Tag Archives: service users

How a national scandal goes unnoticed

Tomorrow is the seventh anniversary of an event that reflects an enduring national scandal. A long-running scandal that doesn’t trigger public or political outrage.

I’ve written an opinion piece for the Guardian about this today.

On May 31 2011 BBC’s Panorama exposed the abuse of people with learning disabilities at the NHS-funded Winterbourne View assessment and treatment unit (ATU) in Gloucestershire.

There are around 1.5m learning disabled people in the UK, including my sister, Raana. But the general disinterest in learning disability means that tomorrow’s anniversary will not trouble the national consciousness.

Rewind to 2011, and Winterbourne View seemed like a watershed moment. The promise that lessons would be learned was reflected in the government’s official report [pdf], and in its commitment to transfer the 3,500 people in similar institutions across England to community-based care by June 2014. Yet the deadline was missed, and the programme described by the then care minister Norman Lamb, as an “abject failure”.

Since then, various reports and programmes have aimed to prevent another Winterbourne View. These include NHS England’s “transforming care” agenda, which developed new care reviews aimed at reducing ATU admissions.

Yet despite welcome intentions, government figures [pdf] for the end of April 2018 reveal that 2,370 learning disabled or autistic people are still in such hospitals. While 130 people were discharged in April, 105 people were admitted.

This month, an NHS investigation reflected how poor care contributes to the deaths of learning disabled people. It found that 28% die before they reach 50, compared to 5% of the general population.
Unusually, this “world first” report commissioned by NHS England and carried out by Bristol University came without a launch, advance briefing or official comment. It was released on local election results day ahead of a bank holiday. Just before shadow social care minister Barbara Keeley asked in the Commons for a government statement about the report, health secretary Jeremy Hunt left the chamber.

The most recent report was partly a response to the preventable death of 18-year-old Connor Sparrowhawk at a Southern Health NHS Foundation Trust ATU. The Justice for LB (“Laughing Boy” was a nickname) campaign fought relentlessly for accountability, sparking an inquiry into how Southern Health failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems. The trust was eventually fined a record £2m following the deaths of Sparrowhawk and another patient, Teresa Colvin.

Recently, other families whose learning disabled relatives have died in state-funded care have launched campaigns, the families of Richard Handley, Danny Tozer and Oliver McGowan to name just three. Andy McCulloch, whose autistic daughter Colette McCulloch died in an NHS-funded private care home in 2016, has said of the Justice for Col campaign: “This is not just for Colette… we’ve come across so many other cases, so many people who’ve lost children, lost relatives”. Typically, the McCullochs are simultaneously fighting and grieving, and forced to crowdfund for legal representation (families do not get legal aid for inquests).

To understand the rinse and repeat cycle means looking further back than 2011’s Winterbourne View. Next year will be 50 years since the 1969 Ely Hospital scandal. In 1981, the documentary Silent Minority exposed the inhumane treatment of people at long-stay hospitals, prompting the then government to, “move many of the residents into group homes”. Sound familiar? These are just two historic examples.

If there is a tipping point, it is thanks to learning disabled campaigners, families, and a handful of supportive human rights lawyers, MPs and social care providers. Grassroots campaigns such as I Am Challenging Behaviour and Rightful Lives are among those shining a light on injustice. Care provider-led campaigns include Certitude’s Treat Me Right, Dimensions’ My GP and Me, Mencap’s Treat Me Well.

Pause for a moment to acknowledge our modern world’s ageing population and rising life expectancy. Now consider the parallel universe of learning disabled people. Here, people get poorer care. Consequently, some die earlier than they should. And their preventable deaths aren’t properly investigated.
You can read the full article here.

Social Issue opinion piece: learning disabled people should have equal access to heritage and culture

Amber Okpa Stother leads a creative workshop (photo: Martin Livesey, Venture Arts)
Isn’t it about time that learning disabled people enjoyed the same access to cultural lives and work as everyone else?

This is one question that Venture Arts (VA) and our speakers will be asking the heritage and cultural sectors at our symposium, Making the Case, at the Grand Hall, Whitworth Art gallery on the 25th May. VA is an organisation that specialises in visual arts in the North West.

“People with autism can do things like other people that don’t have autism in society. Society should be more accepting of people and not assume people can’t do things.” This is what Amber Opka Stother says – Amber (pictured above) chairs the VA steering group, has worked at Manchester Museum and arts centre HOME Manchester and is an ambassador for learning disabled people in the heritage and culture sector.

Our symposium will showcase the experiences of learning disabled people who have formed VA’s Cultural Enrichment Programme, funded through the Heritage Lottery Fund. The programme has seen over 20 people undertake 16 week work placements in some of Manchester’s best known cultural and heritage venues.

On the day we will also be seeing and hearing about other projects from across the country and highlighting areas of best practice.

“Unfortunately, our experience shows that people often don’t feel that big cultural institutions are for them or know how best to welcome people into their buildings. In my view we need to see more learning disabled people working within culture to be able to start to overcome this and make real change happen”, says Amanda Sutton, VA director.

This kind of inclusion makes sense, adds Amanda: “You are going to feel much more comfortable about going into a building, that can otherwise feel quite austere and foreboding, if you can relate to and identify with the people welcoming you and working within the venue.”

In 2015, researchers Lemos and Crane looked at learning disabled people’s access to museums and galleries (pdf). It stated: “Despite longstanding commitments to access, participation, learning, equality and diversity, museums, galleries and arts venues are not currently required by funders or policy makers specifically to promote access for people with intellectual disabilities as they are in relation to other groups…Mainstream arts organisations did not seem always to have a clear framework of good practice for improving access for people with a learning disability. This was perhaps the consequence of widespread uncertainty and anxiety among those with little personal or professional experience of people with learning disabilities.”

So Venture Arts aims to rectify this through working with cultural institutions to introduce learning disabled people to every aspect of their working operations. We reckon that if we can get people in “through the back door”, they will gradually change attitudes and integrate into institutions. Through our work so far, this has indeed happened. People have been back stage, in the conservation rooms, behind the scenes, delivering tours, in museum shops, in the staff room and are now well known by all the staff and visitors alike.

Here’s what Amber thinks about her experiences with VA so far:

At Manchester Museum, I volunteered and worked in the shop and in the postroom and in the vivarium as well. I ended up doing a tour for my friends and family which they really, really enjoyed, it boosted my confidence about speaking to people. It was really nice meeting lots of new people I did things that most people don’t . It’s nice to see the different parts of the museum.

People were, very welcoming and I think I am helping them to learn more about working with people with autism too, maybe like how people communicate or something.

Now I’ve started a new placement at HOME, an arts centre, which I’m really enjoying. We get to go behind the scenes and see how the cinema works which is really interesting and we have worked at the front of house and we get to see some free shows as well and that’s really, really good.

I think it’s important to have people with autism working in these places to see what great skills people have and how it makes a difference to volunteering. They will be more interested in employing people with autism, it will make a big difference.

On a personal level, it has helped me to be more confident and it’s helped me to become more confident in doing other jobs and things. I also work in a school and this experience has influenced how I am with the children, I feel more confident because I had to speak to people and that has lifted my confidence.

Last year I also delivered a workshop about making galleries accessible at a conference called Creative Minds and I loved every minute of it. I probably wouldn’t have been able to do this if I hadn’t worked at the Manchester Museum beforehand. There were a lot of people there too so I was really happy with myself.

I’m really looking forward to the symposium at the Whitworth as well and to interviewing people from museums and galleries. I’m going to interview them about the job and what we do. It will be really important to come to the symposium because you will get to hear about the great work that museums do with people with disabilities.

Even though I’ve got autism I try and do things that people without autism think that people can’t do like drive, I’ve passed my driving test that was a big achievement for me because I’ve always loved cars. People with autism can do things like other people that don’t have autism in society. We need to celebrate difference and make sure that people recognise what great things people with disabilities can do. I get upset sometimes if people don’t understand me, like my driving instructor who didn’t think I could pass my test. It’s important to listen so people can know what message people are trying to get across.

My advice for other museums? People have really great skills and they should give people the chance. People with disabilities can be really good at doing lots of great things and have skills that other people without a disability might not have, which can be valuable in a workplace. For example, people can be more understanding of other people.

It would make me happy to see people with disabilities working in museums because it’s good to see people with great skills doing a good job. If people give them a chance it would be a great place to start when people don’t feel comfortable about going into a museum.

Barriers for learning disabled people in going into a museum can be the staff of a museum because they might be a bit rude towards them or can’t understand if someone has no speech or something. It might not have a ramp or the lift might not be working or someone might be deaf as well so that could be a barrier. Museums should be more accessible to people with disabilities and people should make sure they don’t put jargon and put language that people understand on their walls.

I’m looking forward to the 25th to hear about what people are going to say. I’m looking forward to meeting everyone and to what people have to say about their experiences at the museums and it should be a great day.

Find out more about the Venture Arts symposium here or follow on Twitter, Instagram or Facebook.

Venture Arts symposium is on Friday 25 May in Manchester.

Making buses more accessible for learning disabled passengers

For Mario Christodoulou, buses are essential. “I use buses every day to get to work and to the shops – it is my only way of travelling,” he says.

Christodoulou, from south-west London, is a peer advocate at learning disability charity Kingston Involve. As part of his work championing the rights of learning disabled people, he is involved in the Transport for London (TfL) Big Day Network, which holds learning disability awareness days in bus garages, bringing together learning disabled Londoners, their support staff, bus drivers and managers.

The network has 50 members from self-advocacy groups in London – 37 people with learning disabilities and 13 supporters – and has run events at 15 of the city’s 80 garages over the last three years in partnership with George Marcar, a TfL driver communications manager, surface transport. Discussions are held in a stationary bus, which helps people to visualise the issues raised.

Areas of debate include confusing signage or drivers being unaware of so-called “invisible disabilities” – to find out more, read the rest of my article in the Guardian.

Community approach to social work delivers more personalised care

If you need social care support, why can’t services respond better to your individual aspirations – instead of fitting you into what’s already on offer?

This aim – shifting traditional social work practice to “community led” methods – is at the heart of a new programme I’ve just reported on.

Leeds is one of nine local authorities changing adult social care by developing community-led social work (in a nutshell – more local solutions). The councils are being supported in this drive by social inclusion charity National Development Team for Inclusion’s community-led support (CLS) programme. NDTi has just published an evaluation from the first year of delivery in the participating areas

Gail*, for example, has a learning difficulty, mobility problems and is prone to angry outbursts. Leeds council adult social care staff have supported her intermittently over a few years, helping with self-care and chaotic living conditions.

Recently, it considered commissioning weekly visits from a support worker to help Gail manage her home. But instead, under a new approach launched in Leeds last year, Gail met social work staff at community “talking points” – venues such as libraries and churches instead of at home or at the council. The neutral environment sparked different conversations about support. Gail said she wanted to volunteer and staff felt able to be more creative with her care.

A social worker supported Gail to explore opportunities at her community centre, where she began volunteering. Her self-esteem has grown, her personal appearance has improved and she has begun anger management classes.

Feedback from people like Gail involved in the new support method includes comments about staff such as “they listened to me” and “we did talk about the important things”.

The concept of community social work is not new, but demand for social care, pressure on staff and funding cuts mean less time and freedom to develop innovative solutions. The 2014 Care Act encourages community-focused support, but this has been hard to achieve. A difficulty in developing “strengths-based” solutions is well documented, for example, in recent guidance from Think Local Act Personal.

At Leeds, adult social services director Cath Roff says the council had two choices: “Either we go down the road of ever-tightening interpretation of eligibility criteria to manage resources, or try a new approach. Social work services are increasingly becoming the ‘border patrol’, policing in order to manage reducing budgets. None of us came into social care to do that.”

Read the rest of the piece here

*not her real name

Prejudice and inadequate support: the situation for minority ethnic children with learning disabilities

Callum and Parmi Dheensa (photo: Parmi Dheensa)

When Parmi Dheensa’s son Callum kissed a classmate on the cheek not long after starting at a special needs primary school, a teacher asked his mother if this was “culturally appropriate”. Dheensa said that as long as the classmate was happy, nothing in her son’s Punjabi heritage forbade such displays of affection.

It is just one example over many years of professionals leaping to incorrect conclusions based on the ethnicity of her severely learning disabled son, who is now 19, says Dheensa. They also assume she does not work and is supported by an extended family when in fact she is a lone parent who works full-time. Dheensa, 43, was once told that her son’s support – he lives at home and is at a special school – was “better than it would be in India”. Fair point maybe, she says, but irrelevant to a British-born, Midlands-based family.

My Guardian article focuses on Parmi’s charity, Include Me Too, which works with 1,500 families a year. It has launched a campaign for the government to review its equality duties in relation to special needs education and support for BAME communities.

The charity has now launched a campaign asking the government to review BAME representation in government decision-making (existing involvement is, says Dheensa, “tokenistic”) and a new disability and equality strategy to ensure families get better support. The criticism is that professionals do not fully involve parents in reviews of the support they require, or in drawing up education, health and care plans, and parents or carer forums are predominately white British.

Read the article on the Guardian website.

Campaigning new disability rights network for London

Disability campaigners in west London have long fought against cuts
Disability campaigners in west London have long fought against cuts

A new organisation bringing together disabled people’s organisations in west London has just been launched. The launch of Hammersmith and Fulham Disabled People’s Organisations Network was made on the International Day of Persons with Disabilities last week and coincided with the local authority’s decision to abolish home care charges – something that the campaigners behind the new network (Hammersmith and Fulham Coalition Against Cuts HAFCAC), has long fought for.

The new network will collaborate with the council “to ensure disabled people’s involvement in the design and delivery of new policies and programmes”. In this guest post, Kevin Caulfield, who chairs HAFCAC, and fellow campaigner Debbie Domb, explain more about the new organisation and you can read more here.

Why we launched the Hammersmith and Fulham Disabled People’s Organisations Network:
DD: Our main aims are to promote the rights of disabled people, to support local disabled people to speak up and get their voices heard and to promote the social model of disability.
KC: This is hopefully dawn of new era in Hammersmith and Fulham. We want to work in equal partnership where we can with the new council. Bringing together the borough’s disabled people’s organisations (DPOs) unites our experiences, expertise providing peer organisational support.

How the new group will be different to existing organisations:
KC: We believe it’s the first local network of DPOs certainly in London. We need more than ever to work together to defend and promote inclusion human rights of disabled people.

We believe there’s something of a “tipping point” in disability rights at the moment:
KC: We have had enough of the scapegoating, punitive policy changes pushing us back to the margins and some of us over the edge to desperation, isolation, destitution and in some cases suicide or death by negligence.
DD: In the borough of Hammersmith and Fulham, these factors were magnified as we were ‘David Cameron’s favourite borough.’ (Thankfully no longer ) Policies were implemented here prior to being rolled out nationwide. Disabled people were treated with total contempt by [Tory former council leader] Greenhalgh et al; we were laughed at in council meetings and not allowed to speak. cuts to our services were disguised as ‘efficiencies’ and we were treated as cash generators.
HAFCAC started as a grassroots campaigning group that was entirely self funded. Since then many grassroots campaign groups of disabled people have formed. Ian Duncan Smith particularly targeted disabled people as we were perceived as unable to fight back, groups like DPAC (Disabled People Against Cuts) which spearheaded actions by hundreds of disabled activists show he was mistaken.

There is a raft of issues locally that disabled people are concerned about:
KC: Nearly every aspect of our lives [concern us] but locally
· Hospital closures
· Accessible and truly affordable housing
· The breaking up of schools making inclusion of disabled students less likely
· Charging for services
· Eligibility for state support
· Cuts to standard of living, destruction of the welfare state.
· Closure independent living fund
· Taking our direct payment support service in house with no consultation
· Quality of home ‘care contracts.

HAFCAC is currently campaigning on a number of issues:
DD: Hospital closures, continuing to work with other activists with DPAC and other DPOs currently on saving ILF; we’re waiting for judgement any day now [a high court case has since been lost but campaigners are determined to fight on].

We have a vision for the future work of our new organisation:
KC: I hope we have created a new model for working effectively with a council that is different from involving us just when the decision is about to be made that we are seen as a flagship borough all over for promoting disabled people equality and starting to make it really happen. That we can expose austerity for what it is a calculated pernicious opportunity used to demonise, discriminate, worsen life chances by punishing the poor and marginalised.
DD: Finally we have a council that wants to engage and work with us, the relationship is mutually beneficial. It will be fantastic if Hammersmith and Fulham can be seen as a flagship borough for disabled people’s equality, as rather than as previously the borough who ‘put disabled residents last.’

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.

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.

Seeing dementia through a different lens

Ashwani and Didi laughing, from Love, Loss and Laughter by Cathy Greenblat
Ashwani and Didi laughing, from Love, Loss and Laughter by Cathy Greenblat

I was entranced by some of Cathy Greenblat’s photographs of people with Alzheimer’s, which I came across when researching a recent piece about dementia.

Dementia is a major global challenge – health experts describe it as the next global pandemic. One in three of us will develop it – 135 million people by 2050, according to Alzheimer’s Disease International (ADI), and its annual worldwide health and social-care cost is around £400bn.

Yet Greenblat’s work goes behind the headlines to present the human aspect of the disease.

The images in the book Love, Loss and Laughter present a rare view of the illness, shattering the stereotypical image of people as personality-free empty shells, discarded and forgotten by society.

Marie-Therese at a party (photo: Cathy Greenblat)
Marie-Therese at a party (photo: Cathy Greenblat)

Greenblat’s thought-provoking project to document the lives of people with Alzheimer’s is endorsed by ADI and has taken her all over the world for over a decade (it was published in 2011).

An academic and photographer whose grandparents and mother all developed Alzheimer’s, the sociologist’s work combines a large scale vision and research expertise with a very personal focus on human relationships and societal attitudes. Many of her photographs reveal the characters behind the disease, presenting people with Alzheimer’s in a social or familial context and among friends and carers.

The hundred or so photographs taken in care homes, private houses, clinics and day centres all over the world show how it is possible for people with dementia and their families and carers to experience some joy as they lose their cognitive functions (the “love” and “laughter” in the “loss”). The images show how people can maintain both independence and quality of life.

It is worth pointing out, however, the images do not shirk from touching on the frustration, anxiety and isolation – particularly at the end of life – which Alzheimer’s brings.

As Greenblat, Professor Emerita of Sociology at Rutgers University, writes in the book, “people with dementia retain vital capacities”. She reinforces the notion that our attitudes to dementia must change if the experience of those with the illness is to improve; her book quotes Michael Verde, president of American dementia organisation Memory Bridge, who says People with dementia don’t disappear unless we disappear from them”. It is possible, as Verde has said, “to change what is referred to as ‘the long goodbye’ into ‘a long hello’”.

The photographer tells me that people are often surprised to hear that the subjects of her pictures have the disease, she says: “I’m often struck by the responses of viewers of my photos at exhibits who ask with some astonishment, ‘But does this person really have Alzheimer’s?” They have only seen images that show people who are sad, dispirited, disconnected, and it takes them time to accept that that is not the necessary condition.

“People who are treated as hopeless lose hope; people who are treated as being unable to do things lose confidence. We don’t treat a sense of hopelessness or lack of confidence with medication: we do it by helping them to feel needed, cared about, being stimulated, communicating differently with them.”

Greenblat will be in Australia in late February to photograph more care settings and explore how to create “joy filled residential communities for people with dementia”. She hope this will result in a multimedia project with interviews, photographs and videos. Some more of her work is included in the gallery below:

• I asked Cathy a few more questions about her work, here’s what she said:

“Perceptions of Alzheimer’s are changing in the time since I’ve been photographing.One of the big changes is that there is so much more talk about Alzheimer’s, in the press, in books of all sorts, on the internet in the form of webinars and connections that are global.

Of importance is the greater participation in the dialogue by people living with dementia – people with diagnoses and people who are their care partners. This is no longer just the medical community telling us about what they know, but sharing of experience…Not everyone is listening to these new voices, but those who do have learned that there are ways to continue a quality life for much longer than has generally been believed.

How has my academic background helped me in my work? Probably the most important thing is that I came to this work with a knowledge of doing research… I knew how to go into new situations and places and learn from people about their lives. Now I was adding a camera to my “tool kit”, as I believe that seeing is so important in changing one’s mind… I speak in an early chapter in the book about ‘Changing people’s minds about people’s changing brains’ – that’s what I have been doing. And I think that is crucial.

I thoroughly believe that we need to distinguish between the physiological changes as we become ill, and the primary symptoms brought about by that. But there are many secondary symptoms such as apathy, aggression, social isolation, that are not caused by the disease but by the way people are treated and come to see themselves .

People who are treated as hopeless lose hope; people who are treated as being unable to do things lose confidence. We don’t treat a sense of hopelessness or lack of confidence with medication: we do it by helping them to feel needed, cared about, being stimulated, communicating differently with them… It is what the photos illustrate. This is not a new perspective… it has been discussed by scholars around the world, but the addition of visual evidence in photos that clearly are not posed has given them wider acceptance.

Many people “run away” from dementia. Surely some people run away from family members or friends who begin acting strangely and are difficult to deal with because they are don’t want to deal with the problem. We all know of siblings who fight about the care to be given to a parent, leaving the responsibility on someone else’s shoulders. They say they are too busy, they had poorer relations before, they have other responsibilities..

But many people are not selfish and ill informed – rather, they are frightened, they don’t know what to do they don’t know what they can do, they believe that there is nothing that can be done until a cure is found. That is simply not true. There is so much we know how to do now to engage people in continuing stimulating activities. There is so much to be gained through creating partnerships with professionals and other groups that provide day care activities, memory centers, art and music therapy, etc.

We need to help people know that there is a great deal to do and inspire them to find resources near their homes or on the internet. Many friends and family want to be engaged and helpful but they don’t know how to do that. There are excellent books, pamphlets from the Alzheimer’s associations and other groups. This can not only help the person who is ill, but it makes the friends and family feel more empowered… They can learn what to say and how to act in ways that let the person feel they are understood, which in turn reduces the aggression which so often is the result of feeling they can’t clearly express their needs and desires.”

• You can watch some films on Love, Loss and Laughter here and here or visit the website to find out more about upcoming events related to the book and photography project. You can also follow Cathy on Twitter @CathyGreenblat