It was supposed to have been a day of celebration.
Three years earlier, ‘HL’, a 48-year-old man with autism and learning difficulties, had come to live with a foster family. Despite having spent 32 years in institutions, he had adapted quickly to family life and had made remarkable progress.
‘He was off all medication and doing amazingly well,’ says Mrs E, one half of the married couple that cared for him. The health authority agreed the placement had been a success, and announced that it wanted to formally discharge HL from its care.
It was just the news that Mrs E and her husband had been hoping for. (Neither they, nor HL can be identified for legal reasons.) ‘He was part of the family by then, very popular with our three sons and the wider family,’ she says. While HL went off to the day centre, the pair went shopping for the party they were planning that evening to celebrate the arrangement being made permanent.
When they got back, they had a phone call with shocking news. HL had become distressed at the day centre after a mix up with the transport arrangements; when Mr and Mrs E couldn’t be contacted, he had been admitted to a hospital severe behavioural unit.
Not only was there to be no party for HL, Mr and Mrs E were not even to visit him. ‘We had to take him some clothes, but had to leave them at the entrance. They said we weren’t allowed to see him because it might upset him and he might want to leave with us,’ says Mrs E. It was to be several months before they would even set eyes on him again.
Mr and Mrs E had fostered HL after answering an ad in the paper seeking carers. ‘We just wanted to do something nice for somebody, now our boys were growing up.’ says Mrs E. They were to discover that in order to continue doing something nice for HL, they would first have to take on the entire UK legal system.
The 1997 ‘Bournewood gap’ case, as it came to be known, highlighted a loophole in the existing law, and the lack of protections for those like HL without mental capacity, who had been informally admitted to hospital and held in conditions amounting to detention. During a period of five months, the case wound its way through the high court, appeal court and House of Lords. At one point they even thought of contacting publicist Max Clifford, although are now glad they didn’t. They lost at every stage, and when they did eventually see HL again, he was barely recognisable. ‘I couldn’t believe it was him. He was covered in blood, where he had self-harmed, and had lost so much weight,’ says Mrs E. Eventually, and despite the courts ruling against them, HL was allowed to return to their care. Mrs E says: ‘When we gave him his coat to put on and said it’s time to go home, he was out in the car park before we could keep up with him.’
In 2004, the European Court of Human Rights was asked to rule on whether HL had been unlawfully detained by the hospital. The court agreed that he had, and that his human rights had been breached. It also called for UK law to be amended to fill the gap that HL’s case had identified, and for the creation of a legal mechanism for challenging the informal detention of someone without mental capacity. The ruling led directly to the introduction in 2009 of the deprivation of liberty safeguards (by way of an amendment to the Mental Capacity Act).
The DoL safeguards are far from perfect (of which more later), but they are an important recognition of the need to protect the rights of what one local authority director of social care calls ‘the most vulnerable of the most vulnerable’.
It was thanks to the safeguards that Mark Neary was able to get his son, Steven, out of the hospital where Hillingdon council said he should live, and back home with his dad. It was thanks to DoLS that a man who had been uprooted from the city where he’d lived all his life and stuck in a rural care home, was able to be moved back closer to his three daughters. His solicitor Nicola Mackintosh, who specialises in mental capacity cases, says: ‘He was really distressed. The DoLS best interests assessor came in and said, we have to get him a place in the city. The local authority said no. It’s in his best interests to be where he is.’ After two years during which the local authority ‘fought tooth and nail to keep him,’ Mackintosh finally succeeded in getting him back. ‘He is now much, much happier,’ she says.
Under DoLS, if a hospital or care home wants to deprive a patient of their liberty by restricting where they can go or what they can do, it has to apply to the local authority for approval. (A similar process applies where people are deprived of their liberty in their own homes, albeit with these decisions being overseen by the Court of Protection.) The patient has the right to have someone speak on their behalf, and to have their best interests taken into account. Restrictions must be the minimum needed to keep them safe from harm; must be regularly reviewed; and subject to appeal to the Court of Protection (which is what happened in the Neary case).
Most observers agree that the DoLS system is unnecessarily bureaucratic and lacks independence. The Law Commission has been asked to review its workings, after a critical report by a House of Lords select committee, in March this year. However, for all their failings, the safeguards introduced as a result of HL’s case will have made an immeasurable difference to the quality of life of many, many vulnerable people. Roger Hargreaves, a former mental health social worker, who leads on DoLS issues for the Mental Health Alliance, says the system needs overhauling, but adds: ‘There is a lot of good work being done. Care plans have been amended and people have been allowed home.’ Mr E says: ‘What happened to us just couldn’t happen now. Then, it was just a clinical decision by the doctor to keep him there.’
Nicola Mackintosh knows of patients who hadn’t been outside their care home in nine months, who are now taken out on a regular basis. Sophy Miles, the solicitor who acted for Steven Neary and chairs the Law Society mental health committee, points out that even a small change to a care plan can make the world of difference. She cites the example of a woman who was barred from entering the kitchen, to stop her getting hold of knives. After her case was assessed, her DoLS authorisation specified that the knife drawer should be kept locked. “So she was free to go into the kitchen if she wanted to get a biscuit or something,” says Miles.
Mr and Mrs E are by no means alone in winning significant legal changes by their willingness to put their heads above the parapet. There would have been no second Hillsborough inquest had it not been for the tenacity of Anne Williams, whose 15 year old son Kevin died in the 1989 disaster. In 2013, a remarkably brave young man, Hughes Chang, brought a judicial review which has led to better protections for all of the 75,000 17 year olds who are arrested each year.
The doyenne of courageous clients must, of course, be Doreen Lawrence, whose battle on behalf of her son, Stephen, led to sweeping legal and social reforms. I have written before on this blog of my admiration for Doreen, whose bravery and doggedness, has rightly been well recognised. By contrast, legal restrictions to protect HL’s anonymity mean Mr and Mrs E cannot even be identified, let alone feted (they sign off their emails with a cheery: ‘Yours anonymously, Mr & Mrs E!’). For them, there is no prospect of a seat in the House of Lords, or opportunity to carry the Olympic flag; no chance to be photographed alongside Emma Thompson and Annie Lennox in an advertising campaign for Marks & Spencer.
What also sets them apart is that Mr and Mrs E weren’t seeking justice for themselves or for a family member, but rather for a man they were being paid to foster, and who was no relation to them. Mrs E says: ‘If it was any other form of employment, you’d just walk away from it, but we couldn’t do that. We just wanted to get him back where he belonged and where he wanted to be.’
Seventeen years on, they continue to campaign on the issue, and provide support to others who find themselves battling local authority intransigence. Just recently, they heard from the wife of a dementia patient in his 80s, who was excluded from the DoLS decision-making process on safeguarding grounds. ‘He wanted to go home, but the local authority said the fact she called him “naughty boy” meant she was a danger to him.’ They were also contacted by a son was told he couldn’t bring his father home, because there was a cooker in his kitchen.
This year saw a number of significant milestones for HL. It is 20 years since he came to live with Mr and Mrs E, 10 years since the European court ruling, and his 65th birthday. Unsurprisingly, they threw a big party for him, which he did actually get to attend this time. The event was a great success and well attended. Mrs E says: ‘I thought to myself, if anyone tried to take him away again, there’s 40 people in this room who would vouch for him.’