Awards are not enough…

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NCIAThe Joy of Sound (JOS) is an award-winning arts and music voluntary organisation in southLondon. It is rooted in and committed to grassroots volunteerism. But when it started complaining about local council care provision , awards didn’t get it very far……

William Longden founded The Joy of Sound in 2000 as a result of visiting a day centre in Lambeth and meeting a profoundly disabled man. William says: “I was shocked by the provision that was surrounding him, and the people ignoring his plight.” After this experience, William started to design musical instruments for (disabled people) in Lambeth, for which he was awarded a Masters in ‘Design for Disability’. This was followed by a (Arts and Humanities Research Council) award for William to do a PhD involving another two instrument projects, one based in Lambeth. William says that feedback on The Joy of Sound “has been quite amazing”.The project has involved more than 800 volunteers.

However, part of the work William has done is to raise complaints with the local council about care provision. This has made things more difficult for The Joy of Sound. After William started making complaints to Lambeth council, he says “the story changed radically”.

Two of Joy of Sound’s volunteers successfully reported an incident of bullying by a staff member. William says: “It was about inter-ethnic bullying at a session. A guy gave a cut-throat signal to a participant. He was eventually sacked, I believe.”

 William began to regularly raise issues about care provision and management tructures in Lambeth, complaining about a lack of staff training and bad staff attitudes and a lack of proper care. A Lambeth employed  liaison officer was appointed for the Joy of Sound.

William’s concern is for the people who need support. “We’re dealing with people who, in the worse-case scenario are acutely disabled and who consequently have heightened periods of decline, particularly when their circulatory function is impeded by being disabled. They need personalized attention and stimulation in order for them to live and to breathe, but they are not getting it.”  William brought this to the attention of his liaison officer very early on but the liaison officer “kept telling me he was handing it on to management and yet I was not getting any feedback. I asked him to write things down. He’d never respond to my mails, he’d never give me a due response.” William has a backlog of about 600 emails dating back to 2008 for many of which there have been no proper acknowledgement or response.

Meanwhile, staff from Kensington and Chelsea attended a Joy of Sound training session that William was running in Lambeth for volunteers, staff and managers. The training was in Joy of Sound approaches to ‘intensive interaction’ (a practical approach to interacting with people with severe learning disabilities).The training received really good feedback. William says:“Kensington and Chelsea support staff were exemplary in their practise – they recommended that we take the project over to Kensington and Chelsea, which we eventually did last year”. The Joy of Sound’s work has also been rolled out recently in Bexley Heath and Notting Hill.

However William continued to raise issues about care with Lambeth council. Things came to a head in 2011 when William reported that he had been given personal profiles of two of the people he’d been working with since 2000 which contained inaccurate information. William says: “That’s when the doors collapsed on me and when they started really intimidating me in various ways.” Lambeth withdrew all of its payments for Joy of Sound workshops soon after William’s complaints about the personal profiles had been registered.

William says that some Lambeth care workers “were exemplary in really supporting me until they were pressurised by management and withdrawn.” He says that documents have gone missing and his emails have not been responded to. A Health and Safety check was ordered on The Joy of Sound showing that “an entire management structure is involved from the local authority.”

William says: “Families of disabled people are exhausted and they’re so afraid to speak out because they feel they might lose the little resource they get if they say anything about local services, and this is well known in Lambeth.”

“I feel very, very sad because really the people that are suffering are also the carers. At the end of the line are the disabled people and the disabled people suffer, and suffer, and suffer, because the people above them suffer and the people above them suffer, and the very few people at the top of the management chain that don’t suffer, people that are often totally unaware of what is going on until people like me start to bring the issues to light and then get victimised for their whistle blowing.”

So what would make a difference? “For Lambeth to acknowledge that these issues are real,” William says. He gave Lambeth council one last invitation to do something about the problems: “I said if you want to resolve this issue mutually, call me and do something creative. They got back to me saying, as they told me before, they’ve got nothing more to say. So I then sent my letter back to the Ombudsman and now wait to see what happens next.”

William is determined to keep going. “The world is a wonderful and condensed place for contemplation,” he says.

Will was speaking to Nazreen Subhan, and in a personal capacity. You can find out more about Joy of Sound here:  

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