Friday, 10 August 2012

Dear MP.....

Please read Mencap and the Challenging Behaviour Foundation’s ‘Out of sight’ campaign report which tells the stories of James, Joe, Emmanuel, Victoria & my daughter, Chrissy In the report, you hear from their families, about the terrible neglect and abuse their loved ones have experienced. Please email your MP today and ask them to take action to make sure this never happens again

One of the worst cases in the report is that of 38-year-old James, who has spent five years at an assessment and treatment unit located 150 miles from his home. In this time, James has experienced sexual and physical abuse by other patients, numerous unexplained injuries, neglect by staff and has had multiple medical complaints left untreated. James’ parents have been desperately fighting to have their son moved to a service nearer to home.

Since the BBC’s ‘Panorama’ exposed abuse at the Winterbourne View assessment and treatment centre, last year, Mencap and the Challenging Behaviour Foundation have received 260 reports from families about abuse and neglect of people with a learning disability in similar services.

There are currently hundreds of people with a learning disability in assessment and treatment units like Winterbourne View, and other similar services. Many of these are located hundreds of miles from people’s homes, where they are at particular risk of neglect and abuse. We're lucky, we fought tooth and nail to get Chrissy placed in an assessment and treatment unit only a 30 minute drive from our home, and she visits us every weekend - but until recently service fell far short of expectations. Worse still, commissioners failed to follow up on her progress, ignored communications and did not attend care planning meetings. I've had to take numerous steps force them to take responsibility for meeting Chrissy's complex healthcare needs. A significant contributing factor is a four-year Ordinary Residence funding dispute between the NHS and local authority.

While these units were developed to provide short-stay, specialist treatment for people with a learning disability who have experienced a crisis, in reality, over half (53%) of patients remain for two years or more and nearly a third (31%) stay for more than five years. Assessment and treatment units have been described as “dumping grounds” by learning disability experts. Chrissy has been at her unit for over two-and-a-half years and is nearing the end of her treatment but, despite her complex needs and the Challenging Behaviour Foundation's assertion that it can take 12-18 months to find places in the community for someone like Chrissy, commissioners refuse to start planning her discharge and have repeatedly broken promises. I have had to take on care management responsibility and drive every aspect of Chrissy's care while the NHS commissioners who pay for her treatment turned their backs on her.

Since a change in leadership the hospital are finally doing everything I wanted them to do for Chrissy in the first place, so I DO see the need for assessment and treatment units in crisis situations like the one Chrissy was in but they need to be as Mencap and the Challenging Behaviour Foundation describe, and subject to closer scrutiny by outside services, especially responsible commissioners. The pathways to transition patients into these units need to be far better managed too. After two traumatic residential placement breakdowns, we had to force the NHS trust's hand to get Chrissy into a local unit - they wanted to send her 65 miles away to a unit near Gatwick that had a bed-blocking problem and could give no definite admission dates. They are currently funding Chrissy's place at the assessment and treatment unit on a 'without prejudice' basis.

The government must urgently address these systemic failings in the care of people with a learning disability. Please contact the Secretary of State for Health and urge him to ensure that the government’s final report on Winterbourne View commits to a strong action plan to close large, institutional-style services and develop appropriate local assessment & treatment services for people with a learning disability. What has happened to the people at Winterbourne View, and those in the ‘Out of sight’ report, must not happen to anyone else.

Please also attend an important debate secured by Tom Clarke MP on this issue. It is an end of day adjournment debate on the abuse of people with a learning disability, on Monday 3 September.

Yours sincerely.....

I am a SWAN UK (Syndromes without a Name) blogger

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