Over 20 years after the Mansell report deploring the damage being done by out-of-area placements was published we are still hearing about scandalous cases of abuse in institutions. Rosemary Trustam attended two events aiming to bring about a united movement to bring about lasting change.
A new grassroots energy has sprung up against the abuse in institutions, prompted in particular by the #JusticeforLB campaign. An independent review, fought for by the family, found that the death in the bath of Connor Sparrowhawk known as LB (Laughing Boy) was preventable. He was in the unit for 107 days so the family started the 107 days campaign to ensure that individuals and services are held to account and that things are put in place to ensure this can never happen again. They invited people and agencies to adopt a day with an activity to highlight awareness and raise funds. (For details of the objectives go to: http://107daysofaction.wordpress.com/what-does-justiceforlb-look-like/ )
The 107 days campaign also drew attention to other heart-breaking cases: Nico who choked to death the summer before Connor’s death in Southern Health Unit in Oxfordshire. Nico needed good health support for his complex needs in the community – the speech therapy support for his swallowing ceased when he moved from children’s to adult services; 11-year old Josh from Cornwall admitted to a unit in Birmingham and two years later was no nearer to returning to a nearer locality until publicity of his family’s over 500 mile trip at weekends to visit him led to Norman Lamb asking the NHS and local authority to work together for a solution.
Recently we’ve heard about Claire, a young woman from Swansea, whose family got an injunction to stop her being moved to Brighton but lost the court case and the Health Board has moved her at short notice and without warning the family, saying they couldn’t cope with her challenges. http://www.bbc.com/news/uk-wales-south-west-wales-28611500
It was 1993 when the Mansell reported on the damage being done by out-of-area placements. It advocated ‘exemplary models’ and yet, despite all the progress made and the move towards ordinary community living and personalised support, we see backwards movements. https://www.kent.ac.uk/tizard/research/research_projects/dh2007mansellreport.pdf
No one should be in any doubt that the conditions in closed institutions where people are set apart from the rest of us make for neglect and abuse. People’s voices are lost, families or supports are kept apart – and no one listens. Imagine even if you are articulate and know your rights how hard it might be – but when you are not…
Changing Attitudes Changing Lives
Day 82 was adopted by Manchester Institute of Education’s Learning Disability Studies bi-annual conference. They have been campaigning to save their unique course with people with learning disabilities embedded in its recruitment, teaching, assessment, research and ownership. People with learning disabilities are rarely included in academia as experts teaching and researching. Excluding them leads to the ‘them’ and ‘us’ culture amongst professionals who think they know best. In LB’s case this was seen in judgements that dismissed his epileptic seizures as attention-seeking behaviour and ignored the family’s knowledge.
The course leaders have managed to get the University’s commitment to embedding the learning disabilities steering group members’ input into a wide range of professional courses. Dr Craig Blyths, director of the programmes, said: “We fought long and hard to try to get them to see the error of their ways”. Despite the decision to discontinue the course in the Institute of Education, there were encouraging signs of continued commitment with their support for the conference and funding for the partnership steering group to go to Germany later in the year.
Day 82 was chosen to mark the outrage at what had happened. Although people unconnected with learning disabilities do care, many people don’t know about it.
Dr Sarah Ryan, LB’s mother, was the keynote speaker. She spoke of public issues – everyone’s concerns, and private troubles – personal to their family. She described the continued adherence to a medical model by authorities who define the ‘condition’ as the ‘problem’ rather than acknowledging the role of society – the social model. We saw LB in the midst of his family, lovable, funny, “a cool and quirky dude who was great to hang around with”. At 18 he suddenly became very anxious and unlike himself, unpredictable, hostile and aggressive. Other than Direct Payments there was no support. He attacked his mum, whom he had always idolised, and when he punched his school PA, was taken to a local assessment and treatment unit. Sarah described this as “the worst thing I’ve ever done”. They thought it was a specialist unit with a team of specialists who would assess and work out what was the matter. What they found was a badly run unit with staff who didn’t listen, who insisted he was an adult and who took no notice of the family’s description of his epilepsy. He’d always been sensitive to medication changes but the unit gave him an anxiety drug and didn’t notice he’d had a seizure. The family was unaware he was having two to three hour baths unsupervised as ‘part of his treatment’ which resulted in him drowning in the bath. They had to fight to get an independent report and to get it made public. The judgement was that this was a preventable death. As staff had been told by Sarah that he had had a seizure, they had the opportunity to prevent it.
Sarah felt that the health and adult services’ culture and structure underpin the problem and give little value to the lives of people with learning disabilities. Oxfordshire Local Authority, Sarah said, talk but don’t act. The Southern Health Group closed the unit but then banned baths in the next door unit even though no one there has epilepsy! People need to learn about the appalling provision and commissioners should know what is needed. It was clear to all of us that services do not listen to families nor do they understand the value of their knowledge and real partnership working.
Connecting Our Voices
Community Living went to Paradigm‘s seminar Connecting Our Voices which had adopted day 55. Supported by Nan Carle, the seminar aimed to connect people and highlight injustices like this and work together to develop some action. LB’s presence was symbolised by an empty chair and people from around the country shared their horror about his death.
The mother and brother of Chris from Wigan were there to tell their story – Chris had been sent away and was at risk of being sent even further away. This family’s experience showed how authorities used their power to act against people’s best interests and ignore families. The family described how they felt like ‘ghosts’.
People contributed ideas to counter complacency in accepting low standards, ignorance of what makes good support and the over-reliance on systems to protect individuals. People were appalled at the lack of commitment to bringing Chris home and offered their voices and some practical support to Chris’s family in their fight to get a local solution.
There are now more voices acting together. The Campaign for a Fair Society is calling for action to close assessment and treament units and is offering practical workable solutions. http://www.campaignforafairsociety.com/ The Campaign has joined People First England, representing people with learning disabilities, the Housing and Support Alliance, representing community organisations and professionals, and Bringing Us Together, representing families, to form the Learning Disability Alliance for England in a call to unite to bring about change. Everyone is urged to sign up to this campaign.
Sign up today and make sure we start to make the government accountable. Send your MPs CaFS’s call for action statement and ask for their support.
