People with learning difficulties are still suffering institutional abuse, as last week's Cornwall report showed. Here, Janet Snell hears a first-hand account of such abuse from HL and his carers, the people at the centre of the landmark Bournewood case
It's hard to feel anything other than shock and anger when you watch the video of HL on the day he was finally discharged from the "care" of Bournewood Hospital in Surrey.
He resembles an inmate of a concentration camp, painfully thin (a man in his forties wearing jeans marked age 12) with a glazed expression and coated teeth.
His body is dotted with wounds, some self-inflicted, some from attacks by other patients. His blackened toenails are said to be the result of staff standing on his feet as a method of restraining him.
It is not clear exactly what did happen during his five months on the intensive behavioural unit at Bournewood in 1997 because HL, now 56, has severe autism and does not communicate verbally.
But his facial expression speaks volumes as the home video tracks his transformation on his return to the timbered country cottage he initially moved into in 1994, following 32 years in a long-stay hospital.
After less than a day he manages his first smile as George, the oldest of four Old English sheepdogs that share his home, renews their acquaintance. Then at dinner time HL is pictured tucking in delightedly to some home cooking.
By the end of the film he is like a different person, so clearly happy that the clinical psychologist who stated "people like HL should be in group homes, not with a family" would have been embarrassed.
His carers, Judy and Ian,* are incensed that Bournewood Hospital made it so difficult for them to take him home after he was detained following an outburst at his day centre.
Part of the family
HL became part of the family after the couple, who have three grown-up sons and two grandchildren, answered an advertisement in the paper asking for families willing to take in people with learning difficulties leaving the local long-stay hospital.
"We felt we had room in our lives so we volunteered," says Ian.
The couple have never regretted their decision and the family photo album is testament to the fact that the placement has enriched the lives of all concerned.
There are pictures of HL enjoying himself on a family holiday in the Isle of Wight, laughing at a neighbour's party, and sitting on the settee with one of his carers' grandsons, the child trying to copy the way HL crosses his legs.
"Our grandsons idolise him - in fact everyone who meets him likes him," says Judy. "He has become a real community presence and I think he is more accepted as a member of a family than, say, if he was with a group home on an outing."
The couple thought everything was working out well when, on 22 July 1997, HL set out as usual to go to his day centre by minibus.
They went into town to buy food for a party to mark the fact that, after more than three years of wrangling, HL was going to be officially discharged by the hospital into their care. But then they received a phone call saying he was back in hospital. He had become upset by another minibus passenger and the day centre called an ambulance.
"When we were told we weren't allowed to see him we were frantic," says Judy.
"He arrived at A&E and within 20 minutes it was a case of men in white coats taking him to the adjoining intensive behavioural unit.
"The clinical decision was that we couldn't see him, but it must have been so frightening for him being taken away like that. As the days went by they kept fobbing us off and we began to think he would never come out of hospital again."
The hospital authorities maintained throughout that HL was compliant and happy to be in the unit but the couple did not believe it and mounted a legal challenge.
After a series of court battles, in October 1997 the Appeal Court ruled that HL was being detained illegally. The clinicians' response was to section him under the Mental Health Act 1983 but managers conceded he did not meet the criteria and ordered his release, which took place that December.
Throughout this time, the main concern of Judy and Ian was the infringement of HL's liberty, and they had no idea he was being ill-treated until they were finally allowed to see him after almost four months.
"The consultant psychiatrist wanted to meet us first to prepare us for the visit, but nothing could have prepared us for what we saw," says Judy.
"When they took us in at first I didn't even realise it was him until he lifted his head and I saw the recognition in his eyes. He was clearly drugged and his cries were like a wounded animal."
The couple have been trying to raise the issue of the way HL was treated in hospital but have been told staff have "moved on". And the fact that they didn't make an immediate complaint has counted against them. Ian adds: "When we saw the horrific state he was in our immediate concern was to get him off the hospital premises as quickly as possible.
"So when they drew up 41 pages of guidelines on how he had to be dealt with if he came home, much to their surprise we agreed to it. We would have agreed to anything to get him out of there."
Ian and Judy had to demonstrate that they could care for HL in the manner set out in each of the guidelines - and new clauses were constantly being added.
"We like to give him as much choice as possible. At the hospital their whole mindset was negative - it was all about what he couldn't do," says Judy.
Judy and Ian are seeking an independent investigation and an apology for HL and assurances that nothing like it ever happens to another vulnerable adult. But as care inspectors suggested last week in their report into abuse in Cornwall, institutional mistreatment of vulnerable people pervades our society.
What happened to HL behind closed doors will hopefully make policy-makers pause for thought before they push ahead with their proposal to allow detention of people who lack mental capacity for a year or more (Call for more clarity on advocates' role).
One look at the video of HL should be enough to convince them that doctors do not always know best and that shifting power away from the vulnerable and those who speak up for them is a move in the wrong direction.
* Not their real names
Life and times of HL
1949 born in Surrey. 1962 moved to long-stay hospital. 1994 joined family under resettlement programme. July 1997 Taken to hospital after outburst at day centre. December 1997 released from hospital after the Appeal Court rules he was detained illegally.
See Heng: Abuse of adults in institutions must stop