Learning disabilities & autism care ‘shameful’

Norman Lamb MP is demanding urgent action to reduce the number of people with learning disabilities and autism stuck in big institutions, following serious concerns highlighted in last night’s Channel 4 Dispatches documentary about the care given to people with these conditions.

‘Under Lock and Key’, which aired on Channel 4 last night (Weds 1st March at 10pm), revealed that thousands of people with severe learning disabilities and autism are still stuck in hospitals, despite promises to reduce the number of people in these settings. Experts have long called for people with these conditions to receive support from local, personalised care providers in the community, rather than big impersonal institutions which reduce independence and harm recovery.

The programme also discovered serious concerns about the care in one of Britain’s largest mental health centres, St Andrew’s in Northampton, including heavy use of face-down restraint, seclusion, and anti-psychotic medication in both adults and children.

Fauzia Yasmin Hussain, who has autism and Tourette’s, was admitted to St Andrew’s at the age of 15.  She was kept mostly in seclusion, in a room with very little natural daylight, and was given high doses of anti-psychotic drugs including intramuscular injection.  After her family raised concerns about her care with Norman Lamb, who was then Care Minister, he visited St Andrew’s and was appalled at how she was being treated. 

He said in the documentary: “I went to St Andrew’s and saw Fauzia in her room, which in effect was a cell.  A 15-year-old girl was being treated in effect like a prisoner. It was one of the most shocking things that I’ve seen in my time in parliament.  Just as a human being I was horrified.”

Mr Lamb initiated a review of her care, which ultimately led to her being discharged in September 2014 after almost two years in the institution.  She now receives high-quality care at Alderwood Care Home in Colchester, coming home to visit her family once a month. Her condition and quality of life has improved dramatically. 

Norman Lamb has now written to the Chief Executive of NHS England, Simon Stevens, to request a meeting to discuss care for people with learning disabilities and autism, along with Fauzia’s aunt, Dr Shahana Hussain, and Dulwich MP Helen Hayes, who also appeared in the programme.

Commenting, Norman Lamb said:

“It is shameful that there are still so many children, young people and adults with learning disabilities and autism who are stuck in institutions and treated as second class citizens.

“Submitting young people to face-down restraint, seclusion and sedation is unacceptable and has no place in our NHS.  In my view, it is a significant abuse of human rights. I struggle to think of anything less therapeutic or more detrimental to good care and recovery. 

“I was absolutely horrified by what I witnessed when I visited St Andrews.  Fauzia was a young, vulnerable girl who was in care funded by the state and was being badly let down. She was being robbed of her dignity and independence.  Fortunately I was in a position to initiate a review which led to her discharge but there are too many people who are treated in this way. 

“We set a new ambition to reduce the number of people stuck in institutional settings by providing better support in the community. We also published a Green Paper before the election proposing new legal rights for people to challenge decisions about their care and to have more control over the resources available for their care. But progress has been far too slow and the Government has not legislated to give people these rights. I have asked for a meeting with Simon Stevens to discuss how we can end this scandalous situation.”

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