Day 83: H&SA and BILD respond #107days

A number of the remaining #107days are shared days, and today is a powerful duo of H&SA and BILD. Alicia, from the Housing and Support Alliance (H&SA) and Ann, from British Institute of Learning Disability (BILD) both got in touch to adopt a day with a real urge to do something to make progress. We are delighted at the actions they have taken and feel confident that they will support real progress towards #JusticeforLB and all dudes.

So, first of all why did they want to get involved with supporting #107days and #JusticeforLB? Alicia, from Housing & Support Alliance had this to say:

H&SA is supporting #JusticeforLB firstly because Connor and his family only wanted something simple and straightforward, to get the help they needed and had a right to in difficult times, and it ended in the most unimaginable tragedy. We know that people with learning disabilities that have the most complicated needs can and do get good help, a good place to live and the support they need to live there. It is doable and affordable yet all over the country there are still many people with learning disabilities and families getting poor and mediocre support, being sent away from the people they love because there is no decent support locally and being needlessly hospitalised when all they need is for professionals to listen and respond. It is an outrage.

and Ann from BILD:

Like so many, we at BILD, the British Institute of Learning Disabilities, were dismayed to hear of the death of Connor Sparrowhawk, yet another young person dying whilst in ‘care’.

We were then shocked, again like many others, when the independent report made it clear that his death would likely not have happened had the right kind of support been in place in the unit where has was staying. We can only imagine the distress of his family and friends knowing that his death was preventable.

So many people with learning disabilities and autism have suffered from the lack of the kind of support they have every right to expect and should have. Too often organisations who are there to provide care and support fail to do so. It is people with learning disabilities and autism, and their families, who pay the greatest price.

Then we saw that the organisers of #107days wanted to harness the outrage that emerged in response to Connor’s death to fuel a campaign aimed at ensuring lasting changes and improvements are made. We wanted to join in.

As you can see they both wanted to help make real change. Alicia and her team are doing this:

To support the #107 days campaign H&SA are going to do something practical to help get people with learning disabilities out of institutions. In the latest Winterbourne View Concordat data it says that are 2358 patients living in ATUs that do not have a transfer date.  There are various reasons given for why most of those people do not have a transfer date. For 165 people it says that the reason they are still there is that there is not suitable housing provision locally.

H&SAs commitment to #107days is to try and find out what the local issues are and offer help to get housing for each of those people. We will do this by:

Day83_HSA

Also happening today is BILD’s action and you can follow it and participate on twitter using #BILDepilepsy.

To show our support we decided to organise a free event on 10 June, called, ‘Epilepsy – what matters?’, aimed at front line staff, families and anyone interested in epilepsy and people with learning disabilities and or autism. As well as the sessions taking place in Birmingham, we will also use the web, social media, and BILD’s many members, to help raise awareness of the issues around epilepsy support for young people with learning disabilities and or autism.

We are delighted to say that the event is full and there was a waiting list.

The topics the event will cover are:

  • Epilepsy misdiagnosis
  • Epilepsy and behaviour
  • Describing seizures
  • Epilepsy – Isn’t that just seizures?
  • Impact of epilepsy on learning and behaviour
  • The link between epilepsy and autism

We are very grateful to Pam Morris, Nurse consultant, and Emma Tingley, the National Services Programme Manager for Young Epilepsy, for being our speakers, and to Janet Cobb for helping to organise and promote the event.

Beyond 10 June, we will capture the available information on epilepsy in young people with learning disabilities and or autism and make sure this is available on the BILD website for visitors and those looking for support.

We would like to wish the #107 Days Campaign every success.

You can check out the programme for today below, and join in on twitter. We’d like to thank the Housing & Support Alliance and the British Institute of Learning Disabilities for their actions.

BILD_Day83

Day 47: Indignation and initiative vs ‘institutional inertia’ #107days

We are now on Day 47 of #107days, rapidly approaching our half way point, and we are delighted to share with you a post written by Saba Salman, who adopted today. Saba wrote the initial piece on LB’s death and #JusticeforLB, published in the Guardian on Day 0. It has been phenomenally heartening to see an independent person’s take on our campaign, but we’ll leave you to judge that for yourselves:

Imagine if you had £3,500 a week to run a campaign, consider the awareness you could raise with even a tenth of that.

Now multiply £3,500 – the average weekly cost of a place at an assessment and treatment unit (ATU) – by 3,250 – the number of learning disabled people in such units. That’s an indicator of the costs involved in using controversial Winterbourne View-style settings.

Just over a year ago, 18-year-old Connor Sparrowhawk, aka Laughing Boy or LB, was admitted to a Southern Health NHS Trust ATU where he died an avoidable death 107 days later.

In contrast to the vast amounts spent by commissioners on places like the one where LB died, the #JusticeforLB campaign sparked by his death is ‘funded’ solely by goodwill. No PR team crafting on-message missives, no policy wonks collating information, no consultants advising on publicity.

#107days of action began on Wednesday 19 March, a year to the day Connor went into Slade House, and continues until the first anniversary of his death, Friday 4 July 2014. Half the aim – and I’ll come to the other half at the end of this post – is to “inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes”. The goal is to capture the “energy, support and outrage” ignited by LB’s death.

Day47

This post, around halfway through #107days and written from the perspective of having reported on #JusticeforLB at the start of the campaign, looks at what’s been achieved so far.

I’m not describing the “abject failure” of progress to rid social care of Winterbourne-style settings – care minister Norman Lamb’s words – the sort of apologies for care where compassion is often as absent as any actual assessment or treatment. Nor do I write about the errors at Southern (you can read here about the enforcement action from health regulators after a string of failures). I want to explain, from my interested observer’s standpoint, the impact of #107days and what might set it apart from other awareness drives.

It’s a timely moment to do this. It is now three years since Winterbourne, less than a week after Panorama yet again highlighted abuse and neglect in care homes and a few days since new information on the use of restraint and medication for people in units like LB’s. The campaign reflects not only the importance of #JusticeforLB, but also an unmet need to finally change attitudes towards vulnerable people (and it’s not as if we don’t know what “good care” looks like).

There is a palpable sense that the #107days campaign is different. Talking to journalists, families, activists, academics, bloggers and social care providers, the word “campaign” doesn’t adequately define #107days. It’s an, organic, evolving movement for change, a collaborative wave of effort involving a remarkably diverse range of folk including families, carers, people with learning disabilities, advocates, academics and learning disability nurses.

It’s worth noting the campaign’s global reach. LB’s bus postcard has been pictured all over the UK and as far away as Canada, America, Ireland, France, Majorca and São Paulo. LB has touched a bus driver in Vancouver and brownies in New Zealand.

Because of the blog run by Connor’s mother Sara Ryan (launched long before his death), LB and his family are not mere statistics in a report or anonymised case study “victims” in yet another care scandal. Instead we have Connor: a son, brother, nephew, friend, schoolmate, neighbour – and much more – deprived of his potential. We forget neither his face and personality nor the honest grief of a family facing “a black hole of unspeakable and immeasurable and incomprehensible pain”.

Yet while anger and angst has sparked and continues to fan #107days, the overwhelming atmosphere is optimistic. There is the sense that outrage, can should and will force action (and it’s worth mentioning, as #JusticeforLB supporters have stressed, exposing bad care begs a focus on good care – lest we forget and tar all professional carers with the same apathetic brush).

Both in its irreverent attitude and wide-ranging activity, this is no orthodox campaign. It is human and accessible because of its eclectic and inclusive nature (see, for example, Change People’s easy read version of the report into Connor’s death). And at the heart of the campaign lie concrete demands. In its bottom-up, social media-driven, grassroots approach and dogged determination, #107days has a hint of the Spartacus campaign against welfare cuts (Spartacus activist Bendy Girl is supporting #JusticeforLB through her work with the newly formed People First England).

As for impact so far, daily blogposts have attracted over 25,000 hits with visitors from 63 countries. There have been 7,000 or so tweets (which pre-date #107days) 1,380 followers, the #justiceforLB hashtag has been used more than 3,560 times and the #107days hashtag more than 2,000 times in the last month (thanks to George Julian for the number crunching). So far, the total amount raised for Connor’s family’s legal bills is around £10,000.

I can’t list each #107day but suffice it to say that the exhaustive activities and analysis so far include creative and sporting achievements highlighting the campaign as well as education-based events (or as Sara described progress on only Day 6 of #107: “Tiny, big, colourful, grey, staid, chunky, smooth, uncomfortable, funny, powerful, mundane, everyday, extraordinary, awkward, shocking, fun, definitely not fun, political, politically incorrect, simple, random, harrowing, personal, in your face, committed, joyful, loud, almost forgettable, colourful and whatever events”).

Along with blogs, beach art and buses in Connor’s name, there’s an LB truck, the tale of two villages’ awareness-raising, a hair-raising homage, autobiographical posts about autism, siblings’ stories, sporting activities, and lectures. And patchwork, postcards, pencil cases, paddling (by a 15-year-old rower) and petition-style letters (open to signatures).

It’s worth noting that while learning disability should be but isn’t a mainstream media issue, there have been pieces in the Guardian and Daily Telegraph plus important coverage on Radio 4 , BBC Oxford and in the specialist pressBBC Radio Oxford‘s Phil Gayle and team have followed developments relentlessly and Sting Radio produced an uplifting show on the first day of the campaign. While some of this coverage pre-dates #107days, it reflects how media attention has been captured solely thanks to the efforts of Connor’s family and supporters (links to other coverage are on Sara’s blog).

As for reaching the key figures who could help make the changes #107days wants, the campaign has had contact with health secretary Jeremy Hunt, care minister Norman Lamb, chief inspector of adult social care Andrea Sutcliffe and Winterbourne improvement programme director Bill Mumford, care provider organisations and staff.

Earlier, I described the first half of #107days’ aims to “inspire, collate and share positive actions” and capture the “energy, support and outrage” ignited by LB’s death. Based on the efforts and impact so far, and the campaign is clearly on track.

But the remaining target – to “ensure that lasting changes and improvements are made” – is more elusive, largely because it lies outside the responsibility and remit of members of the #107days campaign.

Contrast the collective nerve, verve, indignation and initiative of the last 46 days to what Norman Lamb calls the historic “institutional inertia” of NHS and local government commissioners, a cultural apathy undermining plans to move more people out of Winterbourne-style units.

The existence and continued use of ATUs might be a challenging and seemingly intractable problem. But that’s not good enough a reason for commissioners – and those who run and govern such places – to ignore the problem. There are good intentions coming from some in authority; people just need to put their collective muscles where their mouths are. Doing that sometime during the remaining 60 days of the campaign for Connor seems like the right thing to do.

Day 40: Musings from the Magic Roundabout #107days

We were delighted when Ermintrude offered to write a blog post for #107days. Day 40 shares her thoughts and musings, and we’ve named the post in honour of her pen name, but also in acknowledgement of the constant sense of being stuck on a merry go round in dealings with Southern Health.

merrygoround

This is what Ermintrude had to say in support of #JusticeforLB:

I wanted to write something to remember and honour LB, his family and people who are in similar situations now. I wanted to rage against systems that allowed this to happen but as I’ve read people’s contributions, I realise I can’t add more honesty than those who have experienced the utter despair and despicable treatment in the hands of health and social care professionals.  So I am just pondering some memories, fitting them together and thinking about what I can do to promote better care and better systems for people who have learning disabilities and for all people who are subject to the vagaries of a disjointed and unempathetic system.  Here is my modest contribution.

When I was at school, we had weekly trips to a local residential home for people with learning disabilities. It was billed as ‘community service’. We could go instead of playing hockey. My aim wasn’t very noble when I volunteered, I have to say. I wasn’t very good at sports. Looking back though, at some of those afternoons, I remember how we didn’t really see an us/them and it became more than a way to avoid hockey. We laughed, we joked, we played silly board games, chatted about music and television and school. It became a fun way to spend the afternoons because we were simply hanging out with people who laughed at our jokes and who we enjoyed being around.

Looking back over the thirty years since then, I wonder whether this was really anything revolutionary we were doing. Or if we just need to stop looking for answers and try and find some of the solutions we have already found but just do them better.  I went to university and dabbled in a little voluntary work with older people. I joined one of those countless ‘societies’ which are on offer which did little jobs around the house for older, isolated people. I pity the poor women (it was mostly women I happened to visit) who had me wallpapering their front rooms for them but in my defence, I think, in return, we always chatted for far longer than we worked. Big society. Right.

And then past university, which is where I’m going to settle a while, I picked up on the voluntary work with CSV and went to spend a year in a residential home (with staff accommodation attached as it was in the middle of nowhere) for adults with learning disabilities and epilepsy.

It is here that I’m going to settle a while because it was where I learnt a lot about epilepsy, learning disabilities and the relationships between the two. Everyone who lived in the home had epilepsy. We were given core training in managing situations, particularly when people had seizures and as a new volunteer, while I was supposed to be doing the ‘fun’ stuff in addition to the staff – like taking people out in the local area, running games groups and discussion groups in the evenings and generally just wandering around ‘being sociable’, a big part of my morning routine was supervising baths.

I remember feeling quite awkward initially about having to watch people having baths. Of course, we did it as subtlely as we could. We had privacy curtains surround the bath with a small gap to observe and often I (as all the staff would – this wasn’t something different I did) we would chatter away to people as they sat in the bath, just making sure there were no long silences or that I didn’t monopolise the conversation too much. Always, we listened out for any splashes. I did have to pull the plug out a few times when people had seizures in the bath (that was the first thing we were to do). And thinking of a man, who drowned in an NHS run hospital where the care and supervision should have been there, I often thought back to those days when we would all be taught, from the very junior people like me how to manage seizures in baths, it makes me angry. That was 20 years ago.

I moved on after that job to work in learning disabilities services for a number of years until I qualified as a social worker and switched to work with older adults but a part of my heart stayed there.

So how have we got to a situation where services exist and an organisation exists which provides them in an NHS healthcare setting where the minimum standards were not met. We aren’t talking good quality care here, we are talking about providing dangerous and neglectful care. Care which contributes to the death of people, to the death of Connor.

There are a number of things which can be put into the basket.

Firstly, poor organisations delivering poor services. This is no excuse. This is not about ‘modern’ or ‘not modern’ ways. I was doing this in 1993. I’m sure there were many problems with the places I worked in but they provided far better care, 20 years ago, than Southern Health manages now. And the CEO talks of ‘not working in a modern way’. I wonder how often she has sat outside a bathroom, listening for someone in a bath and listened if they had any seizure that she would have to act on. I wonder. I wonder how often, and maybe I’m misjudging her, she has sat with the people who receive her services, in the settings and environments which have failed to provide the basics like safe seclusion facilities, like functioning defibrillators and listened. Truly listened.  While there are poor services and these services are allowed to continue to exist without censure, we can’t claim that we have a health service to be proud of. I worked in the NHS for many years. I am proud of the work I did. I’ve come across many many wonderful doctors and nurses but as an organisation, we have to be able to criticise parts without being made to feel we are criticising all. Some parts don’t function.

Secondly, and this is linked, poor oversight and lazy commissioning. Commissioners have a responsibility to check the quality of the services which they are paying for and to hold providers to account. They hold the purse-strings and have to be assured that they are happy with what is being provided. This is not about ‘avoiding scandals’ although I fear sometimes it might be. It is about seeking the best. There seems to be a lack of aspiration around some services for people with learning disabilities and my feeling is that this gap is particularly evident in health-based settings. We can talk Winterbourne endlessly and good work may be being done but we need to see more action and less rhetoric. The commissioning and commissioners are lazy because they don’t scrutinise or challenge.

Thirdly, there is the societal assumptions and expectations for people with learning disabilities. We talk about the watershed of Winterbourne but Connor died in the post-Winterbourne landscape. We talk about people moving nearer home as if that is a cure-all but poor care happens near home too. And not everyone has a home to go back to. I remember some work I did once with a man with profound learning disabilities who had no family. We can’t make assumptions about people having families who will advocate and fight for them. As a society we need to fight as strongly as those families might for those without. We fail miserably here. The expectations and assumptions are set low because there isn’t much thought or consideration for difference. Some organisations say the right words but there are often lazy assumptions made.

So is there scope for change?

I hope so. We have developed a health and social care system which is routed in jargon and exclusion. I worked in health and social care for 20+ years and it confuses me. How can we expect others to understand when we can’t ourselves. We have different funding streams and different funding levels for different things. Some pots are mixed up and some are centrally commissioned, some locally commissioned, some contracted out by provider services. Some are charged and some aren’t. What a mess we have created.  Instead of transformation being what it actually means, it has been tacking on poor systems (such as the extra complicated way that personal budgets have been rolled out) onto poor systems. Where is the complete redesign? The NHS moans and groans about too many changes. No, it’s too many of the wrong kinds of changes. There needs to be change. There needs to be integration but there need to be sensible people driving it. People who experience the services as recipients – not those cozied up to each other in Whitehall and local government/CCG silos chatting to the same people they have done for years and exchanging thoughts over golf in Surrey.

My hope is that we can drive these changes. For LB, and for all who need to have their voices amplified so that things can move on. Because they need to.

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.