Tag Archives: third sector

In limbo: life for people with learning disabilities moving out of hospital units

Today's Guardian article
Today’s Guardian article

The government promised four years ago to move people from treatment and assessment units following BBC Panorama’s exposure of abuse at the privately run Winterbourne View.

The preventable death of 18-year-old Connor Sparrowhawk, who drowned in a Southern Health trust unit in Oxfordshire three years ago, and the subsequent Justice for LB campaign, further fuelled demands for action and accountability over the treatment of learning disabled people. In October, NHS England and council leaders set out a £45m plan to close England’s last NHS hospital for people with learning disabilities, plus up to half the 2,600 beds in the units.

But according to the latest figures, in June more than 2,500 people were still languishing in such units as the pace of change is so slow.

My piece in the Guardian today focuses on what happens to people as they are moved out of these secure hospital facilities and back “home” – “into the community”.

Some, like Ben Davis, who has autism and complex needs, are passed from pillar to post as suitable local support just doesn’t exist. Family-led research published today by charities Bringing Us Together and Respond highlights the problems for people like Ben.

Ben was admitted to an assessment and treatment unit (ATU) miles from his home after his first supported living placement broke down. After the ATU, he moved to a newly built flat nearer his family but that support has now also broken down. He has to move again, into temporary accommodation, while care commissioners organise the next option.

When I interviewed Ben’s mother, Catherine, she was both eloquent and outspoken as she described how the human rights of her son were being eroded after he was repeatedly failed by the very system designed to support him.

This is where we are today. Upwards of 2,500 people stuck in inappropriate, discredited care, and the strong will to get them out is being undermined by the lack of a clear way.

And meanwhile, many parents – every single one of whom has spent years relentlessly fighting for the right support – feel they cannot always openly challenge the authorities, such is the fragile and often hostile relationship between families and commissioners of care.

* Names and details in the article have been changed

* Read the full Guardian piece here and the check this for reports by Bringing Us Together and Respond on which the article is based

Campaign for the capital’s first sensory bus

Kay Alston's campaign for London's first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)
Kay Alston’s campaign for London’s first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)

Responding to a lack of relaxing, interactive spaces for disabled people, Londoner Kay Alston has decided to launch her own campaign for the capital’s first ever sensory bus.

The 32-year-old, who has moderate learning disabilities, is backed in her social enterprise project to create a mobile sensory room by Outward, the care and support charity that runs her supported living in Camden, north London.

Kay needs to raise £28,245 towards creating the project. A sensory room is a relaxing environment designed to focus on specific senses through special objects, and sound and visual effects. It enables people to interact with, and control the environment around them and is particularly beneficial for people with sensory impairments, complex needs and those with autism.

Kay Alston in her sensory room at home in London.
Kay Alston in her sensory room at home in London.

The idea is that people would pay a minimal fee to use the bus, with the money being reinvested into the social enterprise. The accessible vehicle would include elements like interactive carpets, star ceiling and LED Projectors.

Here, Kay explains why her project is so vital:

“Someone once said that sensory rooms have effects of taking medication without taking the medication. The room would be a stimulating place for people, and it could help to reduce anxiety and stress, and help to improve their concentration. People with disabilities should come to sensory rooms because it’s fun and fascinating.

“The sensory room on a bus will be an interactive and a calming environment. It will have an interactive floor, platform swing, bubble tubes and light projectors with music playing in the background too. The bus will be accessible to wheelchair users. It’s purpose would be to calm and stimulate people, by giving them an interactive and visually stimulating environment.

My idea was inspired by the Autism Show. I went to in 2014 where I got a sensory tactile book, and I have been to other sensory rooms and they’re lots of fun. I have been to day centres and nursing homes where people with high needs simply get parked on the side and have nothing to do. Outward was running a Dragon’s Den competition and staff who already knew of my idea encouraged me to enter. Outward invested in my idea and said they will help me set it up. Outward staff spoke to me about the online fundraising campaign, and helped put it online and I handed out over 100 leaflets to places I shop in, people I know and places where I use their services. It’s also nice to be a little famous.

I hope the bus will be a fun and interactive place for people to learn new things. People with high needs find it difficult to get out, and can’t easily go to a place like a sensory room. Everyone can do what they want and behave in a way where they won’t be judged, sometimes I walk along the street and laugh and people look at me funny and it makes me think I want more control. In a sensory bus I could have more control.

I want to run it through a social enterprise to make it bigger and better, to add new inventions and more equipment to use. The bus will drive around to different places to give more people a chance to experience and use it.

There isn’t a sensory bus in London, and there aren’t many sensory rooms in London. The sensory rooms in London aren’t properly maintained, so I have only been to sensory rooms outside of London. But some people can’t travel that far or outside of London, so a sensory bus would make it easier by going to them. People haven’t thought of a sensory room in London to be on a bus, and there isn’t a sensory room with an interactive floor.

The most difficult thing so far has been getting enough people to pledge as I don’t have many connections. But it is a unique idea because there isn’t a sensory bus in London. If we could make this happen it would be a great achievement for me and would help lots of people in London.”

Arts festival offers a focus on equal opportunities for disabled young musicians

Performers from integrated circus company Extraordinary Bodies will be at the Fast Forward Festival next week. The event will highlight arts accessibility and, hope campaigners, boost calls for a new centre for training for disabled young musicians.
Integrated circus company Extraordinary Bodies performs at the Fast Forward Festival next week. The event will highlight arts accessibility (pic credit: Rachel Lambert).

Across the country, there are a dozen government-funded centres for advanced training, providing specialist education for young musicians. But there is no such equivalent for their young disabled counterparts.

However, it is hoped that an arts festival, which opens next Friday, will strengthen a campaign for the first ever such facility for musicians with special education needs and disabilities.

Next week, Colston Hall in Bristol will be home to the second Fast Forward Festival, which champions accessible music making and arts. Performances include those from the Paraorchestra, the world’s first professional ensemble of disabled musicians, founded by conductor Charles Hazlewood in 2012. Integrated circus company Extraordinary Bodies is another headliner.

Extraordinary Bodies performance of Weighting Photo credit: Richard Davenport
Extraordinary Bodies performance of Weighting Photo credit: Richard Davenport

The return of the festival, which was launched last year, reflects the venue’s aim to champion arts accessibility and to contribute to a shift in perceptions of disability. As part of next week’s event, Colston Hall, run by Bristol Music Trust, is holding an exhibition involving the One Handed Musical Instrument Trust (the trust’s aim is to remove the barriers to music-making faced by disabled people).

Ruth Gould, artistic director of Liverpool based disability arts organisation DaDaFest, summed up the situation when I interviewed her recently, highlighting how negative assumptions about disability linger on in popular culture (“Lack of training, lack of educational opportunities, lack of work, lack of media and arts representation, demise of independent support, cuts in mobility allowance and personal assistance”.)

Colston Hall, run by independent charity Bristol Music Trust, wants to be home to the UK’s first centre for advanced training for disabled young musicians, both to encourage more opportunities for them to get qualifications and pursue a career in music, or just to be able to enjoy music. The aim of the campaign for a new centre, launched at the House of Commons earlier this year, is for the centre to train 2,500 young people from across England, and set a national benchmark for music accessibility.

Musicians at Colston Hall, Bristol
Musicians at Colston Hall, Bristol

The centre would form part of a £45m revamp of Colston Hall – Bristol council, the government and Arts Council have committed a total £25m so far – with new classrooms, state-of-the-art technology lab. The technology would include cutting edge instruments, such as those played by the flicker of an eye, or software that uses facial movements to control music.

Bristol Music Trust currently trains young disabled and special needs musicians, but the redevelopment would add new classrooms and a state-of-the-art technology lab will set new national accessibility standards. The venue, currently not accessible to disabled people, is due to close next summer for redevelopment; the plan is for it to reopen in 2019, fully accessible and home to the UK’s first specialist centre for the training of young disabled musicians.

Young pianist Ashleigh Turley at the launch of a campaign to create a new training centre for talented young musicians with disabilities
Young pianist Ashleigh Turley at the launch of a campaign to create a new training centre for talented young musicians with disabilities

The area is already home to the South-West Open Youth Orchestra which is the UK’s only disabled-led regional youth orchestra. The Paraorchestra also recently relocated to Bristol. The addition of a centre for advanced training at Colson Hall, supporters hope, would turn the region into a beacon for accessibility and equal opportunity.

* On the same topic of accessible arts, integration and young people, I recently came across an innovative music project that aims to raise awareness about visual impairment and sight loss. Musician Marie Naffah, a 23-year-old singer/songwriter, was inspired to explore blindness after her grandmother developed age-related macular degeneration. Marie wrote, recorded and performed a song while blindfolded and then collaborated with a group of six blind and visually impaired musicians to record the track, ‘Blindfold‘. Disability is not an obstacle to creativity or talent, as Marie says in a TEDx Talk at the Courtauld Institute that went live this week.

What an ex-gangster taught me about standing up to stigma

Reformed hardman Chris  (centre) with Lol and his partner Clair at the Ley centre
Reformed hardman Chris (centre) with Lol and his partner Clair at the Ley centre

What do a mental health nurse and an ex-gangster have in common?

That was the question I was asking myself as I visited the Ley Community, a residential drug and alcohol rehab centre, with Chris Lambrianou, former henchman to the Kray twins.

I visited the Ley at the invitation of Chris, who volunteers at the centre; his life now is about as far removed from his past as is possible. The Krays ruled London’s gangland in the 1960s and were imprisoned for murder. Chris was present on the night Jack ‘the hat’ Mcvittie was stabbed to death. His presence and silence that night in naming Reggie Kray as the murderer resulted in Chris being jailed for 15 years.

Whilst in prison Chris, now 78-years-old, reflected on his life and the mistakes he had made. He wondered how he had found himself to be in such a position. Like many other prisoners Chris ‘found’ God. But unlike many others who use this as a cynical ploy to seek freedom early, Chris knew his life had to change and was determined to make that happen. He wanted to make a difference to others. On his release in the early 1980s he began working at the Ley. His voluntary work there includes accompanying people to court and generally giving them the encouragement to try and turn their lives around.

I had read about Chris’s work in his autobiography, The Kray Madness, and contacted him to discuss our mutual interest in helping people to turn their lives around. After a few phone calls, he invited me to Oxfordshire to a look around the Ley. The centre initially struck me as quite regimented, but it has to be that way to encourage the residents to make the efforts to come off drugs and show self discipline and determination. There is a strong emphasis on group discussions, peer pressure and support, openness and self responsibility.

We have different backgrounds and seemingly different areas of interest – me with mental health campaigning and Chris supporting the rehabilitation of people with addiction issues. Yet we both have a desire to use our life experiences to make a positive difference for others.

Chris has an influential role among young men because of his Kray connections, with much recent interest in his life thanks to the Tom Hardy film Legend – Chris advised on the movie. Chris is not volunteering as much at the Ley due to his age, but when he does he accompanies people to court, and generally encourages them to try to transform their lifestyles and behaviours. They see him as a positive role model and he can relate to them.

Supportive networks are vital to recovery and a focus on relationships is the theme of Mental Health Awareness Week next week. Social contact is the best way of breaking down barriers, misunderstanding, and ignorance of mental illness. It is important for us to have good relationships for our own mental health in the sense of talking and listening to each other.

My own work, for example, has been aimed at encouraging men to seek help early for mental health issues and self-harm. My most recent media advisory role was advising the storyline involving the ‘macho’ character Zak Dingle in TVs Emmerdale during his depression storyline.

Tragically we have very high rates of self-harm among young men in my native north east. Much of this is a consequence of the damaging ‘Big boys don’t cry’ attitude among men, and the damaging misperception that men expressing their feelings is a sign of weakness. This is something Chris would relate to in his own work.

Challenging stigma and addressing feelings of shame is something Chris and I share as a common goal.

Through social media, Facebook, and social contact, we are both starting to chip away at the damaging defensive layering common to all tough guys. We are trying to convince men who think they are somehow immune from mental illness that nothing could be further from the truth.

We have discussed the idea of a joint project, perhaps a book, to try to reach out to men in particular who self harm and feel stigmatised because of having mental illness. Together we are determined to make a difference; we have more in common then we think.

* You can find Lol on Facebook

The disability activist fighting injustice

Social policy professor Peter Beresford once described Doug Paulley, who I interviewed for today’s Guardian, as as a “caped care home crusader”.

Paulley is known for his wheelchair priority case against transport company FirstGroup, hinging on whether bus firms are required to force people with pushchairs to vacate wheelchair spaces.

His initial win was overturned on appeal and is due to be heard in the Supreme Court in June in a move that could, as campaign group Transport for All says, “set a legal precedent for enforceable priority over wheelchair space”. The Equality and Human Rights Commission (EHRC) supports Paulley’s case, and his awareness-raising helped win him the Sheila McKechnie Foundation award for campaigner of the year 2015.

Paulley has won almost all the 40 disability discrimination cases he has launched over the last decade. Paulley, who lives in a care home and uses a wheelchair, is an activist, not a lawyer. He has represented himself in all but three actions, challenging equality and accessibility barriers in organisations from pub chains to supermarkets and theatre firms. He has won around £10,000 in compensation over 10 years, he estimates, by bringing complaints under the Equality Act in the small claims court.

He welcomes last weeks damning Lords select committee report on the Equality Act 2010 and disability, which chastises the government for failing disabled people in its duty of care. Paulley was invited to give evidence to the select committee and is quoted in the report.

He answers critics who claim he’s motivated by money or that he enjoys being “a bully” – in fact he often donates damages to activist groups and stresses that the compensation amounts involved are “dwarfed by legal fees” – a reference to high-earning lawyers who represent service providers (the small claims court maximum award is £10,000 but discrimination-related claims generally fall between £600 and £6,000).

The full piece on Paulley, who volunteers at a local Oxfam and has fundraised for disability charity the Calvert Trust, is here.

How cuts affect disabled people: “We’re going backwards – and fast”

Public artwork from DaDaFest in January (photo: DaDaFest)
Public artwork from DaDaFest in January (photo: DaDaFest)

Coverage of the budget has been dominated by a focus on George Osborne’s headline-grabbing sugar tax, although it’s not quite enough to detract from the unfair deal for the embattled social care sector (check Twitter for #carecrisis to get a flavour of the feeling). The chancellor’s other measures are regarded as the ‘last straw’ for disabled people, already being hit by cuts, and he is now under fire from rebellious backbenchers opposing the £4.4bn cuts to disability benefits.

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.

Last week, as something of a curtain raiser to 2016’s two-week festival in November, DaDaFest held a seminar on the barriers to disability arts for black and minority ethnic people (BME). The awareness raising event complemented DaDaFest’s play, Unsung, recently performed at the Everyman theatre, based on the life of 18th century blind Liverpool poet, abolitionist and disability rights pioneer Edward Rushton.

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.”

Recent figures show just 2% of the arts workforce is disabled, an increase of 0.2% on previous year. With 19% of the UK registered disabled and the employment rate among disabled people at 46% (around 30% lower than the rate among able bodied people), this highlights the poor representation of disabled people in the arts.

You can read the rest of the interview here.

DaDaFest 2016 takes place in November.

Why the NHS needs more district nurses

The ageing population combined with the ongoing drive to keep people at home, not in hospital, reinforces the vital role of community nursing.

Yet as figures from the Royal College of Nursing show, the number of community nurses working in the NHS in England have almost halved in a decade; from 12,620 in 2003 to 6,656 in 2013.

As my piece on the Guardian website today explains, community nurses can be employed by NHS trusts, GPs, charities such as Dementia UK or private providers delivering NHS services. However, their numbers are falling. The decline might be attributed to primary care trusts transferring provision to other organisations under the government’s Transforming Community Services programme because those nurses moving to non-NHS providers are not captured in relevant workforce data.

The fall in numbers coincides with healthcare reforms that make their role even more important. “District nurses will be likely to play a significant role in the NHS reforms, particularly around new models of care that shift more care into the community,” according to Rachael Addicott, senior research fellow at health thinktank The King’s Fund.

Read the full piece here.

Equal rights at the end of life for people with autism

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.

How arts therapy can support people with dementia

Working with memory triggers in a reminiscence arts session (photograph: Age Exchange)
Working with memory triggers in a reminiscence arts session (photograph: Age Exchange)

By 2025 there will be one million people with dementia in the UK, according to the Alzheimer’s Society; a project I reported on today for the Guardian online is proving the impact of arts-based therapy on people with the condition.

Take Eddie (not his real name). When he first met arts practitioner Jill, from London-based arts group Age Exchange, he was withdrawn and uncommunicative.

Eyes downcast, head bowed, hands clasped and legs crossed; Eddie, an introverted wheelchair user, had been in a dementia care home for a decade when he began sessions Jill.

Over six weekly reminiscence arts sessions – work that explores memories using creative activity – Jill noticed how Eddie became “awake, sitting upright in his wheelchair, trying to talk, being better at regulating his mood and behaviour … He felt safe enough to allow himself to express some of these stored up energies and feelings through movement and making sounds which freed him and allowed him to start opening up and connecting with people.”

A simple gesture after the final session – previously unimaginable – reflected the transformation. Jill recalls: “I was very touched as we said goodbye; he extended his right hand towards me, I took it and we shook hands.”

My piece today highlights the specialist practice of reminiscence arts; Eddie was among 200 older people involved in research into the method in Lambeth and Southwark, evaluated by experts at Royal Holloway, University of London. You can read the rest of the piece on the Guardian’s social care network.

The role of siblings in the care of disabled adults

Anila Jolly and her older brother Sunil pictured recently
Anila Jolly and her older brother Sunil pictured recently

I’m so grateful to Anila Jolly (pictured above, with her brother Sunil) for speaking so frankly about her relationship with her sibling.

As she says, siblings of disabled adults are “largely invisible” to care providers, but their “insight and perspective can be valuable”.

There’s more on these issues in a piece on the Guardian’s social care network today; 1.7 million adults in the UK have grown up with a disabled brother or sister but campaigners say their support needs and caring role are overlooked.

My piece today focuses on the work of Sibs, the UK’s only charity for siblings of children and adults with a lifelong learning disability.

Sibs’ call for greater recognition for this comparatively invisible group is timely given the next tranche of welfare cuts, says its chief executive Monica McCaffrey – “people who don’t have critical or substantial need will have little or no support … siblings will have to ensure people are safe and we want them to have a voice within adult social care.”

In addition, the role of siblings should be seen in the context of Carers Week next week and the are growing calls for families to be fully involved in the care of disabled relatives (take the campaigning LB bill , for example).

You can read more here about siblings’ distinct role and how care providers and commissioners often underestimate their contribution.