Tony Hickmott goes home

A loving family fighting his corner, scrutiny of the media and supervision by the Court of Protection have created the possibility of equal justice, equal opportunity and equal dignity for Tony Hickmott. 

21 years, 4 months and 3 days

If you're old enough, you'll remember where you were on 11 September 2001. I'm not sure whether he had access to a TV, but on 9/11, 22-year-old Tony Hickmott had already been detained for five weeks under the Mental Health Act 1983 in Cedar House Hospital, a mental health unit near Canterbury. He remained detained until last week.

Save for the pandemic, during his entire 21 period of detention, his parents Pam and Roy visited Tony every Thursday, making the four-hour roundtrip from their home in Brighton. In 2009 Tony was put in long-term segregation consisting of a bedroom, a living room and a toilet. He remained there for the rest of his stay.

In 2013, the hospital's clinicians decided there was no clinical need for Tony to remain in a psychiatric hospital. They were happy to discharge Tony, but he needed somewhere to go. Tony has profound autism and learning disabilities, and his parents Pam and Roy couldn't meet his needs at their home.

When someone has been detained under s.3 of the Mental Health Act 1983, the legal duty on providing aftercare (including a place to live) falls jointly on the person's local authority and the Integrated Care Board (the local part of the NHS that was until recently called 'Clinical Commissioning Groups').

For several years, nothing happened. Then in 2018, the public bodies identified a community care provider but they proposed a package that was too restrictive for Tony. In January 2019, Pam and Roy were told that it wasn't in Tony's best interests to have a 'Care and Treatment Review'. This is an important and formal meeting with external scrutiny to look at why a person with a learning disability or autism is still in hospital.

Media 

Pam and Roy were so despondent with the fact that Tony had been locked up for 18 years and had nowhere to go, that they turned to the media. Journalist Ian Birrell wrote an article in the Mail on Sunday on 19 May 2019: "Vulnerable man locked in solitary confinement for 10 YEARS: Horrifying case revealed in new report as Health Secretary is finally stung into action".

Within two weeks, Cedar House hospital told Pam and Roy that they didn't like the media coverage and had given 20 days' notice to NHS England, which is the body paying for Tony's care. This meant a risk that Tony might be moved to another hospital, potentially even further away. The hospital agreed not to enforce its notice, which bought Pam and Roy some time, and they asked me for legal advice.

I had done a few cases for solicitor Ravinder Brar who had just set up her own firm, and asked Ravinder whether she'd work with me on the case on a pro bono basis. She kindly agreed. I asked my Doughty Street colleague Aswini Weereratne KC for guidance, as there were so many unusual elements to this case. 

We made an application to the Court of Protection in June 2019. The local authority did not find Tony somewhere to live, but in 2020, Cedar House hospital proposed its own nearby care plan Cedar House Bungalows for an interim move. Independent psychiatric expert Dr Chris Ince advised against this, and Tony's parents and the Official Solicitor on Tony's behalf resisted it, and the plan fell through.

No progress was being made, so in November 2021, we asked HHJ Hilder, the Senior Judge of the Court of Protection, to list monthly court hearings to supervise the discharge planning process. She agreed, also directing the local authority to hold biweekly discharge planning meetings chaired by a senior manager. These were to take place until was discharged.

It’s their story too 

In October 2021, the BBC and Sky News made an application to use Tony's name in reporting the case. They were represented by my colleague Claire Overman. Pam and Roy supported their application, which was successful. In HHJ Hilder's judgment, she said "Mr Hickmott’s parents want to raise awareness of their son’s situation, and their need to resort to these proceedings forms an important part of the narrative of their struggles on his behalf," and that they "seek the proposed reporting. It’s their story too. Unless the application is granted, they won’t be able to set out the extent of their struggles to restore their family life."

Since then, Jayne Knight and Gail Ranford have provided pro bono advocacy services to Pam and Roy. There have been bi-weekly discharge planning meetings and monthly court hearings online. The housing provider Lets for Life and care provider Seco Support were chosen. NHE England made available a capital grant for Lets for Life to identify, buy and renovate a house in Brighton for Tony. Seco has recruited and trained carers to provide support for Tony in his house. 

Home 

Having visited over 1,000 times since 2001, last Monday (31 October) Tony's dad Roy went to Cedar House hospital for the final time. It was D-day, D for discharge. Roy, Tony and two Seco staff who have been working with Tony over the last few weeks got into a car drove the two hours to Brighton. During the ride, Roy explained to Tony that he was going to his forever home and would not be going back to Cedar House. 

They arrived at Tony's new house in Brighton. Having campaigned for two decades to get him home, Pam was waiting for her beloved son. She had cooked a stew for dinner. Tony has been doing well in the week since then. Although there's some snagging to complete in the house and some tweaks to make in the care provision, all is well. 

We made the application to the Court of Protection 27 months ago. The court bundle now runs to some 2,393 pages. There have been (I think) 14 hearings (thank you to my colleague Gemma Hobcraft for covering the hearings that I couldn't attend). I've done 110 pro bono hours on this case, and Ravinder a similar amount. 

Although the Court of Protection can't click its fingers and create community provision, there's little doubt that without the scrutiny of the court, Tony would still be facing years more unnecessary detention. In a statement last week to court, Pam and Roy said this:

"All we have ever wanted for Tony is for him to live an ordinary life, at home. We don’t need anything special, just to be looked after and be given opportunities on an equal basis with. These words of Eleanor Roosevelt, who participated in the drafting of the Universal Declaration of Human Rights, apply to Tony too:

'Where, after all, do universal human rights begin? In small places, close to home—so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere.'

It is only thanks to Lets for Life and Seco that Tony has a fighting chance of finally living the life he deserves in the community. We are relieved that at long last, Tony will be in a good house, close to us, and be looked after by good people."

When I spoke to Pam yesterday, she told me she's cooking a Sunday roast dinner and taking it round to Tony's house. It was the family's first roast dinner for 21 years. Roy is looking forward to taking Tony to the pub for half a pint and a cheese roll. 

Window of opportunity for reform 

I hope that Tony's story inspires wider change. There are over 2,000 people people with learning disabilities and/or autism who are stuck in mental health units, all inappropriately placed, and many suffering years of pointless detention. At the beginning of the year I wrote a blog on the system and what could be done to get people out and into the community. 

Through a freedom of information request, we know that NHS England has paid CareTech (the owner of Cedar House hospital) around £650,000 per year to look after Tony. There are better ways of spending that sort of money. Parliament has an opportunity to change s.117 of the Mental Health Act to introduce financial incentives/penalties so that local authorities and ICBs speedily put in place aftercare so that no-one spends unnecessary time locked up in an institutional settings. 

Removing learning disability and autism from the Mental Health Act will make little difference, as people will either be detained under the Mental Capacity Act, or end up on the streets or in prison. It is wishful thinking that reforming the Mental Health Act will create community services. 

NHS England should refer the entire 'transforming care' cohort of cases to a panel of specialist lawyers, as many inpatients are still without lawyers who know about the three necessary areas of law: mental health, mental capacity and community care. And the Legal Aid Agency must provide non-means tested legal aid for cases in the Court of Protection to ensure that people whose rights can make applications. Tony's case is an example of the pivotal role the Court of Protection can play in securing the right to live the community, and I hope that we see a burgeoning jurisprudence in this area. 

I can't wait to finally meet Tony in a few weeks, and to celebrate his return to the community with him, Pam and Roy. Bring on those half-pints.