Tony Hickmott: Not the happy ending everyone had hoped for

By Amanda Hill and Lucy Series, 24^th October 2024

Hopes were high back in 2022. Tony Hickmott^[1] who had spent 21 years in a secure Assessment and Treatment Unit (ATU), was finally moving back to his home town of Brighton, close to his parents, Pam and Roy. This was seen as a new beginning for Tony, who has autism and learning disabilities. Unfortunately, things have not worked out as hoped. 

This is a blog in two parts.  In the first part, Amanda Hill, a PhD student at Cardiff University researching the Court of Protection, reports on the most recent hearing in this long-running case. She also considers the ongoing role of the Court of Protection in a person’s life, the role of Tony’s parents and the media, and reflects on what being “at home” means. In the second part, Lucy Series, Associate Professor at the University of Bristol, researching mental capacity, social care and deprivation of liberty safeguards, reflects on Amanda’s report of the hearing and provides her own commentary on the case.

First, some background. In 2013, after a number of years of being held in a psychiatric hospital, Tony stopped meeting the criteria to be there. But he could not be discharged from hospital because a suitable placement could not be found for him. The Court of Protection became involved after an application by Pam and Roy (represented by Dr Oliver Lewis of Doughty Street Chambers) in June 2019. After a number of Court of Protection hearings, the judge ruled that Tony should be discharged from hospital. He returned to his home town of Brighton on 31st October 2022, to live in a specially renovated house with care from a bought-in provider.  The parents’ lawyer, Oliver Lewis, celebrated the court decision as creating “the possibility of equal justice, equal opportunity and equal dignity for Tony Hickmott:  Tony Hickmott goes home.

Jayne McCubbin of BBC News, also wrote about Tony’s discharge from hospital in this article: Tony Hickmott: Autistic man to be released after 21 years in hospital. She described his parents’ high hopes for Tony’s new living arrangements at that time: “They are looking forward to seeing their son living freely again – with support – in a bungalow close to where they live. “I can’t wait for him to make us a cup of tea,” Pam added. “He wants to go to the pub with me,” said Roy. “I’ll have a pint and he’ll have a half and he says he’ll have a cheese roll. That’s what he wants, a cheese roll. I can’t wait. It’ll be heaven.“

The Hearing of 20th September 2024, by Amanda Hill

I joined this hearing (COP 13471388 before Senior Judge Hilder) at First Avenue House by MS Teams. Oliver Lewis was again counsel for Tony’s parents Pam and Roy. Unfortunately, due to the hybrid nature of the hearing, the sound was not very good overall and I missed the names of the other legal representatives.

Counsel for Tony’s parents set out the current situation. In short, it seems that despite hopes of an active life for Tony, including activities such as going to the pub, his life is severely restricted: Tony has been discharged from hospital “and thank goodness for that” but not a lot else has been achieved. The care plan is quite old and Tony has been “barricaded” into the bedroom, the kitchen is bare and awaiting renovation, the home has been stripped back and, all in all, is similar to a seclusion room. Pam and Roy have not been able to take Tony out for several months and they do not understand why they have been prohibited from doing so. The reality is very different from the hopes of Tony’s parents when he was discharged from hospital. Counsel for Tony’s parents described Tony’s living arrangements as being like“an institution in the community”.

Counsel for Tony’s parents described Tony’s care too.  He said that Tony is being looked after by an unregulated care provider. This has implications for Tony in that staff can’t provide personal care to him, including brushing his teeth. They can prompt Tony, but they can’t do it for him. This is leading to dental problems. Clipping his nails is also not happening. Counsel for Tony’s parents said these were the consequences of non-registration and that as a result “his personal care needs are chronically not being met”. 

There was quite some debate about the role of the Court of Protection and who should continue to be parties. Tony’s parents want the Court of Protection still to be involved – to provide independent oversight into what is happening “on the ground”.  NHS Sussex ICB argued that “proceedings should come to an end, as they have ceased to be useful” and they wanted to be discharged as a party. Senior Judge Hilder decided that the COP did still have a role. Although counsel for Tony’s parents suggested another hearing in 6 months, the judge ordered a hearing in a year’s time. This will be the annual review to look at whether the Deprivation of Liberty should continue to be authorised.

The new applicant will be the local authority, Brighton and Hove City Council,  with NHS Sussex ICB  as 1st respondents, Tony’s parents as 2nd and 3rd respondents and the Official Solicitor (representing Tony) as the 4th respondent. Sussex Partnership NHS Foundation Trust and NHS England were discharged as parties. A future hearing date was set for 2pm for 2 hours on 19^th September 2025. 

Counsel for the local authority mentioned that the CQC (Care Quality Commission) had confirmed that Tony’s case “is next in the queue”. The judge replied that being next in the queue “does not mean next to be dealt with because something more urgent could come up”. These comments were in response to the unregulated care Tony is receiving. Round Table Meetings must be held to assess ongoing progress. The judge stated that although the court remains there if needed to be called on, “I hope this window allows a breathing space and that matters can be dealt with….it is not the end of the work”. She also authorized Tony’s Deprivation of Liberty but said that if things become more restrictive there would have to be a return to the court earlier than the listed date. 

The role of the Court of Protection

I found the discussion around the role of the Court of Protection interesting. Initially the court had been involved to order Tony’s discharge from hospital. Now the parents want the court to stay involved to ensure that Tony is receiving appropriate care. Although counsel for the parents stated that the court’s role isn’t to “micromanage”, it seemed to me that without the Court’s continuing involvement, Tony’s parents fear that there is no mechanism for ensuring improvements are made to Tony’s care and that he receives good ongoing care. 

The judge seemed to accept in the hearing that the court will continue to be involved on an ongoing basis. She said “…you are right that the main purpose was achieved. Tony is now living in the community. The court will probably be involved in the rest of Tony’s life for the Deprivation of Liberty authorization. So, the dispute between the parties is about the nature of that involvement”. She also referred to the funding responsibilities of the ICB and the local authority, so I think that there was an element of disagreement over who would fund on an ongoing basis. 

The discussions about the ongoing role of the Court of Protection had implications for the parties involved, as I have referred to above. The judge, in considering future arrangements, said “I’m concerned about level of representation of Tony” and mentioned that there could be a “new advocate who has not seen anyone” and a risk that “the court loses continuity”. It seemed to me that the judge wanted to ensure that Tony continued to be represented, that there was some sort of continuity but also that the previous hearings were terminated. This resulted in the change of parties and who was the applicant etc. The COP case number will, however, remain the same.  

The judge’s acknowledgment of an ongoing role of the court in Tony’s life should not be interpreted as meaning that the court will become Tony’s guardian. That is not the role for the court, as clearly stated in the appeal in Re A (widely known as the “covert medication: closed proceedings” case)  [2024] EWCA Civ 572:

“……the Court of Protection exists to make decisions about whether a particular decision or action is in the best interests of the individual. It is not a supervisory court, as confirmed by Baroness Hale, giving the judgment of the Supreme Court in N v ACCG [2017] UKSC 22, [2017] AC 549………the Court of Protection does not become the guardian of an adult who lacks capacity………The Court of Protection has become a fixture in A and B’s lives. If that is necessary because the court is for good reason unable to bring its involvement to an end, so be it, but it should not be mistaken for normality.” (§90)

One important distinction from the “covert medication:closed proceedings” case is that here, it is Tony’s parents who want the Court of Protection involvement to continue, not the public bodies. 

The role of Tony’s parents, Pam and Roy

Tony’s parents made this application before the court because they have concerns about Tony’s care and living conditions. I have seen cases where that can lead to friction between those providing care and family members. This has resulted in a breakdown in relationships between carers and the family, leading to a placement being terminated, for example in this case that I wrote about: Crisis point – is hospital a viable option for P? In that hearing, which exposed tensions between P’s mum and previous carers, leading to a new placement needing to be found for P, the judge said: “I stress to the court that the (new) placement needs to work. If it is put to me that the relationship is deteriorating, I will put measures in place to ensure that the placement is retained”. 

There is no suggestion here that Tony’s residential arrangements are threatened. But counsel for the parents submitted that Pam and Roy were being blamed for the difficulty in recruiting a manager for Tony’s house. He stated “for the record” that the parents were not involved in the first round of recruitment and that they didn’t know how they could be seen to be influencing recruitment. He suggested that blaming the parents was creating a culture of lack of transparency and trust. To me, this highlights how difficult it can be for positive relationships between families and care providers to be maintained, where families have concerns about the care of their family members. 

Pam and Roy expected that they would be able to spend more time with Tony after his discharge from hospital and so I found this comment from Oliver Lewis in the hearing particularly striking and sad: “They say they just want to be Tony’s parents and have been robbed of that for many years…they now only see him through the window once a week…and want to hand over to carers that they have confidence in.” As Pam and Roy are both now in their early 80s, I’m sure this situation weighs heavily on their minds. 

An institution in the community?

This term that Counsel for the parents used really struck me and it reminded me of some work done by Dr Lucy Series, Associate Professor in Social Care Law and Policy at the University of Bristol. She wrote Deprivation of Liberty in the Shadows of the Institution. In that book she writes about the shift in the 20th Century from large institutions into community living, including to “family homes” and reflects on the meaning of “home” and “institution”. In Tony’s house, I don’t know why the kitchen seems to be unuseable, which doesn’t seem typical of a home. The fact that Tony’s parents can’t take him out as they had wished also mean heavier restrictions than expected by his parents when he was discharged from hospital. The description of Tony’s living arrangements that I heard about in the hearing did not seem much like a “family home” to me.

Media coverage

This case has been extensively covered in the media and I wondered whether there would be journalists observing this hearing, for example Jayne McCubbin from BBC News. However, when I joined the MS Teams link before the hearing, Kim Dodd and another person I know from the Open Justice Court of Protection Project’s WhatsApp Observers’ Group were the only other people on the link. I couldn’t see all of the people in the courtroom though because of the camera angle. However, part way through the hearing Jayne McCubbin did join the hearing via the MS Teams link. I found out later that Jayne had applied for the link like the rest of us, but unlike us, she had not been admitted to the hearing at the start. This meant that she could not write an update, having missed a great deal of the hearing. Tony’s parents obviously welcome media attention, to keep raising awareness about Tony’s situation, so this was unfortunate, to say the least. 

Conclusion

The voice of the person at the heart of this hearing, Tony, was absent. However, from what I heard, there is still a long way to go before Tony can really be described as being “at home”, enjoying the freedoms that it was hoped would be achieved with his discharge from hospital. I hope for him, and for his parents, that things improve over the next year and that the hearing planned for September 2025 will show that efforts being made have borne fruit. 

2. Commentary on this case, by Lucy Series

Amanda and the Open Justice Court of Protection team kindly invited me to comment on this case. I am an Associate Professor at the University of Bristol, and my research is on mental capacity, social care and deprivation of liberty safeguards. I had been following Tony Hickmott’s case in the media and in published judgments, but I did not observe the hearing that Amanda describes here, so I am just basing this comment on her blog post.

Reading this made me feel very sad. Tony’s case was one of the more extreme examples of people with learning disabilities and autism who end up detained in psychiatric hospital settings known as an ‘assessment and treatment units’. Whereas most mental health patients who are ‘sectioned’ under the Mental Health Act 1983 are discharged within a few weeks or months, more than half of all patients with learning disabilities who are admitted to these settings remain there longer than two years, a third for over five years, and over 300 for more than a decade (NHS Digital). Tony was reportedly in hospital for over 21 years (BBC News, 2022). It is largely thanks to the persistence of his parents, the inventive strategy of his legal team and a judge who really cared about the situation, that he got out at all.

It is therefore really sad to hear that Tony is experiencing such restrictive care in the community. Social care can be really restrictive – I call this social care detention in my book. This can happen for a number of reasons. Sometimes it is because it is cheaper to put people in congregate settings, so that care providers can deliver economies of scale through routinising and standardizing care; ‘personalisation’ and privacy are traded off for pounds saved. But that doesn’t seem to be what is happening here. It sounds as if Tony is being supported in what seems to be – legally speaking – his own home. Only it doesn’t sound much like the kind of place most of us would call home. A home is a place where we have a degree of privacy, freedom to move around within our homes, and we get to make our homes by interacting with the material surroundings. Our homes also allow us to connect with others, offering hospitality to our loved ones. A name on a tenancy doesn’t make it truly one’s own home; it is the rights and freedoms one enjoys within it that matters. 

There are some strange, but sadly not unusual, features of this case from a legal and regulatory perspective. Firstly, Tony’s care is being provided by an unregulated provider, and because of this they say that they can only prompt his personal care and not directly support him with it. From a regulatory perspective this is odd – the regulations which specify what activities must be ‘regulated’ explicitly include ‘the prompting, together with supervision, of a person’ within their definition of personal care.  In other words, if the description here is correct, they are already providing an activity that CQC is supposed to regulate. It sounds as if the provider is trying to get registration sorted, so this isn’t a criticism of them. But it is worrying that the council has had to rely on an unregulated provider at all – especially since the care they are providing certainly sounds extremely restrictive. (It would be bizarre, when we think about it, if unregulated providers were allowed to detain people in their own homes, but not cut their toenails…).

The other feature of this case that may become important is that there is some debate about the Court of Protection’s role. Tony’s parents want the court involved, perhaps because they trust the Court after its ability to help pave the way for Tony to leave the hospital.  Tony’s family are worried about the level of restrictions their son is still subject to, they are sad and disappointed that their contact with him is so restricted.  Because Tony is deprived of his liberty in the community in a ‘domestic’ setting the only way to authorise that and give him safeguards is through the Court of Protection. For the public bodies, this is potentially quite a costly exercise, especially if – as here – there are underlying welfare issues and disagreements that the family are asking the Court of Protection to look into. 

One of the challenges is that the Court of Protection has no power to resolve any underlying issues around the care plan. It cannot make CQC register the care provider any quicker. It cannot fix Tony’s kitchen. It cannot change who provides care, or how much the public bodies spend on it. The Court of Protection’s role is – as Lady Hale put it in N v ACCG (2017) – to ‘stand in the shoes of the person who is unable to make the decision… and makes the decision for him’. In other words, just in the same way that other people who rely on the NHS and/or local authorities to provide care and support cannot demand that particular kinds of support are provided, neither can Tony nor anyone (including the Court of Protection) acting on behalf of Tony. This is because the Court of Protection is what is known as a ‘private law’ court, it is not supposed to be there to judicially review the decisions of public bodies.

The Court of Protection is not the only court to be asked to authorise poor quality or even truly grim care plans. Family Court judges are increasingly outspoken about these issues in cases involving children in care. Sir James Munby, retired President of the Family Court and the Court of Protection, recently wrote about this in the Guardian. But although it’s great to see the judges speaking up for people, where does this lead in the end? Nothing can solve the problems the judges are seeing in their courts without the government properly funding social care. 

That all being said… Tony’s care plan seem to be involve things that go well beyond ‘ordinary’ care provision based on the person’s consent. His carers appear (from the blog post) to be restricting Tony’s freedom to come and go from his own home, to move around his own home, and to see his family. These are things the Court of Protection could reasonably want to consider, because they are interferences with the ordinary rights and freedoms that adults expect to enjoy, and they go to the question of whether the deprivation of liberty is necessary and proportionate.  The Court of Protection can also play a powerful role in many cases in cutting through difficult relationships between public bodies and the person’s family, and forcing public bodies to justify and evidence any restrictions imposed on family relationships. To put it bluntly: most people would expect to be able to see their family within their own homes without interference, so the case to justify these significant restrictions on rights to home, family and private life, needs to be made. 

I also wonder about this whole ‘standing in the shoes of the person’ business, which seems to hamper everybody’s ability to challenge a poor care plan. If the person had capacity, there are steps they could potentially take to address it. In theory, if there were potential alternative care providers, one could request a direct payment to pay them, or employ personal assistants directly, or ask an independent care manager to provide this. All the levers and pulleys of personalisation are, in theory, available to the court, ‘standing in the person’s shoes’. The person could also make a complaint, escalating that to the Ombudsman if necessary. They could, technically at least, bring a judicial review if it was felt the care plan did not discharge the statutory duties required of the public bodies concerned. I wonder how often the Court of Protection considers these steps, or at least instructing others (e.g. the person’s legal team) to consider these steps on the person’s behalf?

The reality though, is that in a situation where even the NHS and councils – with all their purchasing power – are having to rely on unregulated care providers, it is likely that coming up with alternative care plans would be a challenge.  The Court of Protection might be standing in a person’s uncomfortable shoes, but it seems it cannot change them. 

Amanda Hill is a PhD student at the School of Journalism, Media and Culture at Cardiff University. Her research focuses on the Court of Protection, exploring family experiences, media representations and social media activism. She is on LinkedIn (here), and also on X as @AmandaAPHill and Bluesky @AmandaAPHill.bsky.social

Lucy Series is an Associate Professor in the School for Policy Studies at the University of Bristol. She researches and teaches mental capacity, disability rights and adult social care law and policy. She blogs at The Small Places. You can read her book – Deprivation of Liberty in the Shadows of the Institution – free of charge here or on Kindle. She is on Bluesky here: @thesmallplaces.bsky.social

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^[1] _{It is very unusual for a ‘P’ (a Protected Party) in a Court of Protection hearing, or their family, to be named publicly.  Usually there is a Transparency Order (also known as an injunction), in place which means that P can’t be identified as a protected party (“P”) in the Court and so (in order to protect P’s identity) neither can P’s family members, nor (often) people who’ve been in court to give evidence, e.g. a manager of a care home, or a social worker, or clinicians treating P in a hospital). There are usually restrictions preventing references to where P lives as well. It’s different in this case because Tony and Pam had already been named in the media before the case began. In May 2019, Pam and Roy had felt so desperate about Tony’s situation that they decided to go to the media and this article in The  Mail in Sunday was published: “Vulnerable man locked in solitary confinement for 10 YEARS: Horrifying case revealed in new report as Health Secretary is finally stung into action, naming the family because at that point, Tony wasn’t a P (Protected Party) in a Court of Protection hearing and was not covered by a Transparency Order. Once Tony became a P in June 2019, neither he nor his family could be named in connection with the case.  In October 2021, BBC News and Sky News applied to be able to name Tony, his parents and where he lives. Senior Judge Hilder granted the application, saying “Mr Hickmott’s parents want to raise awareness of their son’s situation” and “It’s their story too.” Her reasons are set out in the judgment: https://www.bailii.org/ew/cases/EWCOP/2021/63.html}