How do families of people with learning disabilities or autism feel they are treated by health and social care professionals? According to Karen Callender Caplan, who I interviewed for the Guardian, “You feel dismissed, you feel ignored … you have to gird your loins, you have to be ready to be bullish and persistent.”
Caplan’s sister Robin, who was severely autistic, had mild spina bifida and was partially sighted, died four years ago. She had been ill for over three months with intermittent vomiting and diarrhea, but the first her family heard of her condition was on the day before she died. In the months before collapsing at her Essex care home, the 53-year-old, visited her GP surgery six times and A&E twice. Yet her inflammatory bowel disease – a treatable illness – remained undiagnosed.
Despite says bereaved relatives must become campaigners, pursuing answers from disparate agencies.
An inquest last May at Walthamstow coroner’s court, in east London, concluded Robin died of natural causes contributed to by neglect, with expert witnesses noting missed opportunities to save her. However, there is be a second inquest this autumn as new evidence is to be presented about Callender’s medical care. The pre-inquest hearing takes places next week.
Caplan hopes the new development will reignite the family’s campaign for a “Robin’s law”. This would make it a criminal offence for a care home not to inform next of kin if someone they support, who lacks capacity to act in their own best interests, has an ongoing illness, and then dies. They also want there to be a duty on medical staff to inform relatives when treating such patients.
Equally important are more rights for the individuals supported so they have more control over their own lives. This is what the ongoing campaign for the LB Bill -sparked by the preventable death of Connor Sparrowhawk – would put in place.
As Ruth Gould, the artistic director of the UK’s biggest disability arts event, DaDaFest, pointed out in an interview I did with her for the Guardian, the latest cuts threaten to make disabled people “more invisible”. The work of disabled artists, as she says, is also at risk, thanks to sharp reductions in funding from local authorities and Arts Council England (Ace).
In 2001, Gould organised a one-off community arts event for Liverpool city council to mark International Disabled Peoples’ Day. As the head of the North West Disability Arts Forum (NWDAF), Gould, who is deaf, argued a single day was inadequate, and designed a groundbreaking week-long festival.
Fifteen years on, DaDaFest is the UK’s biggest disability arts event and Gould its artistic director. The NWDAF eventually adopted the name of the jewel in its crown (“DaDa” refers to the initial letters of each word in the phrase “disability and deaf arts”), so DaDaFest refers to both the festival and its parent charity. Each biennial extravaganza draws 10,000 visitors and participants. It has launched the careers of comedian Laurence Clark and actor Liz Carr, and helped Liverpool win European Capital of Culture 2008.
Gould commends the Arts Council’s Creative Case for Diversity, launched in 2014 to encourage more BME, deaf and disabled people into arts, but fears such efforts are a drop in the ocean. She explains: “We don’t have the disabled people who put people on the stage – the producers, the casting directors, curators, decision makers.” She adds of DaDaFest’s recent BME seminar: “We tried to attract those we see as gatekeepers…[to] look at the barriers and issues and use them to try and influence change by identifying benchmarks that we can reflect onto to see if change if happening.”
“I always wanted it to be about dance, drama, feelings”, said actor Nathan Bessell recently of the new play he has inspired and collaborated on.
The 31-year-old stars in Up Down Man, at the Salisbury Playhouse until March 12. The play, as I explain in this piece on the Guardian’s social care network today, is about Matty, a young adult with Down’s syndrome. Bessell, who plays Matty, has influenced the script, which also draws on stories from families of people who have a learning disability.
To explore the issues raised, there will be three discussion forums for professionals in health or social care, theatre managers and families, with the first of these happening this weekend.
The show, by Bristol-based Myrtle Theatre Company, involves dialogue, original music and dance, and is a sequel to the company’s Up Down Boy, which I featured on the blog some time ago. The original play, also starting Bessell and written by his mother, Sue Shields, was performed in 2013 at the National Theatre and toured the country. The sequel, written by Brendan Murray, is not autobiographical, but follows the same character into adulthood and is presented from his perspective.
The two years of research and development involved in the new play currently running at the Salisbury Playhouse Murray involved the views and experiences of families and carers, with the process tailored to enable Bessell, who has limited vocabulary and a hearing impairment, to contribute.
Heather Williams, the artistic director of the Mytrle Theatre Company, has known Bessell since she began working with him when he was 16. Williams
Williams says her fellow actor’s influence has led to a more thoughtful, and gradual method of making theatre. However, as she stresses in today’s piece, the aim is also to produce a high quality piece of entertainment: “I hope people won’t think, ‘I’m going to see an issue-based play’, but come and see a damn good piece of theatre that changes the way they think.”
When newlywed Tessa got back to the hotel with husband Mark after their wedding, she found he’d arranged a surprise – he had scattered flowers and balloons around the room.
As Tessa recalls in a new project and book, Great Interactions by photographer Polly Braden: “I kept laughing at Mark – he was trying to throw the flowers around me…He’s happy now he’s married. We love each other. Being married doesn’t feel any different. That’s it. It makes me feel happy. Mark’s already got his name, so his wife will be Tessa Jane Ahrens, that’s mine and Mark’s choice. I used to be Warhurst – not anymore now. When my bus pass has run out they’re going to change my name on it.”
The couple’s story is one of many documented in Braden’s book and exhibition. The project aims to capture the daily lives of people with learning disabilities, from everyday interactions to landmark events like Mark and Tessa’s wedding. The book will be published next month and the images will also be featured in an exhibition at the National Media Museum, Bradford.
Polly Braden spent two years working with social care charity MacIntyre and the people it supports across the UK. The resulting work, refreshingly, offers a glimpse of the diverse, individual, ordinary lives of people with learning disabilities – around 1.5m people in the UK have a learning disability, but the population, usually seen as a homogeneous mass or single statistic, is defined by needs and lack of ability, as opposed to current or future potential.
Braden’s work does not gloss over the problems, but offers a different perspective. She explains: “The people I have met all have stories about the barriers, prejudice and ignorance they and their loved ones have faced in simply trying to have fair opportunities in life. But their stories are also inspiring and filled with heart-warming moments which would have seemed impossible to imagine earlier in their lives – from being active and using public transport to graduating from high school and getting married.”
The photographer’s aim was to try to take photos about support “at the best it can be, but not to gloss over the profound problems in the provision of care and support and the challenges around this as well”. The project tries to look at what can be achieved for people when they are given good support, “and to talk about what happens when they are not”.
The aim of the project is “to challenge out-dated, institutionalised images and improve public awareness by recognising and highlighting the every day interactions and life changing experience of people with a learning disability”. It also focuses on social care professionals’ attitudes towards and relationship with the people they support. As one support worker, Raul, told Braden of the person he works with: “Mikey needs this kind of support: he needs to be around people who know and understand him, who are willing to go a step further and discover the bright and amazing person he is.”
* All photographs by Polly Braden, the book Great Interactions is out in March and the six-week exhibition at the National Media Museum, Bradford, opens on 27 February.
* To mark the book’s launch, the National Media Museum and MacIntyre are asking people to share photos of “everyday moments that make life matter” on Instagram, using the hashtag #IamMe – see the website for more information
* For more reading, see this Guardian feature published at the weekend..
A Bristol-based dance project is spreading its inclusive arts campaign, training teachers to run ballet sessions for disabled children and their non-disabled counterparts.
My piece on the Flamingo Chicks dance school, which launched two years ago as a community interest company, is on the Guardian site today. Its weekly classes in Bristol, Leeds, York and London reach 1200 three to 19-year-olds with or without disabilities, and those with illnesses such as cancer. Classes offer access to mainstream dance activity (often, such classes are segregated), develop confidence, social skills, co-ordination, communication and concentration.
Now, the sessions are launching in Ghana – dubbed “the worst place in the world to be disabled” – sessions reaching 200 children and training 10 teachers to put on classes. Founder Katie Sparkes has contacts in Africa thanks to her work supporting charities with corporate social responsibility.
Sparkes says of the work in Ghana earlier this month: “We did lots of workshops with children aged two to 25 and also did a teachers’ training session where teachers and childcare workers from a variety of schools and orgs attended. We left them with lesson plans, equipment and a host of ideas. We’ve also set up an online ‘Global Chicks’ group where we can provide on-going outreach support. Any questions, ideas or motivation they need, our teachers will respond and coach them, also providing video tips or tutorials.”
Ballet, with its discipline and formal image, might not seem an obviously accessible art form, but Sparkes says it can improve body awareness, muscle strength and core stability. Its storytelling aspects and focus on character are also accessible.
The school has eight teachers who focus on trips and performances as goals and benchmarks, instead of exams. The 45-minute or hour-long sessions include drama, dance and yoga using sensory equipment like feathers, dance ribbons, scarves and flashcards for deaf children, or hula-hoops to teach arm movements to a blind child. The relaxed atmosphere means children may wander around or makes noises without fear of flouting any rules.
There are an estimated 770,000 children with disabilities in the UK. Three quarters of families with disabled children feel so isolated that it has caused anxiety, depression and breakdown, according to charity Contact A Family. Four in ten (38%) parents of disabled children say their child ‘rarely’ or ‘never’ have the opportunity to socialise with children who aren’t disabled, according to a 2014 Mumsnet and Scope survey.
Four years after the abuse of people with learning disabilities at Winterbourne View (and 30 years after the start of care in the community and 20 years after the influential Mansell Report), NHS England recently unveiled a £45m plan to move people out of institutional care and back into communities. “Homes not hospitals”, is the laudable vision.
This is where grand ambition contrasts with grim actuality, as I explain in a piece in today’s Guardian.
A report leaked to the BBC and sparked by the preventable death of 18-year-old Connor Sparrowhawk in a Southern Health Trust inpatient unit, revealed that the trust failed to investigate some 1,000 deaths in its care over a four year period.
Then yesterday, the Learning Disability Census Report 2015 from the Health and Social Care Information Centre revealed there 3,000 people in inpatient units – 3,500 if you count those “unreported” in the figures (more on this here from Mencap and the Challenging Behaviour Foundation, and the HSCIC explains the discrepancy under its editors’ note number eight here).
Déjà vu? In 2013, according to the HSCIC, there were also around 3,000 people in inpatient units (in fact half those in units today, were also there for the 2013 headcount). And a previous £2.86m government-funded improvement programme from the Local Government Association and NHS England tried but failed to move everyone out of such units by 1 June 2014.
The census, established in response to the abuse at Winterbourne View, also shows the average length of patients’ stay is five years, there is heavy use of antipsychotic medication (almost three-quarters of people – despite the fact that less than a third have a diagnosed psychotic disorder) and more than half self-harm, have accidents or suffer assault, restraint or seclusion. Around a fifth of all inpatients are at least 100km from home.
Reading these stark facts would lead most of us to conclude that if you have a learning disability, you’re less likely to be cared for properly in life, unlikely to have your premature death investigated thoroughly – but if you’re lucky, you might be included in a census (depending on the data collection methodology etc etc).
I’m more pragmatic than negative. My sister, Raana, who has a learning disability, leads a busy, active life where her choice is central to her daily life. There are many organisations out there doing great stuff. I’ve met people who have moved from institutions into supported housing in towns and cities, with the help of truly brilliant, hardworking care staff. I’ve spoken to families who feel involved in shaping the care of their son, daughter or sibling, some with very complex needs. I’ve read – and written – reports outlining good practice in ensuring people get out of these places. While there’s still a postcode lottery at play, “we know what good looks like”, as stressed by many social care experts I speak to.
So as I began writing today’s Guardian piece, I’d expected a narrative of cautious optimism. As I came to finishing it, the Mazars report was leaked and new figures showed little change in the number of people in inpatient units, hence the headline above this post.
The report into Southern Health by auditors Mazars – which as I write, is still not published, despite making headlines and being debated in parliament – has renewed concerns over institutional disablism, led to calls for a national inquiry and, as this piece by Andy McNicoll underlines, provoked widespread criticism over the response of the trust and its chief executive (for links to some powerful blogging and commentary, search Twitter for #mazars or #JusticeforLB).
Katherine Runswick-Cole, senior research fellow at Manchester Metroplitan University’s research institute for health and social change, suggests that until the dehumanisation of people with learning disabilities ends, inadequate care – irrespective of care setting – may linger (related issues include, for example, a hospital listing a patient’s learning disability among reasons for sticking a “do not resuscitate” order on his file).
Recent cases in supported living and residential care – non-institutional environments – reflect this concern.
In January, Thomas Rawnsley’s family will attend a pre-inquest meeting into his death. The 20-year-old, who had Down’s syndrome and autism, was taken to hospital from a residential care home in Sheffield earlier this year, but died two days later.
His mother, Paula, says: “Thomas had great empathy and compassion, he always wanted to make people laugh. If people had taken time to get to know him they would’ve found that out.”
Dismissive attitudes towards people with learning disabilities extend to their families. As Deborah Coles, director of Inquest, has said, the Mazars report only came about “because of the tireless fight for the truth by the family of Connor Sparrowhawk”.
Meanwhile, back with the grand vision – well meaning and welcome as it is – NHS England says it is working closely with regulator the Care Quality Commission to prevent any new assessment and treatment institutions from being created. But in yet more ambition vs. actuality, the Public Accounts Committee has just criticised the CQC for being ineffective.
Connor Sparrowhawk’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University’s Nuffield department of primary care health sciences, says that the Mazars report “confirms that learning disabled people don’t count in life or death” (see more on this on Sara’s blog). And this post by Chris Hatton suggests some “required reading for anyone wanting to understand the issues involved in premature deaths of people with learning disabilities”.
Hard to disagree with the conclusion of Katherine Runswick-Cole who said when I interviewed her, “the pattern is abuse, inquiry, report, repeat”.
Michael Baron, a National Autistic Society founder parent, whose son Timothy is 60, says of the concept of “a good death”: “At the age of 86, I want that for myself, but just as much I want that end of life conversation for people on the autism spectrum like my son.”
Michael, who is frequently asked to speak at conferences on the issue of ageing, autism and end of life care, has just contributed to what he calls “necessary and timely” guidance on end of life care for people with autism or a learning disability which is to be published on Friday – my Guardian piece here explains more.
The guidance from the British Institute of Learning Disability (BILD), Peaceful, Pain Free and Dignified: palliative and end-of-life-care for people on the autism spectrum, is unique due to its autism-specific focus and its step-by-step descriptions of how health and social care staff can offer better care.
“As his family, we don’t want the manner of Timothy’s death to be decided solely by others,” explains Michael. “He may be disabled and lack legal capacity but nonetheless, a ‘good death’ involves meaningful conversations [between individuals, families and staff] that acknowledge the absence of legal rights but the enduring presence of human rights. Families should be consulted [throughout end of life care] and no decision should be made which has not already been discussed, that is the minimum human right to which someone is entitled to.”
The UK is home to around 1.5 million learning disabled people, but the real figure, including the undiagnosed, may be higher. BILD says that by 2030, there will be a 30% increase in the number of adults with learning disabilities over 50 using social care (no figures exist for older autistic adults). This population faces health inequalities; the 2013 Department of Health-funded confidential inquiry into premature deaths of people with learning disabilities found that people die on average 16 years earlier than they should, because of poor diagnosis and treatment.
“We all wish for a pain free, peaceful and dignified end to our lives,” says Lesley Barcham, BILD’s ageing well project manager, “but for people with learning disabilities or autism, who may not be able to speak up for themselves, it can feel like this isn’t something they can control.”The publication stresses how autism or a learning disability affects end-of-life care. People may have verbal and non-verbal communication difficulties, for example.
Some support exists – advice on helping bereaved people with learning disabilities and the voluntary PCPLD Network (Palliative Care for People with Learning Disabilities) connecting disability and palliative care professionals – but learning disability end-of-life care has a low profile. A recent European Association for Palliative Care taskforce report on people with intellectual disabilities, describes “a largely invisible population with hidden needs”, warning of “a risk that their needs are therefore not seen as a priority, or even as a problem”.
As Ferguson says, there is a much wider question at stake. “It’s a much bigger issue about early diagnosis and early treatment planning for vulnerable individuals who struggle with self-advocacy…People with a learning disability or autism should have access to the same care that the rest of us do”.
* You can read more about how Timothy Baron and the first Society for Autistic Children – which became the National Autistic Society – in this good piece by his sister, Saskia, a journalist and TV producer.
A poetry exhibition opening today aims to challenge attitudes about learning disability and mental ill-health.
The learning disability poems are partly a tribute to the late Kim Wolf, who had Down’s syndrome; the collection includes writing inspired by her and which reflects her perspective on life.
A collaboration between Kim’s brother, former mental health social worker and poet Rogan Wolf, and disability charity United Response, the exhibition, entitled Dignity and Light, aims to “address and challenge the stigma and stereotypes and fears still associated with learning disability and – even more – with mental ill health”. As Rogan explains: “If I can see what life is actually like for you, then I am more likely to recognise and not just dismiss you”.
The poetry has been “written with, by and about people with learning disabilities and mental health needs” (United Response explains more of the background to the project here).
The poems, part of the Poems for project that supplies poem-posters for public display free of charge, are on display at Bristol’s Paintworks from today until Thursday. The collection will then be available online, as an illustrated book and, it is hoped, used in schools to raise awareness.
Rogan says of the project’s aims: “There is still this common urge to treat people who are in some way ‘different’ as dangerous aliens, or objects of scorn or mockery, people we need to keep separate. Thus, learning disability and mental ill-health are both experienced by a minority of people in our society and, though the experiences are very different, the stigmatisation both can meet is the same. It cripples lives. It shuts them off.”
While acknowledging that poems are no substitute for policy or resources, Rogan says “they can connect and can enlighten”: “Politicians keep emphasising the urgency of the need for better mental health services and better understanding – I suspect to relatively little effect. There is a crisis here and it just continues. And reports keep emphasising the need for better mental health education and resources in schools, so that children already struggling can seek help at an early stage…[the poems] can help children who are struggling recognise what might be happening and what might help.”
The collections draw on poetry written or collected over the last four decades including through Rogan’s work, personal connections, creative writing workshops and the Postcards from the Edge project run by United Response.
The poem “Other People” by Shiraz, who is supported by United Response, was part of the postcards campaign: “People are like apples or eggs. They look all right on the surface, but you don’t know what’s going on inside.”
In another poem, “A father to his son (with Down’s syndrome)”, the author, John Mclorinan, describes his child as “wonderfully irreverent, irrelevant, inappropriate, spontaneous, topsy turvey, upside down. vulnerable, perceptive, aware, eager to communicate, willing to please”.
The collections that launch today, writes United Response’s director of policy Diane Lightfoot in the illustrated book that contains them, “shine a light on those who too often remain unseen in the shadows and on the fringes of our society”.
The poem below is by Rogan, written from the perspective of his late sister Kim. The poet explains: “We often went out together. Some of the words and phrases above are Kim’s own. Somehow she had to make sense of the way people looked at her, in the street, or when she entered a public room.”
Shall we go for a walk ? When I go for a walk people look round at me.
Will you come too ?
Will you hold my hand ?
They look round at me. There’s something wrong.
Will you come too ?
Perhaps I’ll put my ear-phones in and play my music extra loud.
I am going for a walk. What’s wrong ?
Will you come too ?
Will you hold my hand ?
* See Poemsfor.org to read more or read about the exhibition opening times here.
The act, 20 years old this autumn, was regarded as weaker than hoped for by campaigners – not least because its ideals were hard to enforce – and it was replaced by the Equality Act 2010 combining all anti-discrimination legislation under one law.
Back in 1995, beginning my working life, I remember talk and action relating to the most visible aspects of the new law – the installation of ramps in the workplace, for example, and accessibility on public transport.
Recent research, such as a report by Demos and Scope, Destination Unknown, outlines the disproportionate effect on disabled people of cuts to benefits including Disability Living Allowance (DLA), Employment and Support Allowance and housing benefit. Other reforms include the closure of the Independent Living Fund (ILF) and changes to unemployment benefit.
Speaking to disability campaigners and activities for a Guardian piece recently was a good litmus test for the act’s legacy. For example, Debbie Domb, of Hammersmith and Fulham Disabled People’s Organisations Network, “welfare cuts are pushing us further out of sight to the margins of society”. Activist Wendy Perez of LDA (Learning Disability Alliance) England says disabled people are now “treated like scroungers and as people who just take”: “In the last few years it feels like things have gone backwards. There used to be a lot of hope; but now it feels like hope is gone.”
As mental health campaigner Lol Butterfield, who has blogged on this site, says: “The Disability Discrimination Act has provided protection and support for people experiencing mental health conditions but we can never become complacent. We must always be reviewing its use and strength in these times of discrimination against the mentally ill. I have witnessed many positive changes within mental health services and society over all these years. But sadly we still have a long way to go.”
Baroness Jane Campbell, crossbench peer, disability rights campaigner, chair of the All-Party Parliamentary Disability Group, adds: “I was extremely privileged to be part of shaping and helping implement the Disability Discrimination Act (DDA). This brought rights into disabled peoples’ lives, gradually replacing the culture of welfare and charity. Sadly, the momentum was never maintained as we had dreamed.
For Clenton Farquharson, disability and equality campaigner and director of community interest company Community Navigator Services, the DDA meant suddenly he was not longer invisible: “I had a right to be noticed…But 20 years on, sadly, there is still no monitoring or enforcing of the Act, leaving us to fight as individuals for our legal rights — and that is a daunting, expensive, and dispiriting process.”
The DDA still symbolises a turning point for disability rights but while it was launched in a hopeful fanfare, two decades on for many people, the legislation rings hollow.
“Today is different” is a recurrent phrase in the latest show from theatre group Frozen Light. But the refrain is more than just part of the script; the words also reflect the innovative company’s hope for young people with profound disabilities.
The plot of the accessible, inclusive and multi-sensory play involves a journey of self-discovery for the main characters, Thea (Amber Onat Gregory) and Robin (Al Watts). Both dream of escaping their humdrum hometown existence, and a series of unexpected events, explained by narrator Ivy (Lucy Garland), result in a forest adventure, which changes their lives.
Frozen Light, led by co-artistic directors Garland and Gregory, is among a handful of companies that devise productions especially for people with profound and multiple learning disabilities (PMLD). While cultural access and inclusion have improved in recent years (projects like Autism Friendly Screenings are part of a burgeoning movement), the arts barrier remains down to people with complex physical and cognitive issues.
The group is currently on a nationwide tour of high street theatres and arts spaces. Garland and Gregory say many of their audience members have never before been into a mainstream theatre: “We want to enable people who rarely attend high street arts venues to experience the theatre. With our 26-date tour, we hope to reach as many people with PMLD as possible…We want people with profound needs to be more visible in their local areas.”
Performing to a maximum of 12 people – six people with disabilities, each supported by a carer, the three-strong cast accompanies the audience from the foyer into the performance space, ensuring a smooth transition into the theatre environment. One-to-one interactions include actors singing or talking directly to an audience member, or offering a prop to be touched. The specially composed music is pitched at an appropriately sensitive level.
In the audience for the opening performance of the tour at the Gulbenkian in Canterbury, Kent, I was drawn into the show’s multi-sensory world; swathed by leaves with a warm breeze on my skin, I could smell forest fruits and the scent of a wood after rainfall (I’m not taking poetic liberties – this is a factual description of how the show sparks your senses). The actors captivate the audience with the use of simple props and, I won’t spoil it, but the combined effect of helium balloons, LEDs, torches and white discs is quite hypnotic.
It was noticeable how much time the actors spent with each person, adapting their interactions – language and behaviour – according to need, ability and interest. One young boy who particularly enjoyed the feel of rain drops on his hands was allowed time to explore the sensations and appearance of drizzle. His joyful reaction was priceless.
Given I write and read so much about (warning: social care jargon alert) “choice and control” and “person-centred planning” or “personalisation” (ie when the unambitious “choice and control” box ticking basically means offering someone the choice between water or tea to drink..) – this was truly “person-centred” performance.
I did some editorial support work the company some months ago and, having come across the show in its conceptual infancy, I was blown away – almost literally, given the multi-sensory context – to see the fully fledged performance (a note of transparency here: this blogpost is mine and mine alone, written in my own time and, like every post on this site, independent, unsolicited and unpaid for).
Talking to parents and carers in the foyer after the show, several told me how their young people are starved of theatre that is tailor-made with complex needs in mind, but which also manages to be high quality and pitched at the right level for the audience (ie unpatronising).
One father told me his visually impaired son’s attention span was short, but he was moved to see the teenager captivated by sound, scent, taste and touch during the performance.