By Mark Neary, 22nd June 2021
Ten years ago this month, on 10th June 2011, I sat in the Court of Protection as the Honourable Mr Justice Peter Jackson handed down his judgment in the landmark Hillingdon v Neary case.
The Neary in question was my son, Steven, who at the time was 21. He is autistic and has learning disabilities. The meat of Mr Justice Jackson’s ruling was that in keeping Steven away from his home for 359 days in 2010, London Borough of Hillingdon had breached Steven’s rights under Article 5 (right to liberty and security) & Article 8 (respect for private and family life) of the Human Rights Act 1998. He also ruled that the legislation that the Local Authority had used to justify their actions, the Deprivation of Liberty Safeguards in the Mental Capacity Act 2005 had been unlawfully authorised throughout the whole year of Steven’s detention.
Fast forward 10 years and on the day before the 10th June 2021, I was browsing the Twitter feed of the wonderful Open Justice Court of Protection Project. Most days, they list the cases that are due to be heard in the court the following day. My eyes were immediately drawn to one case, listed for the morning on 10th June. One of the parties was the London Borough of Hillingdon and one of the main issues being considered was their use of the Deprivation of Liberty Safeguards for a resident in one of their care homes.
I must admit the coincidence of such a similar case, a decade apart, galvanised me and I volunteered to report on the hearing.
Back in 2011, the head of Hillingdon’s social care department stood on the steps of the High Court and told the press that they have learned lessons from the Neary case. This felt like the ideal opportunity to see if they actually had.
The hearing was conducted remotely. It was a very different experience, watching the hearing in my shorts, scrunched up on my sofa, to being dressed up to the nines in the splendid gothic courtroom at the Royal Courts of Justice. Nevertheless, I felt welcomed and there were no technical issues whatever throughout the one-hour hearing.
The case was about EW, who has diagnoses of dementia and schizoaffective disorder. Now in her early 80s, EW was born and (in part) raised in Scotland and is now adamant that she wants to return to Scotland for the final years of her life. So, this is a Section 21A application.
Section 21A applications are very common in the Court of Protection and the Open Justice Court of Protection Project has blogged about them before. They are effectively reviews of whether someone is lawfully deprived of their liberty.
Sometimes they result in a person being free to leave and to choose for themselves where to live, as in the case of Mr B who was found to have capacity to make his own decision. Sometimes, even though a person is deemed to lack the mental capacity to make their own decision, the court recognises that they want to live somewhere else and makes this possible (as in the case of Re UR, who was supported to move back home to Poland, where she hadn’t lived for more than 40 years). But these cases take time. All through the hearing, I was dispiritedly aware of an 80-year-old woman’s clock ticking.
This was the second Section 21A application that had come before the court for EW. The first hearing took place in 2019, where the judge had agreed with the Local Authority that it was in the best interests of EW to continue living in her current care home. Since that hearing, EW has continued to voice her objection to being in the care home, recently raising the issue of wanting to live in Scotland.
This was a directions hearing and as such largely devoted to making plans about what was needed for a future hearing at which a decision could be made about whether or a move to Scotland was in EW’s best interests. The Local Authority had already agreed to provide everything counsel for the Official Solicitor (Alex Cisneros) was asking for by way of further evidence before the next hearing. The entire hearing consisted of the judge going through an agreed directions order and the judge correcting typos and suggesting a couple of bits of additional evidence that might help before the next hearing. So, although the issue of a move to Scotland was discussed at some length, much of the hearing consisted of the judge going through a list of directions (for example, arrangements for a round table meeting, plans for evidence from the Official Solicitor, an order for a special visitor report, and the date of the next hearing etc). There were no substantive submissions from either party and there was no dispute about the directions.
In my view, Hillingdon was woefully unprepared for some of these discussions in ways that reveal an awful lot about attitudes towards people in state care and the sometimes large chasm between the legal process and people’s ordinary lives.
For example, there was a discussion about whether to appoint an “inquiry agent” to look into whether EW has any relatives or friends presently living in Scotland. One desperately sad fact of the case was that in all the time EW has lived in the care home, she hasn’t received a single visitor. Hillingdon felt that tracing anyone who knew EW would ultimately prove fruitless and were against an inquiry agent being appointed. I suspect that part of this objection was about cost, and Hillingdon felt that an inquiry agent would only duplicate the efforts they’d already undertaken (unsuccessfully) themselves. As with all the directions, there was lengthy discussion about the timescales required to carry this out.
The judge asked for a “pen portrait” of EW. She wanted to get an understanding of EW’s personality – her likes and dislikes, her beliefs, what she does with her time in the care home. The judge reminded the local authority solicitor that this was important so a balance sheet approach could be taken about what aspects of EW’s life could be transferred to Scotland. This pen portrait will be served along with all Hillingdon’s other evidence (including a Care Act assessment, a search for alternative placements in England and consideration of a move to Scotland) in six weeks time.
I think I was muted by the court clerk. I hope I was muted by the court clerk. I wouldn’t have liked my gasp to have been heard as I reacted to the idea that it might actually take as long as six weeks to produce this bit of evidence. Steven’s support workers could knock up a very thorough pen picture of him in 15 minutes. I had the awful feeling that probably nobody has taken the time to find out what EW is really like.
Similarly, and this was a direction from the 2019 hearing, the judge had directed that EW’s room in the care home be personalised. This hadn’t been done. It wasn’t an oversight. It was believed by Hillingdon that personalising her room may cause EW to become agitated. It didn’t sound like the judge bought into this theory and she kept it on the directions list. EW had been clear that Inverness was her favourite place in Scotland. Would it be too time consuming or too upsetting for EW if someone were to print off a photo of an Inverness landmark and purchase a photo frame from Poundland? Small acts of humanity seemed in very short supply.
One of the earlier directions had been carried out. A medication review had been ordered and had already taken place. The outcome was that EW’s medication has been changed and that her “behaviour has improved.” When pushed on what that means, the court were told that EW’s delusions happen less frequently. I’m fascinated by the framing of this. Is a delusion a behaviour? There were moments when she believed that her parents were still alive and that she would see them again in Scotland. I’ll address the mental capacity issue shortly, but there was a sense that this occasional thought of EW’s might come back to bite her.
EW’s wish to end her days in Inverness may not weigh heavily in the best interests decision that will need to be made if the court decides that she lacks capacity to make her own decision about where to live. I worry that the groundwork for that is already being prepared. There was a weariness whenever Scotland was mentioned.
At best, her desired move may be put down as an unwise, sentimental wish; at worst, an example of her delusions. I started to recall that wonderful 1980s film, The Chain. In the final section of the movie, a wealthy, retired judge (aptly) played by Leo McKern learned he was terminally ill and decided to sell his Mayfair home and return to the street he had been brought up in at Hackney. It didn’t end well. Observers may have seen it as an unwise move. But nobody was assessing Mr McKern’s capacity, so he could follow his plan and deal with the consequences of that. So what if EW’s last wish is sentimental? So what, if it turns out that she is no happier in Scotland than she is in Hillingdon? I’ve written many times before (e.g. here) about how mental capacity assessments are weighted heavily against those being assessed. The whole process becomes a head exercise. The person has to demonstrate their reasoning powers; that they can weigh up pros and cons. Even if they can do those things, they then have to have the verbal ability to convey their thinking process to a sceptical outsider. For people like EW, decisions driven by the heart or their gut aren’t permissible.
I may have missed it, but by the end of the hearing, I don’t think a date had been set for the final hearing. The deadlines that Hillingdon requested for each of the directions I’ve listed above added up to a few months. I sat on my sofa after the hearing ended, for over an hour, lost in a kaleidoscope of thoughts. People: real human beings, people in the middle or at the end of their lives. Processes: long, legal processes alongside local authorities who have long-since lost the oft-quoted mantra from Mr Justice Munby that the State is the servant and not the master (para. 52, A Local Authority v A and another  EWHC 978).
I don’t know whether EW will ever get her return to Scotland. I doubt it. The odds couldn’t be more stacked against her, despite the humanity of the judge.
I hope, at least, she lives long enough to see a resolution to this inhumane circus – and maybe even gets to see Inverness again.
Mark Neary is a counsellor, writer, campaigner and trainer. He’s the father of Steven Neary, a young man with autism and severe learning disabilities, who was at the heart of a landmark Court of Protection case (Hillingdon v Neary). He blogs here and is the author of Get Steven Home (here). He tweets @MarkNeary18
Editorial Note: NEWS FLASH: We’ve just heard that the next hearing (which won’t be the final hearing at which a decision about a move to Scotland is made, but a case management hearing) is scheduled for 2pm on 2nd September 2021 before DJ Ellington, as a remote hearing, with a time estimate of 2 hours.
Illustration by Northlimitation, Public domain, via Wikimedia