Tag Archives: disability

Why is it OK for politicians to ignore people with learning disabilities?

More than one million people with learning disabilities are eligible to vote – so why are they ignored by politicians?

My interview with Gary Bourlet in today’s Guardian explains how the veteran disability campaigner wants to give people like himself, with learning disabilities, a greater voice and presence so they feature in places other than “secret footage on Panorama”, referring to Winterbourne View, where the abuse of patients with learning disabilities was exposed by the BBC in 2011. To this end, he has set up People First England, to encourage adults with learning disabilities, rather than care professionals, to participate in politics and appear on TV and radio discussing stories that affect them.

“We want people speaking for themselves about issues that concern them, rather than the professionals,” he says. “We want greater powers to be seen, to vote, to be included, have the same opportunities in social life, education and employment as everyone else.” Bourlet, 55, has launched the user-led charity with disability rights activist Kaliya Franklin.

You can read the rest of the piece here while my post from yesterday adds some more context to Bourlet’s message.

Investigation into bullying at special school sparks questions for Winterbourne improvement scheme

Fresh questions are being asked about the government’s beleaguered post-Winterbourne drive to improve care for learning disabled people. An investigation is underway into “bullying accusations” at a special school run by a charity whose chief executive is trying to reinvigorate the flagging £2.86m government improvement scheme.

Bill Mumford, chief executive of MacIntyre which runs Womaston School and Children’s Home in Wales, offered to stand down as director of the Winterbourne improvement programme after allegations of mistreatment at Womaston. The government programme launched after the abuse of learning disabled patients at the Winterbourne View privately run unit in south Gloucestershire, abuse that was exposed by BBC’s Panorama in 2011. It aims to move individuals out of institutional, large-scale, long-stay units and into community-based accommodation.

Concerns about the behaviour of some staff towards children at MacIntyre’s specialist residential service were reported by a member of staff to the school principal in March and police and social services are investigating the claims. The school, home to students aged aged 10-19 with autism, complex behavioural needs and learning disabilities, will close in July with the young people moved to alternative placements. Staff have been suspended, other staff drafted in and, says MacIntyre in a statement, “the alleged behaviours are not occurring in the service now”.

The investigation into Womaston is expected to last several months and there are no more details about what the allegations involve. A BBC online story refers to “physical abuse”, a statement from MacIntyre describes “concerns” about the “behaviour of some other staff members” while a personal statement from Mumford mentions “a small group of my staff…suspended following accusations of bullying”.

The incident has sparked fresh criticism of the Winterbourne programme run jointly by the Local Government Association and NHS England. It aimed to move everyone out of such assessment and treatment units by 1 June 2014 but after little progress (3,250 people with learning disabilities and autism are still in private or NHS-run settings like Winterbourne View), its previous heads left and Mumford took over in January, on secondment from MacIntyre. New NHS figures show only 256 out of 2,615 in-patitents with learning disabilities or autism have dates for transfer into community settings and more are being admitted to NHS settings than moved out.

The death of Connor Sparrowhawk recently reignited debate about the use of such units that cost around £3,500 per person per week and leave people at serious risk of neglect and abuse.

Mumford has issued a personal statement “re the investigation at MacIntyre and my continuing role in support of the Winterbourne prog” (that’s a statement taken from Twitter). In it, he accepts concerns that while he is charged with a national role to improve the care and support of learning disabled people, employees of the organisation he presides over were carrying out exactly kind of behaviour he’s trying to stamp out. He also addresses the fact the drive has been less than successful.

He says in his statement (the square brackets are mine): “It is a very real concern to me and the [Winterbourne improvement programme] partners that the trauma experienced by individuals and families at Winterbourne View and elsewhere should not be exacerbated by the thought that the person responsible for the programme [is] being tainted with serious problems in his own organisation. Indeed it is the unacceptable stories of individuals and families that motivate and challenge us all to step up and do better. Therefore my second decision was to contact the Joint Improvement Partners, including personal phone calls to the representatives of people with learning disabilities and families, to inform them of the situation and offered to voluntarily step down. This couldn’t come at a worse time for the programme partners as it is well know[n] that complexity of achieving the original concordat commitments has been a struggle.”

The MacIntyre chief executive adds that the charity took immediate action: “There has been no cover up, no prior issues of this nature have been raised before and the families and placing local authorities and alerting member of staff are all completely satisfied with MacIntyre’s actions to date. Therefore MacIntyre is dealing with a very serious situation exactly as they should – it is an example of how things should happen and maybe this is an important lesson for the programme to share.”

While the investigation by Powys social services and police continues, Mumford says he is “not only restricted about what I can say but actually what I know. However as soon as it is completed I will share what we have learnt regardless of how painful that might be.”

Discussion (so far mainly on social media) involves support for Mumford and the Winterbourne programme’s aims as well as criticism about why a statement was only made public this morning and why there was not more immediate public transparency after the claims were lodged with the relevant authorities.

*This post was updated this evening in an attempt to clarify “bullying accusations” and add figures and links relating to the number of in-patients with learning disabilities.

Raana, a real bread maker

Today is the last day of Real Bread Maker Week, not too high profile as far as awareness weeks go, but it seemed an opportune moment to share a one minute video of the best real bread maker I know – my sister Raana.

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Raana works in the Lantern Bakery at the Camphill community in Hampshire where she lives. You can see and hear her and the other bakers in action in this audio slideshow I did for the Guardian. The video was put together last year as a little token of sunshine for family and friends after we did the slideshow, but following in-depth research and consultation (I asked Raana and our parents), we decided it would be fun to post it here.

Spliced together with not much time (but a lot of warmth and a fair sprinkling of my sister’s sense of humour), we hope it leaves you with at least one of four things:
1. A clear impression that my talents do not lie in shooting video
2. An understanding that my sister – and her fellow bakers – are damn good at what they do (and why shouldn’t they be?)
3. A smile
4. A hunger for (organic, wholesome, additive-free, made with skill) freshly baked bread

The bread maker week that ends today, run by the food and farming charity Sustain, champions “real” bakers’ “rightful place at the hearts of our local communities” and encourages people bake or buy real bread from local, independent bakeries. Just like my sister’s (she bakes a mean chocolate brownie too; if you’re passing by Ringwood, go taste…).

Charity helpline supports abuse victims with learning disabilities

If Simon Tovey gets anxious before using the bathroom, you might assume his panic is linked to his learning disability. Maybe the public convenience is unfamiliar?

Yet Tovey’s fear is the result of the abuse he suffered at Winterbourne View assessment and treatment unit. He featured in the 2011 Panorama expose of the privately run unit near Bristol where he was kicked, punched, verbally tormented – and threatened with having his head put down the toilet.

Tovey’s mother, Ann Earley, says of her son, 40: “The Simon that returned to us was not the same one who left. He was profoundly affected and unable to put into words how he felt. He has a long-term fear of toilets – that’s just one small thing. The other impact is incalculable, like his fear about what’s going to happen next.”

Three years on from the Winterborne View scandal, the effect on residents has been huge – but a specialist helpline offers support for them and their families. Read the rest of my piece on the work of the charity Respond on the Guardian’s social care network.

Ann Earley and her son Simon, who was abused at Winterbourne View specialist unit in 2011
Ann Earley and her son Simon, who was abused at Winterbourne View specialist unit in 2011

Indignation and initiative vs institutional inertia

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This is a post that originally appeared on the #107days of action campaign site, raising awareness about the death of Connor Sparrowhawk who died a preventable death in specialist NHS unit last year:

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.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 press. BBC 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.

Development and disability: new report urges action

Hazrat Bilal and family, Bangladesh (pic: Sightsavers)
Hazrat Bilal and family, Bangladesh (pic: Sightsavers)

Hazrat Bilal from Narshingdi, Bangladesh, has been blind since birth, but it was only in 2008 at the age of 33, with support from Bangladeshi charity Action for Blind Children, that he was officially registered as permanently disabled. That led to more support from services for the visually impaired; Hazrat got to know other people with sight problems and began to gain confidence.

The 39-year-old now runs his own grocery shop and has helped form a self-help group. It was only after help from the local charity, a partner of international charity Sightsavers, that his life was transformed but if more international development and aid plans were disability-inclusive, there would be many more stories like Hazrat’s.

One billion people all over the world – 15 per cent of the population – have a disability, according to the World Health Organisation. Of that total, 80 per cent live in developing countries.

Despite the fact that one of the eight Millennium Development Goals that world leaders agreed in 2000 was that every child should have a full primary education by 2015, more than a third of the 57 million children worldwide missing out on school have disabilities (see this stunning picture story about blind schoolchildren in Uganda). It seems incredible but disability was not included in the Millennium Development Goals.

Disabilities contribute to global economic, political and social development but it is well documented that development programmes overlook disability issues. That may change if a new report by the International Development Select Committee on disability and development has any impact. Today’s report urges the Department for International Development (DFID) to strengthen its work to include people with disabilities and calls for a focus on disability as a development issue.

The report’s recommendations echoes some of the actions outlined in international charity Sightsavers’ Put Us in the Picture campaign. Launched last year, the campaign calls on policymakers and politicians to include disabled people in international aid and development plans, highlighting the links between disability and poverty.

Specifically, the campaign says the government must ensure people with disabilities participate in, and benefit from, international development programmes and must talk, listen to and work with people with disabilities and their families. It also argues that DFID staff should be trained to include people with disabilities in their work.

You can support the Put Us in the Picture campaign here or follow it on Twitter with the hashtag #InThePicture

In style and inclusive

Natalie Birch, left, and Jazz Nightingale at a Find My Style session (pic: Flamingo Foundation)
Natalie Birch, left, and Jazz Nightingale at a Find My Style session (pic: Flamingo Foundation)

Disability and dress sense aren’t mutually exclusive. Take the first-ever New York fashion week model to work the runway in a wheelchair. It’s an obvious (and frequently made) point but, as wheelchair-using model Danielle Sheypuk said during her first New York Fashion week, people with disabilities are consumers of fashion.

There’s already plenty of good debate out there about the fashion industry’s attitudes to disability (see also the BBC’s Britain’s Missing Top Model) but alongside the more high profile attempts at awareness, it’s important to see some smaller, community-based projects aiming for change from the ground up.

A charity-led project recently launched in Hertfordshire, hoping to change preconceptions about fashion and disability and encourage young adults with physical and/or learning disabilities to be more confident with their style.

The Flamingo Foundation charity has launched Find My Style with Hannah Jean, a fashion stylist and image consultant.

Stevenage teenager Jazz Nightingale took part in the first fashion styling session recently. Jazz, who tried a session at Oaklands College in St Albans. The 19-year-old says “I was interested in the session because I like to follow fashion just like other young people. It helps me express myself and my favourites are patterns, sparkly clothes and scarves….The session with Hannah helped me think about what sort of styles are on trend at the moment and what would suit me. Learning how you could alter your clothes to suit your own needs was great too. It really helped boost my self-confidence.”

Natalie Birch, also 19, has a learning disability and while she admits she is “happiest in hoodies, t-shirts, trainers and joggers”, she says the styling session gave her fresh ideas about style. She ends, “The fashion industry could do more to support disabled people by using more disabled models in magazines.”

The project was funded by London bar Embargo 59 with proceeds from a fundraising cocktail evening during London Fashion Week in February.

* Read more about the sessions here or contact info@flamingofoundation.org to run a session for a group of young adults

Papers, policies, progress and people

While researching a recent piece about the preventable death of teenager Connor Sparrowhawk in a specialist NHS unit, I re-read a lot of old – very good and still very relevant – policy and reports.

As the piece yesterday stated, an independent report found 18-year-old Connor’s death at a Southern Health NHS Foundation Trust assessment and treatment unit was avoidable – reigniting criticism of care for people with learning disabilities.

But for more than 20 years – from 1993’s influential Mansell Report to its 2007 revised version, to the 2001 report Valuing People and the 2006 Our Health, Our Care, Our Say white paper, it’s been clear what “good looks like”.

I started this blog specifically to look at good projects, people and places, mostly related to social care. I spend some of my time finding out and writing about the good stuff that goes on – it was what I was doing before I turned to “the Connor Report“. It was a cataclysmic shift from one extreme of care to another (that brilliant, easy read version of the report is from Change Peopleby the way).

I know some brilliant folk who support people with learning disabilities and complex needs. I’ve seen first hand some of the excellent and groundbreaking support that exists for autism, learning disability and for people with challenging needs. My sister’s benefitted from the right support (albeit after a bit of a fight).

Yet despite the good practice, great intentions, campaigns, official frameworks and guidelines and reams of evidence, the pace of change for people with complex needs is slow. And poor practice remains.

When you find out about the experience of Connor’s family – his mother Sara Ryan and stepfather Richard Huggins – it is impossible not to compare it with what’s meant to happen.

Below, are just three areas I very quickly plucked from some of the papers I’ve been revisiting:
– commissioning of care services
– the concept of personalisation (tailoring care to the individual rather than a “one size fits all” approach)
– the wider issue of the status of people with learning disabilities in society (something that angers me enormously).

The gap between the rhetoric and the reality – most notably when it comes to people with “challenging behaviour” and complex needs – is clear. Cast your eyes over these “then” and “now” juxtaposed extracts and comments.

Then – commissioning of care services:
Mansell Report 2007 :
“Combining the different elements of services to ensure that people with learning disabilities whose behaviour presents a challenge are served well is the job of commissioning. Models of good practice have been demonstrated and service providing organisations committed to good practice exist. However, in the period since 1993 development has not kept pace with need. Placement breakdown continues to be a widespread problem in community services; people are excluded from services; assessment and treatment facilities cannot move people back to their own home; some of the placements eventually found are low value and high cost. What is it that commissioners need to do to tackle these problems? …Failure to develop local services threatens the policy of community care. Doing nothing locally is not an option. Out-of-area placements will `silt up’ and reinstitutionalisation (through emergency admissions to psychiatric hospitals or via the prisons) will occur. Special institutions and residential homes for people whose behaviour presents a challenge will be expensive but of poor quality and will attract public criticism. Overall, the efficiency of services will decrease because of the widespread lack of competence in working with people who have challenging behaviour. Commissioners will have less control over and choice of services. Individuals, carers and staff will be hurt and some individuals whose behaviour presents a challenge will be at increased risk of abuse. Staff will be at increased risk from the consequences of developing their own strategies and responses and managers will be held accountable where well-intentioned staff operate illegal, dangerous or inappropriate procedures.”

Now – commissioning of care services 2014:
Sara Ryan: “How can the commissioners not do anything [with reference to why assessment and treatment units are still commissioned]…If you commission a young person to staying in a £3,500 a week unit, then it is your duty to go and make sure that is worth it.”
Richard Huggins: “Commissioners commission public services on our behalf..Clinical commissioning group decide between competing NHS provision, so you can’t have model like that [where you buy a service and then when it goes wrong] say ‘well it’s not our fault’.”

Then – being ‘person-centred’
Valuing People, A New Strategy for Learning Disability for the 21st Century (2001) :
“A person-centred approach will be essential to deliver real change in the lives of people with learning disabilities. Person-centred planning provides a single, multi-agency mechanism for achieving this. The Government will issue new guidance on person-centred planning, and provide resources for implementation through the Learning Disability Development Fund.”

Now – being ‘person-centred’ 2014
Sara Ryan: “There is no personalisation in these units…”
Richard Huggins: “We thought they’d say ‘this is what Connor needs this is what we should do’. How that would be achieved, we had no preconception. But we thought he’d come back with a better plan, we wanted an outcome that would suit Connor.”

Then – the status of people with learning disabilities in society
Valuing People (2001) :
“People with learning disabilities are amongst the most vulnerable and socially excluded in our society. Very few have jobs, live in their own homes or have choice over who cares for them. This needs to change: people with learning disabilities must no longer be marginalised or excluded. Valuing People sets out how the Government will provide new opportunities for children and adults with learning disabilities and their families to live full and independent lives as part of their local communities.”

Now – the status of people with learning disabilities in society 2014
Sara Ryan: “There is a prevailing attitude about learning disability that somehow, if you’re born ‘faulty’ you cannot expect to lead a full life. What is really upsetting is fact that Connor and most young people I know are learning disabled have so much to contribute, and so much people can learn from them, but people can’t see any value in them and don’t see them as human beings, I find that really distressing.”
Richard Huggins: “There are three issues here. What happened to Connor – the care he received and how he was treated, which is still not accounted for – the way Southern Health Trust behaved as an organisation, and then there is a more general issues about the status of learning disabled people in British society.”

I could add more examples, but I think the contrast is clear.

There is a strong and growing momentum for action following Connor’s death. There is also anger but, as someone wisely told me yesterday, the anger can be channelled into action. There is also, as one chief executive of a care organisation tweeted about Connor earlier today “an onus on all of us who care to stand together alongside families seeking justice”.

* There is a “Connor Manifesto” which outlines what needs to happen next and you can find out more about the campaign on the 107 Days site and Sara Ryan’s blog.

Why did Connor Sparrowhawk die in a specialist NHS unit?

Connor Sparrowhawk (photo: Sara Ryan)
Connor Sparrowhawk (photo: Sara Ryan)
The death of 18-year-old Connor Sparrowhawk at Slade House assessment and treatment unit was avoidable, according to a recently published report. What happened to Connor, who was admitted to the specialist care in Oxfordshire a year ago today, has reignited debate about the use of these units – Winterbourne View was a privately run unit where the abuse of patients with learning disabilities was exposed by BBC’s Panorama in 2011.

The full piece I wrote for today’s Guardian is here – please read it alongside the words of Connor’s mother, Sara Ryan, who describes the fight for justice for her son.

From today for 107 days (the length of time Connor was in Slade House), there is a campaign to raise awareness of what happened to Connor. Building on the palpable sense of anger and injustice, it is hoping to push for action.

You can follow the campaign on Twitter @JusticeforLB #JusticeforLB. Connor’s mother’s blog is here.

I’m posting some additional contributions from a few interviewees here as there wasn’t space in the published piece.

Sandie Keene, president of the Association of the Directors of Adult Social Services, stressed the fact that it’s not just social care commissioners who are responsible for the continued use of units like Slade House:
“Commissioning these days is a complex environment [it’s within] NHS England, clinical commissioning groups, social care commissioning.” Keene adds that the solution is partly “to find better ways of cascading the best practice”.

Mark Neary won a legal fight to get his autistic son, Steven, out of the kind of care Connor was in. He explained what these units are like for individuals and families: “After Steven’s experience in an assessment and treatment unit where he was unlawfully held for the whole of 2010, I question what the purpose of these places is. In our case, the judge remarked about the lack of assessment when Steven was first taken there and there didn’t appear to be any treatment taking place. The unit appeared to me to be a holding container. And a very expensive holding container at that. The other aspect of the unit that shocked me was how much families were excluded. On a major medical document, I wasn’t even mentioned as Steven’s next of kin – his keyworker at the unit was. To have my whole 20 years experience of Steven negated was quite terrifying. And worst of all, it must be awful for the person detained there to be cut off from the people who have cared for them all their life. Steven has autism. Does that need treatment? And even if it does, is it good for a person for whom routine is everything to be kept in one of these places?”
* You can read Mark’s blog and his stories of his son’s time in an assessment and treatment unit

Jenny Morris, an independent consultant who advised the previous government on disability, puts the lack of progress on moving people out of units and into the community down to two things: “There are negative attitudes in society in general toward people with learning disabilities plus ignorance or lack of understanding about how denying people the ability to communicate their needs, and failure to meet their needs, leads to “challenging behaviour. When things go wrong the response is to write new or updated standards and codes of practice etc instead of paying attention to how to recruit, retain and value people who can – because of their values – provide good care and empower people. If we paid more attention to the characteristics of people who provide good care, plus how to support them with training and good working conditions etc, and less to problematising the needs of people with learning disabilities we might not see the kind of institutional disablism that persists in so many services.”

A senior contact, who didn’t wish to be named but who runs a large care organisation, talked about the closure of long-stay hospitals and how what’s developed in their place is almost as bad: “We closed closed them and some pretty similar things have replaced them. The policy context for working with people with challenging behaviour has been clear for over 20 years..the best way to develop servives for people with challenging behaviour is individualised services around the person and it needs to be small scale local and in the community. It has been out there [ie known about and practised by the best care providers] for years, but seldom happens.”

I interviewed Katrina Percy, the chief executive of Southern Health, which ran the now-closed unit that Connor was in. Southern was criticised in an independent report into Connor’s death and is currently being investigated by health regulator Monitor.

Asking why units like Slade House exist, I mentioned the buck passing that families feels goes on between ‘stakeholders’ – with commissioners of services and clinicians complaining about the lack of community-based alternatives, and service providers for people with learning disabilities suggesting commissioners don’t know about, or cannot afford, existing alternatives. Percy replied: “I feel it’s got to be a joint piece of work, so often the experts [who sit on commissioning boards] come from our organisation, but the commissioners need to make the decision that they wish to commission this new [community-based] model of care”.

I asked if concerned the trust is worried about losing its healthcare licence given the critical reports (the report into Connor’s death and inspections by the care sector regulator, as the piece today explains). Percy responded that she did not know about a potential breach of licence, but said the trust had been in discussion with Monitor and “the organisation overall has an awful lot of strengths”. She added: “One of the hardest thing in my job is about enabling focus where things go wrong, but not allowing that to pervade a very big organisation where lots of things go very right [where] in fact we’re seen as leading edge and my job as chief exec is to absolutely make sure that we get that that balance and prioritisation and focus right.”

On the calls for her resignation, Percy replied that she would like to “meet the family and talk to them directly so they actually see what I’m like as an individual and as a chief executive.” She added: “There are many things we are very proud of in this organisation and we provides services to millions of people and therefore I think my best place is to help us continue to improve services for every single person who needs to use them.” Asked to clarify, Percy replied: “I don’t see that it’s approporiate that I would resign, no.”

Responding to what she would say if she met Connor’s family, specifically his mother Sara Ryan, Percy said: “I would apologise unreservedly that her son and her family were let down by our services…I would ask her when she feels ready, if that is what she would like to do, to continue to campaign and work with us to design a set of services where this will never happen again.”

* Seven members of staff who worked at the now-closed Slade House are subject to a “human resources investigation”, with the first disciplinary hearing due to take place this month. In an email after the Guardian piece went to press, Southern Health confirmed “three members of staff have been suspended”.

He should never have died

I launched this blog as a platform for some of the excellent, uplifting, often unsung, good practice in social and public policy.

In contrast, this week I’ve been finding out about some of the worst care possible.

The opposite of “care”, in fact.

A host of very adept, passionate bloggers and campaigners have been demanding not only answers, but action after the death last year of Connor Sparrowhawk. Connor, 18, died while “being cared for” at a Southern Health Trust in-patient unit in Oxfordshire for people with learning disabilities.

As Connor’s mother Sara has said, “He should never have died and the appalling inadequacy of the care he received should not be possible in the NHS.” Sara’s powerful blog includes links to bloggers and commentators whose words are well worth reading.

I had to share Sara’s beautiful and powerful slideshow here; please watch it if you’ve not seen it before. And if you have already seen it, watch it again to remind yourself of the very real people and families behind the astonishing inequalities in care experienced by people with learning disabilities.

Much has been written about Connor, and more will be – although clearly we need more action than words alone – but taken together, Sara’s slideshow and these stark words from the independent report published last week tell you much of what you need to know: “the death of [Connor] was preventable”.

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* Read more on Sara’s blog and sign up for email updates here