Season’s greetings to everyone – this is me with my sister Raana, thanking everyone who’s collaborated on stories, projects and posts this past year – here’s to more of the same in 2019.
Big thanks also to all of you who’ve supported or helped publicise the crowdfunded book I’m editing, Made Possible, about the talents of people with learning disabilities. It’s
partly inspired by my sister, who has the learning disability fragile X syndrome, and aims to shatter the lazy stereotypes we have about learning disability.
Here’s hoping 2019 will bring more action, instead of just more rhetoric, as I’ve written before, and the people who have to spend the festive break in inpatient care are reunited with their families soon.
A new heritage project aims to dispel misconceptions about learning disability and the lives of people who lived in long-stay institutions. The charity CASBA (Citizen Advocacy South Birmingham Area) spent a year collating stories and archive material relating to Birmingham’s Monyhull Hospital. Myth and rumour about the hospital was rife; it was referred to as the local madhouse and the term ‘Mony’ was used as a playground insult at local schools. In what is Birmingham’s first learning disability heritage project, the free event From Institution to Community, runs on Saturday October 6th.
Guest post by Joe Peacock, heritage project coordinator, CASBA
Roland Clewley was 16 when he was first admitted to Monyhull Hospital, a long-stay institution for people with learning disabilities. It was 1966 and before Monyhull, Roland been in a pupil referral unit in North Wales for 18 months and had grown up in a care home in South Birmingham. He quickly grew to hate being locked up.
Roland spent almost 15 years in institutional care.
Roland says: “It was okay at first, but I wanted to get out, you see. I wanted my own place – a flat or something. I said that to them, but they said; ‘They’re all the same, just like you’ so I started running away.”
This was not the easiest thing to do, but he remembers: “I got through the window and then went down the pipes and ran off along the canal. It was dark down there and you couldn’t see what you were doing. We didn’t get very far, then we got picked up by the police. They put us in a van and put us in a cell for a few hours until Monyhull picked us up.”
Such attempts weren’t looked upon kindly by the hospital. Contrary to local myths, there was no alarm that went off when someone ran away, but they were punished on their return. “They put me in a side room. It was like a cell. It was a bare room with just sheets and blankets on the floor to sleep on. The first time, I did a week in there, then the next time two and then three weeks at a time.” He was let out to go to the toilet and to eat, but it was a severe punishment for someone who just wanted his freedom.
He was then sent to a stricter institution called Moss Side: “Terrible, that place was” he recalls; “You were locked in all the time. You could go out in the grounds, but there were walls all the way around – it was like a prison. I was there for nearly eleven years.” In fact, Moss Side was a high security psychiatric hospital and later merged with another similar institution to form Ashworth Hospital. Roland is reluctant to disclose much of his experiences there and it is hard to imagine how tough it would have been for him. Roland was then sent back Monyhull, and it must have been quite a relief in comparison.
“It was a bit better second time – it changed a lot. When we used to be on the ward it was a male ward and you’d have male staff, but the next time I was there it was all mixed – you’d got male and female staff working there.”
He also felt more optimistic that he would be allowed out with the increased emphasis on care in the community and deinstitutionalisation in the 1980s: “What else changed is that they were taking the patients out of there. Before, you don’t know how long you’re there for, or anything like that. I thought I was going to be there until I was about 80.”
He began to be given more responsibilities, helping the physiotherapist to get patients to appointments and was even paid for working with the porters; collecting laundry from the wards. Some of the porters befriended him and they would socialise as well as work together.
He was quite a decent sportsman, too, who won a snooker tournament and has a photograph on his wall of him being presented with the trophy to remember it by. There was a table in his ward and he’d play with anyone who was up for it or just practice on his own. He also played table tennis, football and was keen to try any other activities on offer.
Perhaps, one of the most surprising things he did, due to his close work with the physiotherapist was to go skiing in Italy. “Went for a week. I kept on standing up when I fell over all the time. You want to do it – it’s a laugh.”
Another way in which he’d try to beat the boredom of institutional life was to sneak off to the local pub, the Cartland Arms. More often, though, he remembers that they would smuggle cans of cider in from a nearby shop and sit in bed drinking those after lights out.
In 1980, he was moved out of the hospital into a hostel and then into a flat where he still lives. Ironically, for a man desperate to escape the hospital, his flat overlooks the site of the former institution he was in. Surprisingly, he continued going back to Monyhull to work with the porters them even after he’d moved out and right up until the time it was closed down and demolished. He retained his income, was fed and had a social life.
Now, in his late 60s, Roland seems happy enough with his life, although when I asked when he’d last been on holiday, he replied that it was 25 years ago. With limited mobility, he must be in danger of becoming more and more isolated.
The biggest shame of his life for me, though, is all those wasted years when he was locked away. With the right support and encouragement, he was capable of doing so much more.
• Joe Peacock is heritage project coordinator at learning disability advocacy charity CASBA
• CASBA’s From Institution to Commununity is at Monyhull Church from 1.30pm on Saturday October 6th and you can watch a trailer about the project here
Being able to do her own washing and having responsibility for her personal possessions symbolised the freedom Michelle Stevens* wanted but was denied in institutional care. Stevens features in my latest Guardian article (screenshot above). Her severe mental health problems meant she was in and out of residential care and mental health wards for a decade. She recalls staff shouting at her and living circumstances that were “very closed up and not nice at all”.
Today, however, Stevens says she is “much happier and freer”. She has a bedroom in a large double-fronted Victorian house – and she loves the garden at her supported living home in West Norwood, south London, which is run by social care provider Certitude. “[It] is cleaner than other places I have been, and has nicer facilities,” says Stevens.
She enjoys socialising – with the 11 other residents and locally – and for the first time in three years, she does her own washing and is trusted with her belongings.
The women-only housing is designed for those with enduring and complex mental health issues who may be stuck in restrictive environments. Certitude provides support while First Priority, a housing association, manages the tenancy agreements. The home opened in September 2016 and residents, who are mostly in their 30s and 40s, benefit from individualised support that is rarely offered in residential or inpatient care.
I’m really grateful to all the women who shared their experiences for the story and talked about the “good road ahead”, as Michelle put it, which now seems to be ahead of them. Read the rest of the article here.
Barriers for physically disabled people range from blocked wheelchair ramps to buildings without lifts. The cluttered metropolitan environment, meanwhile, can be a sensory minefield for learning disabled or autistic people.
My Guardian report today looks at some of the most innovative city-based developments in the UK, Europe, Asia, America and Australia. These include skyscrapers built using universal design principles to the retrofitting of rails, ramps and lifts in transport services or digital trailblazers that help disabled people navigate their city.
For example, mapping apps make navigating cities a doddle for most people – but their lack of detail on ramps and dropped kerbs mean they don’t always work well for people with a physical disability. The University of Washington’s Taskar Center for Accessible Technology has a solution: map-based app AccessMap, allowing pedestrians with limited mobility to plan accessible routes.
Wheelchair user John Morris, who runs advice site Wheelchair Travel, says: “Seattle’s geography, with changes in elevation, sidewalk and street grade on a block-by-block basis, often make it difficult to navigate in a wheelchair. AccessMap combines grade measurements with information on construction-related street closures and the condition of sidewalks to plot the most accessible course, pursuant to the user’s needs. I would like to see AccessMap included as part of a holistic accessible route planner that includes the city’s public transportation services in building the most effective journey. Pairing AccessMap with the city’s route planner tool or with transit directions from Google Maps would make getting around Seattle easier for people with disabilities.”
Steve Lewis, a 69-year-old manual wheelchair-user who has helped co-design the Seattle technology, adds: “I spend a lot of time in downtown Seattle and am well aware of what a barrier the hills are to wheelchair travel. I have learned from experience how to navigate the downtown corridor. The best routes for someone in a wheelchair will take advantage of elevators in buildings entering on one street and exiting several stories higher on the adjacent street. AccessMap is an effort to automate and make accessible the knowledge I have acquired through experience. It currently shows graphically the steepness of the terrain. The Taskar Centre is involved in a major effort to automatically display the best routes for wheelchair users with knowledge of elevators and mass transit including the hours they are available.”
Through its related OpenSidewalks project, the Taskar Centre is developing a system to crowdsource extra information like pavement width, or the location of handrails. Nick Bolten, AccessMap and OpenSidewalks project technical lead, says: “AccessMap tackles a neglected problem: how can you get around our pedestrian spaces, especially if you’re in a wheelchair? AccessMap lets users answer this question for themselves, and OpenSidewalks will help add the information they need.”
In another US-based project, this time in Sonoma, California, a $6.8m supported-housing project, Sweetwater Spectrum, is a pioneering example of autism-friendly design. Autistic people can be hypersensitive to sound, light and movement, and become overwhelmed by noisy, cluttered or crowded spaces. However, the scheme is designed according to autism-specific principles recommended by Arizona State University. The complex, which opened in 2013, includes four 4-bed homes for 16 young adults, a community centre, therapy pools and an urban farm – all designed by Leddy Maytum Stacy Architects.
Noise is minimum thanks to quiet heating and ventilation systems and thoughtful design – like locating the laundry room away from the bedrooms. Fittings and décor reduce sensory stimulation and clutter, with muted colours, neutral tones and recessed or natural light used rather than bright lighting. Marsha Maytum, a founding principal at Leddy Maytum Stacy, says the design “integrates autism-specific design, universal design and sustainable design strategies to create an environment of calm and clarity that connects to nature and welcomes people of all abilities”.
And there’s another great project from Leddy Maytum Stacy in nearby Berkeley, the Ed Roberts Campus, “a national and international model dedicated to disability rights and universal access”. The fully accessible building, named after the pioneering disability rights activist Ed Roberts, is home to seven disability charities, a conference, exhibition and fitness spaces, plus a creche and cafe. Features include a central ramp winding up to the second floor, wide corridors and hands–free sensors and timers to control lighting.
No city is wholly accessible and inclusive, but there are groundbreaking examples leading the way – and we just need more of them.
This was the question debated by a group of young women in diverse roles in the construction industry for an article I’ve just done for Construction Manager magazine.
According the Office of National Statistics, women account for just 12.8% of the workforce. Then there is the gender pay gap – the construction and building trades’ supervisors have the highest in the sector, with men paid 45.4% more than women. Little wonder then that the number of women in construction has dropped by 17% in the last 10 years, compared to a 6.5% drop for all workers in the industry.
You can read the full piece to see why it makes economic as well as ethical sense to increase the numbers of women in the industry. Among the topics debated were the fact that more action is needed to break the stereotype that construction is a man’s industry.
The roundtable heard that issues such as a lack of female toilets or sanitary bins are common. As one participant said, if a woman working on site has to leave the project several times a day to find a public lavatory, there is a strong productivity case – as well as a human rights case – for installing facilities.
Thanks to all who took part in what was a fascinating and determined debate – and all power to these strong young women and their efforts to shake up a male-dominated sector.
Guest post by Tracy Fishwick, chief executive of Transform Lives
Leeds Community Homes is striving for a people-powered community housing revolution, placing the new organisation at the cutting edge of housing practice.
The not-for-profit group has raised £360,000 to invest in 16 permanently affordable homes through community shares (a type of share capital called ‘withdrawable shares’ issued by co-operatives or community benefit societies). With the first tenants due to move in by next April, the organisation’s #peoplepoweredhomes campaign is an innovative way to create housing developed by local people, to meet the housing needs of local people. The project wants to create 1,000 affordable homes over the next decade.
People-focused housing solutions are at the heart of the People’s Powerhouse event taking place next month. The housing group’s work in Leeds is the kind of positive story of local change that we hope will inspire delegates to recreate similar projects in their own communities. More good practice like this is vital at a time of chronic housing shortage, with housebuilding falling almost 100,000 homes per year short of achieving the government’s ambition.
You may have read about the People’s Powerhouse which was launched in February and originally billed in the press as “a rival ‘northern powerhouse’ conference to one that advertised 15 male speakers but no women and just 13 of all 98 listed speakers were women”.
Leeds Community Homes, Plus Dane Housing and my own company, Transform Lives, are just some of the organisations taking part. We hope the People’s Powerhouse will help create a dialogue about inclusive, good growth, and its potential to transform communities and lives across the North of England.
Other work worth replicating includes Give Get Go, which Transform Lives collaborates on with a group of housing organisations. The initiative supports social housing tenants into work – connecting unemployed people to employers through volunteering and mentoring, growing skills and confidence and creating jobs. Key to the project’s success is bringing civic institutions and leaders together for the first time to work collaboratively in Liverpool, including the University of Liverpool, Everton FC and the National Trust.
We also work with Plus Dane Housing on its Waves of Hope Big Lottery programme, which aims to tackle homelessness and other complex barriers to work. In just two years, the project has supported 236 people, 83% of whom say their rough sleeping has been reduced. And 67% report a reduction in substance misuse. Both Plus Dane Housing and our other partner, the University of Liverpool, will be showcasing this work at the People’s Powerhouse, underlining the difference we can make when we find good ways of working collaboratively and locally.
Our hope is that we will build a long-term movement for change that supports good and inclusive growth in the North with a particular focus on how people are the key to growth. The aim is to include all sectors and sections of the community, harnessing the combined skills and leverage of the public sector, voluntary, community, civic leaders and business.
As Lord Victor Adebowale, chairman of Social Enterprise UK and chief executive of social enterprise Turning Point, says: “’People’s Powerhouse’ perfectly reflects our vision for economic investment in the North of England.” Social enterprises often find innovative solutions to social issues and as Lord Victor, a People’s Powerhouse keynote speaker, adds: “We cannot allow anyone to be left behind. Investment in the North must be inclusive and must be used to support communities as well as businesses, adding value to the lives of real people.”
* The People’s Powerhouse event takes place on Wednesday 12 July from 10am-4pm at Doncaster Rovers Football Ground. For more information and to register see the website. Discounts are available including for young people and for small enterprises and charities.
Encouraging dementia-friendly design is an important part of the debate and some of the innovative developments in this area are a welcome contrast to the lack of progress elsewhere.
Care and support charity the Abbeyfield Society has unveiled a £9m new development, Abbeyfield Winnersh, in Berkshire. Early images give one an idea of how design can be used to support people with dementia. Granted, the images look a bit eerie on account of the noticeably absent people, but they at least offer a glimpse of what the new developments in dementia design can offer.
Each of the 60 residents in Abbeyfield Winnersh will have their own ‘window’ next to their front door (pictured above) – effectively a memory box with instantly recognisable, personal items to help them identify their own door.
All bedrooms – all leading onto an outdoor space – are arranged in six, circular clusters of 10 ‘households’ aiming to offer a more homely, community feel.
The furniture and furnishings have been chosen to reduce anxiety with, says Abbeyfield “calming colours and textures chosen to stimulate the senses and promote reminiscent memories”.
Facilities for family and friends include a playground for young children, above.
Involving the friends and relatives of care home residents in the life of a care home is a crucial and not often acknowledged issue in dementia support. As a previous post on this blog by Kate Murray stresses, the importance of helping children understand and be aware of dementia cannot be underestimated.
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
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”.
Ports of entry like Kent and Croydon look after a disproportionate number of child asylum seekers, and government funding doesn’t cover all the costs, as I explain in a piece on the Guardian’s social care pages.
Many concerns were raised at the National Children’s and Adults Services Conference in Bournemouth in October, and are reflected in recent research from Brighton University. This describes “an extremely uneven distribution” of unaccompanied minors. A Freedom of Information request reveals that seven out of 150 English councils look after 43% of all unaccompanied asylum-seeking children.
In Kent, there are 1,384 unaccompanied asylum-seeking young people, including 982 under-18s; more than a third of all looked-after children.
Peter Oakford, cabinet member for specialist children’s services says: “It’s been the most difficult year Kent county council has ever experienced regarding unaccompanied asylum seeking children … This places enormous pressures on staff in services within the council, foster carers and education services as well as all our partner agencies like the police and health.”
Amid the debate about dispersal schemes and funding shortfalls, Kent’s latest figures reveal the human cost; 180 children do not have an allocated social worker and are still waiting for a full assessment.