Rights for vulnerable people in the care system

(The individuals in this case cannot be identified for legal reasons)

Mr and Mrs E live in a picturesque cottage in a quiet Surrey Village. Inside, the house is buzzing with activity: three Old English sheepdogs, rescued from a home for abandoned animals, roam about the kitchen and patio. Photos of family outings cover the walls. Footsteps on the stairs signal the entrance of HL, the autistic man for whom Mr and Mrs E are carers. He pauses for a silent greeting before making his way swiftly to the fridge. “He knows exactly where we keep his favourite juice,” laughs Mrs E.

Mr and Mrs E, are remarkable people, whose struggle for HL’s human rights has changed the way vulnerable people are treated under British law.

HL came to live with Mr and Mrs E in 1994, under a resettlement scheme from Bournewood hospital where he had lived for 32 years. With their children grown up, the couple had decided to open their home to someone who needed it. Looking after HL was no easy task: he cannot talk, and needs help with basic tasks like washing and dressing himself. Mrs E says: "It's fair to say that it was a challenge - but it was rewarding to see how much HL benefited from living in a family setting. At first he was very institutionalised, but he gradually became more confident and progressed beyond all expectations."

 A requirement of his placement was that HL would attend a day centre once a week, to which he travelled by the centre’s transport. On July 22nd 1997, three years after he had come to live with Mr and Mrs E, it was not the usual driver who collected from their home. Rather than taking him straight to the day centre as normal, the driver took a different route, collecting others on the way. HL became increasingly agitated.

The next thing Mr and Mrs E knew was that HL had been taken back into Bournewood hospital and detained there. He had been admitted informally, using a clause in the Mental Health Act 1983 under which the hospital simply had to argue that it was in his "best interests" - and as HL cannot speak, he was unable to object. Mr and Mrs E were not allowed to visit him, apparently in case he wanted to leave with them. "They sent us a letter thanking us for agreeing not to visit," says Mrs E. "We hadn't agreed anything - they had decided, without any consultation."

When Mr and Mrs E realised that HL was not going to be allowed home, they engaged a solicitor on his behalf and took a case for unlawful detention to the High Court, which ruled against him. The Appeal Court overturned the decision in October 1997, and the hospital chose to section HL, although he did not meet the criteria, and in December that year he was finally discharged by the hospital managers. "When he got home he was in a terrible state," says Mrs E. The couple have a video showing the abuses to which HL had been subjected in the hospital: he looks half-starved, with blackened toenails and scabs on his face. "When he came home he just ate and slept for three weeks." 

Meanwhile, the hospital trust, supported by the Department of Health, appealed to the House of Lords over the ruling. The Mental Health Act Commission suggested that 22,000 people being detained informally would have to be detained formally under the Mental Health Act if the ruling were upheld. In 1998, the House of Lords overturned the ruling that HL's detention had been illegal. Mr and Mrs E decided to take the case to the European Court of Human Rights, which in October 2004 ruled in HL’s favour. As a result the government introduced the new Deprivation of Liberty Safeguards, which came into force in April 2009.

The Deprivation of Liberty Safeguards provide extra protection for the human rights of people who lack capacity and find themselves deprived of their liberty. As well as people with learning difficulties and mental health conditions, this could apply to older people in care homes. The Safeguards provide a rigorous process by which health services have to prove that compulsory detention is the best solution for the individual concerned.

"These new guidelines are important because they provide a mechanism by which people can challenge the compulsory detention of people who are unable to speak for themselves," says Mr E. "The problem is that many families still don't know they exist, and as a result despite the large numbers of people detained informally very few authorisations have been applied for. The authorities are considering the human rights of vulnerable people more than they used to, but there is still a long way to go."

Last updated: 13 Jun 2016