2.2In the light of that successful outcome after a truly horrendous year when my family was needlessly torn apart, you’d expect my view of the Court of Protection to be a positive one. And it is, I have nothing negative to report about the experience, although I have concerns about accessing the court in the first place.

2.3Mr Justice Peter Jackson quoted the Magna Carta in his introduction to his judgment in our case. His reference induced a powerful emotional reaction in me and from commentaries on our case, I know that it resonated with a lot of people. I can see why. Issues that the Court of Protection regularly address usually involve matters of liberty, best interests and the role of the state in the lives of incapacitated people. Steven’s case rested heavily on all those things and as I’ve become more acquainted with the Mental Capacity Act (MCA) 2005, I can see that what was articulated in the Magna Carta is relevant to our lives today. Thank goodness. In Steven’s case, the local authority behaved appallingly and a running thread of the judgment is their lack of frankness towards Steven and me. The judge concluded one part of his judgment with the sentence that, had Hillingdon had their way: ‘Steven would have faced a life in public care that he did not want and does not need’.2[2011] EWHC 3522 (COP) para 28. Since our case moved into the public domain, I have been approached by many families where what nearly happened to Steven, has actually happened to them. Sadly, more and more people are encountering what Steven and I had to face – challenging state decisions about incapacitated people is seldom successful through internal processes. This is for a number of reasons. First, the family is always outnumbered by large multi-disciplinary teams of professionals. Second, often, the real agendas are withheld from families, making challenge impotent. In our case, the local authority led Steven and me to believe that we were in a ‘transition home plan’ for six months. Although we were unhappy about the timescale, there did seem to be light at the end of the tunnel. But as Mr Justice Peter Jackson held:

2.5Once Hillingdon’s real agenda was exposed on 8 July 2010, I knew that the only possible way of challenging their plan to move Steven to a hospital in Wales was through the Court of Protection. In his judgment, Mr Justice Peter Jackson declared that the onus was on the local authority to bring the matter before the court, but throughout the year, I was repeatedly told by Hillingdon that if I disagreed with their plans, it was down to me to instigate proceedings. I know differently now, but at the time I believed them. It is very common, and a deeply unsettling fact for many families, that when their children are ‘transitioned’ into adult social care services, the parents are effectively side-lined. My twenty years of experience of Steven counted for nothing in the year that Steven was in the unit – in one document, I wasn’t even recognised as his next of kin, that role went to his ‘care champion’ within the unit. So it’s not surprising that many families, like me at the time, don’t realise they can challenge state decisions, far less know how to go about it. When the DOLS were authorised, I was told that I was Steven’s ‘relevant person’s representative’ (RPR) but did not have a clue what that meant in practice. All I knew was that, by this time, I had been attending meetings for four months and had absolutely no say in any of the care planning for Steven’s future. My role as Steven’s RPR was never fully explained to me. If it had, I would probably have triggered the court process myself much sooner.

2.6Once the penny dropped in July 2010 that the matter could only be resolved through the Court of Protection, the next big hurdle was accessing the court. I used the Internet to put out a call for help, and someone sent me a list of solicitors who might be prepared to take our case on. It was a dispiriting exercise. Most of the firms I contacted confessed to insufficient knowledge of the Mental Capacity Act to take the case on. The vast majority didn’t return my calls. I had a hopeful few days with one firm until they told me that I didn’t qualify for legal aid. I didn’t know it at the time, but under the DOLS legislation I was automatically entitled to legal aid as Steven’s RPR. And that was just me – I had not been told, or considered, that Steven, as the person being deprived of his liberty, was entitled to legal aid. That was partly because (as the judge found) they had failed to press for Steven to be allocated an independent mental capacity advocate (IMCA). This is someone who could have led professional backing for Steven’s case and opened up legal doors that had remained firmly closed to me. Even when an independent psychologist reported on the lack of advocacy for Steven or me on 16 August 2010, his report was deliberately suppressed (a fact that the judge described as deplorable6[2011] EWHC 3522 (COP) para 114.) and it took until 29 October for Hillingdon to appoint an IMCA for Steven (coincidentally, the day after they submitted their own court application). When the IMCA came on board, the effect was transformative. Three weeks later we had a solicitor and three weeks after that, we were in court.

2.7I have told the story of how we eventually got a solicitor many times, and people often think I’ve exercised some dramatic license in the narrative. A member of the Facebook group I set up is an expert in the DOLS and offered to contact a law firm in Cornwall (bear in mind, we live in west London) who she felt had the necessary experience to take our case on. On the day she contacted him, he happened to be at, of all things, a DOLS conference in London. It was a turgid event and he was prepared to bunk off for the afternoon and travel across London to meet me. Three weeks after this unexpected meeting, we were in court and Steven was released.

2.8I know that Steven and I were blocked every step of the process by Hillingdon, but there must be a better, quicker way of accessing the Court of Protection. It took from 15 April 2010 (the date the first DOL was authorised) until 26 October 2010 (two weeks before the fourth DOL was authorised) before Steven got an IMCA. It took until 22 November 2010 before we found a solicitor. When it comes to the issue of the liberty of an incapacitated person, I would suggest that this is hardly enabling the detained person ‘to have the lawfulness of his detention reviewed speedily by the court’ as required by Article 5(4) ECHR. I accept that the main reason for the delay was the approach adopted by Hillingdon, which was severely criticised by the judge, but actually getting through the doors of the Court of Protection for a family member can be extremely difficult without legal representation.

2.9My apologies if I have laboured the point, but when things get as serious as our case had become, the MCA 2005 only has a value if the people who fall within the scope of it are able to access justice. To have that access either effectively blocked for eleven months or for it to be downright inaccessible, has major implications for the court that was set up to help the most vulnerable people in our society.

2.10Even if it would not help directly with getting to court, it would definitely help if the detained person or their representative was allowed to approach the IMCA service directly, rather than having to rely on the supervisory body who authorised the DOL to refer you for one. To put it bluntly, if the local authority do not want you to have external advocacy from an IMCA, you are not going to get one. As I write this chapter, the House of Lords have just published their recommendations following their review into the MCA 2005.7Mental Capacity Act 2005: post-legislative scrutiny, Select Committee on the Mental Capacity Act 2005, Report of Session 2013–14, HL Paper 139, published March 2014; available at: www.publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/139.pdf. One of their proposals is that P or his representative be given direct access to IMCA services. That can only be good news if the recommendation is taken up.

2.11On a happier note, at the first hearing in the Court of Protection on 21 December 2010, Steven was represented by the Official Solicitor and I had my own counsel. Mr Justice Mostyn terminated the current DOLS authorisation and allowed Steven home. On Christmas Eve 2010 Steven returned home – 359 days after he walked out of the front door, setting off for three days’ respite.

2.12Of course, the scrutiny didn’t end with Steven’s return home. Between then and the hearing in February 2011, we had the visits from the two court-appointed experts (one a psychologist; the other a social work expert), plus a further visit from the Official Solicitor. Although things at home had been going very well since Steven’s return, I found these visits very anxiety-provoking. Once again, I felt like I was having to prove and to put a case for the most important, fundamental aspects of Steven’s life, and if I was unable to present his life properly, the consequences could have been dire. The local authority had not revised its ‘care plan’, so a move to a hospital in Wales was still a possibility. I felt that if one little thing was misinterpreted, or if the experts did not share the view of Mr Justice Mostyn, then the whole nightmare might start up again. I know that for the Court of Protection to make a thorough, robust decision it needs as much information as possible, but it seems to me that life under the microscope applies more to the learning disabled than any other member of our society, and it’s terrifying. I’d had a year of Hillingdon interpreting every aspect of Steven’s life negatively. Steven loves engaging in endless conversations about his favourite things – Mr Bean, Take That, flavours of crisps – but at the unit, these conversations were viewed through a negative, judgmental prism. His love of Mr Bean was seen as obsessive and obstructive to him engaging in more ‘acceptable, mature interactions’. The thought that the court-appointed psychologist might share that view scared the hell out of me. Thankfully, he didn’t, and when we returned to court in February 2011, the order for Steven to live in his own home was made permanent. The Official Solicitor then pushed for the lawfulness of Hillingdon’s actions throughout 2010 to be judged and the judge agreed with him. All of a sudden, the spotlight was off Steven and me. We no longer had to put a good case – that task now fell on Hillingdon.

2.13Two weeks before the hearing before Mr Justice Peter Jackson at which the lawfulness of Hillingdon’s actions were to be examined, we encountered another setback. Because Mr Justice Mostyn had terminated the DOLS authorisation, I was no longer entitled to legal aid. Steven would still be represented by the Official Solicitor, but I lost the team that had been so successful in December 2010 and February 2011. This meant that I had to appear as a litigant in person. Thankfully, the Official Solicitor put together a fabulous case, because it would have been impossible for me on my own to cover all the legal arguments that the case before Mr Justice Peter Jackson was built on.

2.14Obviously, the most important aspect of the entire case was to get the DOLS authorisations withdrawn and allow Steven to return home, but as events have demonstrated since the case, the importance of having the DOLS legislation and process examined and the actions of the supervisory body looked into has had a major impact across the country in terms of practice. Since 2011, I have regularly been invited to speak at events involving social care, legal and best interests professionals and have seen how our judgment has shaped the way many of these professionals work. I’m not sure the case would have had that impact if it had ended in February 2011 with the termination of the authorisation and the decision to allow Steven to live at home permanently.

2.15Finally, I am regularly asked about the publicity our case attracted (and still does) and whether it has been in Steven’s best interests. In the first instance in 2010, I turned to social media and the wider national media out of desperation. The motivation was to find some guidance and support which must surely have been in Steven’s best interests. I was always confident that I was acting in Steven’s best interests but approaching the press was quite a dramatic manoeuvre. I was also fairly confident that I could shield Steven from any external situation that he’d find difficult to cope with, as I had done all his life. I knew that I would never put him in a public situation that would cause him anxiety or distress. I can honestly say, as I did in court, that I don’t think Steven has been affected at all by the publicity. He continues to live his life in his own idiosyncratic, Steven Neary way. He is interested whenever we appear in the press or on the television, but then gets back to watching Fawlty Towers or whatever he is doing at the time. For me, the most important thing about the court’s decision to allow the case to be reported openly is that it has enabled people to engage with a very human story. It’s a son and father story. And because son and father were identified as Steven and Mark, the judgment clearly comes alive as a story of two human beings caught in a horrendous situation. When I speak publicly and tell the story, people laugh, cry and rage because they connect with the three-dimensional characters at the heart of the story. I met a judge a few weeks back and he said it was a very ‘filmatic’ story. I’m not sure that could happen if we were ‘SN and MN vs A local authority’. The learning disabled are a pretty invisible, unacknowledged section of our society and I believe it is important for our stories to be told. I continue to write about our lives because if attitudes are going to change in the future, we have to move away from the mindset that sees people like Steven as not quite human. Steven Neary is a fully rounded human being – SN (or P) is not an object or a case study. And that for me is ample reason to have our case in the public arena and for the push for the Court of Protection to be more open in its reporting of its cases. Mr Justice Peter Jackson’s judgment is often referred to as ‘landmark judgment’. I am delighted that it is used as a key reference point in social work, legal and best interest assessor training. But more importantly, I am glad that it is in the public domain to help other Stevens and other Marks who suddenly find themselves in the same awful situation we got trapped in, back in 2010. On a weekly basis, I am contacted by people with relatives trapped in care homes or hospitals where either the person or their family want them to live at home. Worryingly, in many cases, there is no DOLS authorisation, so there is no way of challenging the detention. I always suggest people push for a DOLS authorisation as at least that will give them the opportunity to take the matter to court. Hillingdon v Neary has given hope to lots of families and I am proud of that. If our experience helps just one person, that can only be a good thing.