I complained to the brewery and went to the local press. The community revolted and the landlords reputation was besmirched. Justice.

In 1991 whilst undertaking my nurse training, I observed two members of staff assault one of the residents of the home where I was on placement. I wont go into the details, but lets just say this happened out of the blue. On their part, I never really got to know if this was some random act of boredom, a show of their status or prowess, a reminder to the people who lived there to ‘know their place’ or simply ‘a game’ like the ones staff described  during the panorama footage. When I spontaneously reacted during this event, I was taken by the two staff members (interestingly both of them were ex military personnel) and dragged outside in the snow and into a closed courtyard. I was given a clear message that I ‘better not mention this anything to anyone, or else’. The next day I made a formal complaint and reported what I saw. An investigation ensued and the two thugs were later dismissed. Justice.

In 2001 I supported a gentleman with learning disabilities to attend a hospital appointment in relation to the chronic ulcers on his feet and legs. During the course of the appointment the Consultant, without asking, led seven medical students into the cubicle and proceeded to talk to his protégé’s about this gentleman’s ulcers and his ‘mental subnormality’, bestowing on them, what he evidently thought was of scientific value. The gentleman, as the patient, dealt with this by pulling the jumper he was wearing over his head. The Consultant quite oblivious to this continued his oration, going on to make the announcement that the ‘best thing for this patient is to amputate his left leg’. I was incensed, outraged and again, embarrassed. The next day I wrote a letter of complaint to the Chief Executive of the Acute Trust, but instead of merely relaying my annoyance, I proposed a solution. This was gratefully accepted by the Chief Executive and as a result, my colleagues and I developed a package of awareness training for both existing hospital staff as well as medical students.

David feels strongly that sometimes we all need to act. In fact I’d go as far as to say (personal view) that by not acting, we are all endorsing this dire level of status quo, therefore we should not just feel embarrassed, but also culpable. David chose to act in Connor’s name too. He has crafted a very personal interpretation of what happened to LB. It has taken many hours of time, and much love and persistence (whatever you’re imagining double it, including one version becoming corrupted hours from finishing requiring him to start again). David could have very reasonably quit at that point but he persisted and produced this for you all to enjoy, and act on:

Sometimes assertive action is required, it’s a response to these kind of episodes, its not often the way you would have wanted things to go, but instinctively you feel you just have to do something, make change, denounce abuse or uphold peoples rights. The animation is my interpretation of Connor’s journey through the Assessment and Treatment unit. #JusticeforLB? I hope so.

David’s animation is accompanied today by another creative endeavour to act as a prompt for thought, reflection and action. Trish had this to say about why she is supporting #JusticeforLB and #107days:

I am shocked and horrified by LB’s death and by the 1200 premature deaths per year of learning disabled people in our care, that’s our care, public provision. And by the determination not to look too closely into those deaths (no review board to help find and fight underlying causes). Including the death before us – missing brain tissue? Optional pathology guidelines?

We need to speak, don’t we?

Trish has penned this poem in memory of LB:

Learning Disability 2013: in memory of LB

A child, my father, playing in the fields,

needed the bathroom in his old friend’s house,

took a wrong turn – opened another door –

came face to face with a much older child

he’d never seen before.

He is long gone, I don’t know what they said.

 

Bewilderment and awe played on his face.

How many families hid a child? he asked,

not spoken of, perhaps the doctor knew,

perhaps the priest. Why silence, was it shame?

more likely fear – there wasn’t any help.

Except the institution.

 

DON’T

say it couldn’t happen here!

Don’t say we offer treatment, pay for care,

When all too often there is no-one there,

urgent requirements must wait weeks or months,

and information’s scattered on the wind!

Stop the bus!

You have the wrong driver –

roaring us back to the horrors of the past!

 

Skilled carers with the families could ensure

the bus is going in the right direction.

To a place of joy, space and old buses,

to the farm for days of work and giving,

home to parents, brothers, sisters, rest.

Day 93: 107 London buses #107days

Day 93 was adopted by Steve Hardy, a Consultant Nurse who got in touch early in our campaign to offer support, connect us with WeLDNs and many others. We are really grateful for his enthusiasm and leadership, at a time when many working in this field sank down in their seats a little, Steve stood up and ensured his voice was heard. Today he is doing a very special challenge for #JusticeforLB. Here’s what and why:

I can be a little obsessive as I receive daily Google alerts on news stories concerning people with learning disabilities. One afternoon earlier this year an alert came through with the Investigation Report into Connor’s death. It’s hard to describe how shocked I was. I then tweeted the story and found there was a growing movement across social media to find justice for Connor.  I have worked in the NHS for people with learning disabilities for 25 years and the NHS is somewhere that any individual, with a learning disability or not should be safe.

I want to do something personally to promote the campaign for #JusticeforLB, for Connor and his family and help make sure that nothing like this ever happens again.

Due to Connor’s keen interest in buses I have chosen to complete 107 bus journeys in one day across London. I will drop in on some services for people with learning disabilities along the way to spread the word.

Steve has written this guide to share with people on the day and he looks like this, so keep your eyes peeled for him:

Day93Steve

Steve will be tweeting about his journeys and you can also sponsor him if you’d like to make a donation here.

Here’s Bus One of the 107:

Day93BusOne

Day 89: Calling for candour #107days

Day 89 was adopted by Lisa Hinton, who works with Sara. This is why she wanted to be involved, and what she did:

I’m a colleague of Sara’s, and have followed her passionate blog about LB’s time in the unit, and the enormous struggles she and the family have had since he died. I wanted to do something for the 107 Days of Action. A former journalist, I decided to put my old journalists shoes back on. What could we do to raise awareness of what happened to Connor and the failings of the health and social care system in responding to his death?

After considerable thought Lisa decided to contact an expert in patient safety, who has been explicit in the need for candour in cases such as LB’s. This is what happened next:

This led me to Peter Walsh, Chief Executive of Action against Medical Accidents (AvMA) the UK charity for patient safety and justice.

Screenshot 2014-06-16 12.28.26

AvMA provide advice and support for the victims of medical accidents and campaign to improve patient safety in the UK. Peter agreed to meet me and we talked about why learning disabled people get such a raw deal in the health and social care system, why families have to fight so hard to get justice, and what changes need to be made to ensure that what happened to Connor never happens again.

What follows is two videos of the interview between Lisa and Peter.

[youtube http://youtu.be/OCcAujOkkQI]

The first video covers introductions to Peter, to AvMA and it’s work. The lamentably slow progress to improve services for people with learning disabilities is discussed, the lack of priority given to provision for people with learning disabilities and the need for greater priority to be given to the safety of patients with a learning disability. The role of tragic cases like LB’s is discussed, as is the progress in patient safety since the Confidential Enquiry into Maternal Deaths was established sixty years ago. Advice for parents of people with learning disabilities is touched on, as is advice for bereaved parents.

[youtube http://youtu.be/FR5rcCZRtXs]

The second video discusses LB’s situation in greater detail, including corporate manslaughter. It touches on the language, and reporting of never events, factors that contribute to system failure, and the yet to be introduced, new offence of Wilful Neglect. The Francis Report, the duty of candour, and what needs to change is also discussed.

Peter finishes with the following statement, one that we wholeheartedly support:

Families, families like Connor’s in particular, make an amazing difference. But it shouldn’t be so hard for them. They shouldn’t have to make so much noise. So the system has to be more responsive, the system shouldn’t need to be dragged kicking and screaming to the door of taking action to improve safety. And that’s the kind of approach we would like to see in the future.

We sincerely hope that Southern Health, and others in a similar situation, are paying attention to Peter’s advice. It really is time to move to a culture of candour.

Day 86: Communication and being human #107days

Day 86 of #107days was adopted by Jenny Morris. Jenny blogged early on in the campaign and has also been interviewed by journalists for a number of pieces that relate to LB. Jenny’s expertise and knowledge is very valuable and today she offers a blog post with her thoughts and knowledge on communication.

I’m writing this because LB’s death and the campaign itself demonstrate two really important things: firstly that – at a time when so many aspects of social policy and social attitudes are going rapidly backwards – we need to hang onto what we have learnt in the past about the importance of everyone’s human rights and how to promote them; and secondly that if we really want to bring about positive change we have to do something fundamentally disruptive to existing systems.  If the ‘abject failure’ of the Winterbourne View transfer programme teaches us anything, it is that you can’t change outcomes unless you radically change the systems that are responsible for the problems in the first place.  I’ll come back to this point.

Day86_CommunicationPatch

The campaign is also making a quilt, made up of patches sent in by many different people.  The photo above is the patch I’ve sent and it sums up one important issue I want to highlight.

‘Communication is at the heart of being human’.  Sadly, some people will react to this statement by saying ‘But some people cant communicate and you’re therefore saying they aren’t human’.

Such an attitude goes along with a failure to recognise how people can and do communicate. Communication isn’t restricted to being able to speak, or write, or use sign language. Most importantly, communication isn’t incompatible with significant cognitive impairment or what people call ‘severe learning disabilities’.

Communication is about recognition of a message being conveyed – it is a two way relationship and we should be paying far more attention to the ‘recognition’part of the relationship.  Instead of saying ‘he can’t communicate’, we should be saying ‘I don’t understand how he communicates; I need to do more to understand, acquire more skills and knowledge, talk to people who know him better than I do’.

How many times have you heard someone say (as I heard only a few days ago):  ‘X has severe learning disabilities and can’t communicate at all. She loves swimming and lots of different kinds of music’? My heart sinks when I hear something like this and even more when the speaker then goes on to describe X’s ‘challenging behaviour’.

The statement is both a denial of the human right to communication and – ironically – at the same time it is an unintended recognition that X has in fact communicated very effectively about what makes her happy.

Attitudes like this go along with a failure to focus on ourselves as a recipient of communication, and instead place all the responsibility on the other person.  Such attitudes betray a failure to use and develop our own skills of observation and understanding; and a failure to use the skills and experience of those who know the person best and who understand how and what they communicate.

When I was doing research in the 1990s about the experiences of disabled children and young people living away from their families, it was very common to be told that a young person ‘doesn’t communicate at all’.[1]  We tried very hard to find people who had a different perspective on those whose experiences we wanted to explore, and if we were lucky we found people like the volunteer who came into a residential home once a week to spend time with one young man who we had been told didn’t have any way of communicating:

You have to wait a long time for him to react.  Although if he’s feeling negative about something he soon lets you know – he screams and shouts when he doesn’t like something but it can feel very unfocused because it feels so extreme. It feels as if it’s just coming from inside him but actually when you think about it, it’s usually something outside himself that he’s reacting to…because his negative reactions are so obvious it’s quite difficult to see his positive reactions but they’re there if you really pay attention.

Imagine if everyone ignored you when you spoke or consistently misunderstood what you said.  Imagine if people do things to you, for you, without paying any attention to what you say, to what you want, need or feel. Wouldn’t you ‘scream and shout’?

One of the things I try and do with most of the posts I write is to remind ourselves of what we’ve already learnt, and sometimes achieved, in the past. Many people who have contributed to the debate following both LB’s death and the ongoing failure of the Winterbourne Review Joint Improvement Programme have referred to the important work of those such as Jim Mansell and to, for example, the origins of Person Centred Planning. As Sara Ryan, LB’s mother, has written: ‘We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK’.

Just one of the key lessons from the past was encapsulated by Alison Wertheimer in a book she edited for the the King’s Fund about good practice in developing opportunities for people with learning difficulties.[2]Published in 1996, it included many examples of understanding what people were communicating when they exhibited ‘challenging behaviour’, and how changing environments and activities, addressing health needs, and providing support in different ways reduced and eliminated such difficulties.  Alison wrote:

Contrary to what usually happens, people with challenging behaviour need more rather than fewer choices, and more opportunities to control their lives in terms of what they do, where they spend time and who they are with.

We do actually have some mechanisms which would, as Alison recommended, give people who are locked away in ATUs etc more choices and more opportunities to control their lives. But these are not to be found in the kind of organisations described – in another publication from 20 years ago – as dominated by an Apollo culture[3]:

Apollo was the god of order and rules, and these organisations try to divide up the work into neat and distinct areas, where everyone has a clear defined role. Each role has a job description and a defined area of authority, with clear lines of accountability and hierarchical systems of decision-making.

These organisations cope well with stability but struggle to deal with major change. There is a danger that change will simply be incorporated into the existing structure and have little impact, if cultural and values issues are not explicitly addressed.

This publication was promoting person centred planning and challenging the way support is delivered, but the analysis can be applied in a wider context.  We have systems which result in people entering and remaining in institutional settings because housing isn’t available.  We have systems which create additional support needs because health needs are unrecognised and/or untreated. We have systems which take mechanisms, such as direct payments and personal budgets, intended to increase an individual’s choice and control but which instead apply an Apollo culture of order and rules which undermines self-determination – there are many examples of this but Mark Neary’s experiences are just one.

A clear lesson from the past is that in order to bring about real change the entire system has to be disrupted so that the focus is on creating more opportunities for people with learning disabilities to communicate their preferences and experiences. We need something like Chris Hatton’s proposal that control of all the money currently spent on keeping people in ATUs (an average cost of £4,500 per week!) should be given to a ‘ninja task force’ which puts people with learning disabilities and families in charge and works to ‘develop local, individual supports for people moving out of these services’. A key issue will be the availability of housing – though there are lots of good practice examples of how to provide real homes for people with learning difficulties instead of tying money up in institutional provision.

One thing that most of the reports which follow ‘scandals’ in health and social care systems illustrate is that services which deny the fundamental human right of communication create at best ‘challenging behaviour’ and at worst abuse and neglect that can end in death. And this applies as much to, for example, older people as it does to people with learning difficulties.

In order to bring about real change we have to reconstruct systems and services that have as their main motivating force the ability to recognise and act on what an individual communicates about their needs.  It is only by changing who has control over the available resources that we will have any hope of both protecting and promoting the human right of communication and of avoiding the wasteful expenditure on services which all too often fail those whose lives they are supposed to enhance.

[1] Morris, J. 1998. Still Missing? Vol 1: The experience of disabled children and young people living away from their families. The Who Cares? Trust.

[2] Wertheimer, A. ed. 1996. Changing Days: Developing new day opportunities with people who have learning difficulties. The King’s Fund.

[3] Sanderson, H. et al. 1997. People, Plans and Possibilities: Exploring person centred planning. Joseph Rowntree Foundation.

Day 76: Airing views #107days

Day 76 was adopted by Aisling and the team at Certitude who provide personalised support for people with learning disabilities, autism and mental health needs. It is worth acknowledging that when we started #107days a number of organisations rather tentatively got in touch.

Some decided not to publicly support the #JusticeforLB campaign, some decided to adopt a day but then cancelled (presumably when it became clear that we were not afraid of challenge or questioning the establishment) and some stayed the course. We are delighted that Certitude were one of those who adopted a day and have embraced the spirit of openness, transparency and learning that is so key to the #107days campaign.

Here’s why they are supporting #107days and #JusticeforLB:

At Certitude we were truly saddened to hear of Connor’s death and our thoughts are with his family and friends. As an organisation supporting people with learning disabilities and those who experience mental ill-health, we work to enable people to lead happy, rich lives. It is vitally important to us that it is the people we support who define what a good life is for them, and that they are able to express this. That Connor and his family felt marginalised, isolated and unsupported by the care provided makes organisations such as ourselves surely question the care we provide.

We were shocked to hear about the circumstances surrounding Connor’s death. That it was preventable has rightly made us look more closely at the support we provide: Are we truly doing the best we can for people who have epilepsy? How do we best support people, involving and learning from them and their families? How do we make sure we engage with all the services which provide support to people with epilepsy? As an organisation, we didn’t want to sit on our laurels. We wanted to use this terrible event as an opportunity to discuss whether we are providing the highest level of care and support to people.

This is what they’re doing with their adopted day:

On Tuesday 3rd June, we are holding an internal round table session to reflect on what lessons can be learnt from Connor’s death and to address how we best support people with epilepsy, balancing both safety and independence. Another focus of the discussion, which was sadly lacking in Connor’s case, is how we can ensure families are central to the support we are providing to their relative.

Day76Certitude

Chaired by myself (Aisling, their CEO), we will be sharing ideas on how can we ensure the support we give people with epilepsy is right for them, so we can we offer people the best possible care we can. We’ll be hearing from staff within Certitude working directly with people with epilepsy, as well as a family member who has a son with epilepsy. It will be an informal occasion where people will have the opportunity to air their views, whether positive or negative. I’m really hoping it will be an honest and productive discussion, where we will learn more about  challenges and issues , and explore ways we can increasingly work in partnership with people we support, their families and other professionals. We’ll also be showing the ‘Here comes the Sun’ film about Connor at the event and will be posting updates via Twitter during the discussion to continue to raise awareness of the #107days campaign.

At Certitude we strongly believe everyone has the right to a good life and receives the care and support they need to achieve it. We are wholeheartedly behind this campaign and hope that out of this tragic event there will be lessons learned far and wide to ensure it does not happen again.

We are confident that Certitude will have a great day, with a positive environment where negatives can be discussed as freely as positives and the focus is on what’s really important, supporting people to have a good life. We really hope that other people follow their example.

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 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.