Week 10: 1 in 4 MPs contacted re #LBBill, still 75% to go #107days

Wow, what a weekend of #bankholidayactivism. Ever since the #JusticeforLB campaign evolved/emerged/was born (still not sure which of these is most true) we’ve been blown away by the responsiveness of people. This weekend proved no exception and we’re delighted to now share that slightly over 25% of all MPs in Westminster have been contacted about the #LBBill.

Seriously, that’s 1 in 4 who will know about LB, who will hear about his entirely preventable death, and who hopefully will read up on the #LBBill and lend their support to it. The responses from MPs on twitter and email has been overwhelmingly positive, where they’ve had a chance to engage, and let’s be honest MPs are allowed time off too and given it was a bank holiday and the start of half term for most people, we really didn’t expect to have had pretty much any response.

LBBillContacted_25%MPs

We’re not getting complacent though. As wonderful as it is to see that all MPs in Norfolk and Devon have heard about the #LBBill there are still whole swathes of white on our map where people don’t yet know.

So this is a quick thank you, a mini celebration and a call for further action.

If you are reading this, and you care about disabled people, please take action to contact your own MP and let others know about the Bill and what it proposes. You can read Sara’s post from yesterday for more on what difference the LBBill would have made to LB – short answer is he would probably still be alive today, playing with his footy guys and chatting away to Chunky Stan.

Screenshot 2014-04-23 05.56.04

We need to make sure no other family suffer the same loss that LB’s have, that no more disabled people are denied what are essentially very basic human rights. So please take action, we need to give the #LBBill every chance to be heard in Parliament.

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 64: A jewel of a future #107days

Day 64 was adopted by Zoe, who got in touch very early on in the #107days campaign to adopt today. Here’s why:

I first found out about LB and his family when Mark Neary posted on facebook with the awful news about Connor’s death. Like other people, I was outraged and incredulous that this type of abject neglect could happen in a unit that was supposed to be staffed by people with expertise in helping young people like Connor who are at a crisis point in their lives.

Reading Connor and his family’s backstory and then following what has happened and is still happening in the aftermath of Connor’s preventable death, I’ve been awakened to the horrors of ATUs and moved to join the #JusticeforLB and #107days campaigns in order to do what I can to help.

Our school, Bright Futures has an active PTA called ‘Friends of Bright Futures School’. We run regular events and had scheduled a jewellery party to raise funds for FBFS. When the #107days campaign was announced, we decided instead to use to the event to raise money towards the costs of legal representation at Connor’s inquest. We also hope to raise awareness of Connor’s preventable death and the subsequent dehumanising treatment of his family by Southern Heath Trust by getting some coverage in our local paper.

I’ve written some thoughts on what I think are the components of a quality service for young people with developmental difficulties who are at a crisis point in their lives. Many others have made similar suggestions. There have been conferences, academic papers, TV documentaries and public inquiries about what has gone wrong in the ATU system and more widely in services for people with learning difficulties… but on a weekly basis we are still hearing of more young people and their families who have been subjected to neglect, bad practice and abuse.

It is heartening to see the groundswell of grassroots support for #JusticeforLB and it is my fervent hope that we can harness our ‘crowd-rage’ to bring about the change that is needed.

Day64_School

Bright Futures where the jewellery party will be held – more photos later.

Day 19: ATUs – a tweet a day #107days

Day 19 features Sam who has very generously agreed to share her learning across #107days. She is doing this through a tweet a day, and so far it’s been fascinating what she has managed to share in just 140 characters a day. As with all contributors to #107days we asked Sam why #JusticeforLB mattered to her and this is what she said:

I and Doreen Kelly set up Beyond Limits nearly three years ago in conjunction with the then Plymouth PCT (now NEW Devon CCG) to set up what I now come to realise was an inspiration project to plan with the 20 people with learning disabilities and their families who had been cruelly placed in Assessment and Treatment Units across the UK, to bring them home where they wanted to be. Inspirational because the commissioners were taking a leap of faith, admitting they had got things wrong and would work in real partnership with us as a Provider, and families and people, for probably one of the first times.

This was not the first experience I have had of working with Assessment and Treatment Units having worked for the previous five years as part of the Change Team brought in to close Budock Hospital in Cornwall and transform their services and then managing for Bournemouth & Poole PCT the closure of their NHS Units. These experiences set a fire in my soul to help people get out and get a life, but the process has been long, hard and frustrating with fighting all the way against the blocks, crap systems and sheer discrimination that exist in the very services that are meant to be helping these people.

We have worked hard to set up tailor made services for people and they are now getting lives and what is more important lives that involve their families again. Every small achievement and smile that I see on a person or family member’s face makes it all worth it. A knock on effect is that we also see that the teams that support people in the personalised way we work also get great rewards from the close relationships they develop with people and they grow in confidence about what can be achieved meaning we are growing a small army of freedom fighters down here in the South West!

However, it was with a heavy heart and yet more tears that I came across Sara’s tweets and blogs in November of last year to be reminded of the scale of the problem and the devastating outcomes that will occur for as long as Assessment and Treatment Units still exist. The death of a loved one must be excruciating in any circumstance, but the needless and wasted life of Connor Sparrowhawk is a national disgrace and I could not but get involved in the campaign. The passion with which Sara has driven the campaign reminded me so much of all the families we work with whose resilience, against all the odds, has been the major contributor to getting people home. My small contribution to the campaign has been to tweet everyday on the things I have learned from the work I have done over the last eight years with Assessment and Treatment Units.

Beyond Limits is a small Organisation and that is how we will stay because to us small is beautiful and small means we can be there for each and every person we support, but the challenge is how to help others to do the same across the UK so when we get heartbreaking calls from families elsewhere we can confidently sign post to other organisations that share our values and will make things happen.

Finally, and just as important and crucial to a new culture that I hope is developing, is stopping the tap that drips people into these units. If the tap is turned off by commissioners Assessment and Treatment Units will not survive. Cultural change will then happen and as long as people think creatively and do not set up local Institutions instead. We then have a fighting chance to stop what happened to Connor ever happening again.

Day 10: Hand in Hands with AL #107days

One of the aims of #107days was to raise awareness about #JusticeforLB and all young dudes and dudettes, about the reality that they face and some of the alternatives that should ideally be available. To some extent what happened to LB was due to the lack of appropriate provision available to him and his family as he approached adulthood. A number of people have got in touch to adopt a day for #107days to share some of the work they are doing to improve things. Day 10 was adopted by Michelle Dudderidge, this is what she had to say about why she got involved:

You can see from the images of LB he was a good-looking, happy young dude. He was tragically failed by the people who should have fully supported him and kept him safe from harm. #JusticeforLB is important to me as LB’s death needs to be acknowledged and those responsible need to be punished to ensure this doesn’t happen to anyone else!

This is Michelle’s story:

In 2011, following Winterbourne View, I established a supported living service, in Hertfordshire, Hand in Hands, to support vulnerable adults with Learning Disabilities and behaviours that challenge, to live independently in their own homes.

I always wanted the organisation to stay small, to enable us to make a difference to the lives of a few individuals and not compromise the quality of the support offered and ensure I remained in control. We now have three services in North Hertfordshire, each can be home to four individuals. As we have only recently opened the second and third services we currently have six vacancies to fill across both.

My aim was, and still is, to ensure those accessing our services have the quality of life that we ourselves would wish for, in a society free from discrimination.

…and this is AL’s story, Hand in Hands first individual:

AL Before

Our journey with AL began in November 2011, 4 days after his 18th birthday. He was living at home with parents who had seen a change in behaviours since he had left Residential School and were finding him increasingly difficult to manage.

In December 2011 AL was admitted, informally, to an Assessment and Treatment unit in Buckinghamshire. AL was in the ATU for 97 days, during which time we undertook a transition period to prepare him to be moved into supported living in March 2012.

Although AL’s Psychiatric Consultant was, and still is, very supportive of what we wanted to achieve for AL, the care staff (many of whom were agency workers), were not as optimistic. The staff told us as AL is non-verbal, “he will never be able to communicate effectively”. AL now uses picture cards and basic Makaton to ensure his needs and wishes are known.

The staff told us AL would not be able to live safely in the community, as he “required far too much PRN medication to manage his unpredictable behaviours“. AL has not had any PRN medication since July 2012. He continues to be managed on a 2:1 staffing ratio, as has been the case since day one, and he is also fully supported through a robust Behaviour Management Plan.

The staff told us he must live alone as he was “far too dangerous to live with others“. AL is now living quite happily with 3 others, and this has been the case since August 2012. They all understand each other’s personal space and are respectful of AL who ‘moved in first’.

The staff told us he would never “be able to go into the community unless he was in a car“. AL will go for walks with staff (on his terms). He is always more than happy to take staff by the hand and lead them to the ice-cream van where he will wait his turn before touching the picture of what he would like.

All of these things are huge achievements for AL in the development of his social and daily living skills and there is no way he would have progressed if he was still in the ATU. AL will always be unpredictable due to his diagnosis, however, I must say how proud I am of the staff team at Hand in Hands who continue to support him to further develop everyday.

AL After

The two photos in this post are before and after pictures of AL.

Look at the difference in his eyes, the unkempt, lost and scared man has gone and he is now a happy young dude who is being supported fully to make the most of his life as an equal in society.

Day 5: 107 stories from an assessment and treatment unit #107days

Yesterday we featured WiseGrannie who is a relatively new online voice to the discussions around care and support for people with learning disabilities. Today, we feature Mark Neary and his son Steven, both experts by (bitter/shameful/appalling) experience who have been at the front of the queue when it comes to generously sharing their knowledge and wisdom with others.

Steven + Mark Neary

Mark has a very personal reason for getting involved with #107days and #JusticeforLB:

Steven went away for 3 days respite on 30th December 2009. The following day I stupidly agreed to him being moved to an assessment and treatment unit. 3 days turned into 2 weeks and it finally took 358 days for him to be returned home. In his time in the hellhole, he was unlawfully deprived his Article 5 & Article 8 human rights. The scars are still there for him and me.

I’d like to keep assessment and treatment units in the news until they’re gone for good.

Mark has shared their experience in book form, if you’d like to read more then Get Steven Home and There’s Always Something or Other with Mr Neary provides the background. The titles alone speak volumes. For #107days Mark is sharing 107 stories from Steven’s time in an assessment and treatment unit. He started slightly ahead of us and so far has shared ten stories including Shoes and Beards and Bryan Ferry and Challenging Behaviour. I promise you will laugh and cry and shake your head in disbelief, it’s powerful stuff.

Just last week Mark has also shared two post on his personal blog that bear striking resemblance to LB’s family’s experience to date: A Smile, A Shrug, A Sob and A Stab and the follow up A Smile, A Shrug, A Sob and A Security Alert. It seems there is a pattern to what can be expected, suffice to say that sense prevailed in the end for Mark and Steven, and we take strength from them, and won’t be going anywhere until things change, permanently, for young dudes and dudettes, and until we have some Justice for LB.

We’re very grateful to Mark for sharing his and Steven’s experience with us through #107days. You can follow him on twitter here @MarkNeary1 and you can wish him a Happy Birthday for today too!!