I do not believe that I am indifferent, nor have I ever been, in respect of issues affecting the most vulnerable adults within our society. By the very nature of my job, I am not indifferent. I checked the dictionary – ‘Having no particular interest or sympathy; unconcerned.’ I’m full of interest and sympathy and quite frankly, very concerned about these issues.
I confidently told a client recently that I had never ‘lost’ a challenge to someone’s placement authorised by the Deprivation of Liberty Safeguards. I’ve just managed to see him moved to a placement closer to his home after 6 months in a rehabilitation unit he hated being in, located miles away from his family. We are now well on the way to ‘proving’ (the joys of rebutting the evidence that has rebutted the presumption of capacity…) that he has capacity to make his own mind up about where he lives and receives care. I work hard to empower adults to make their own mind up and if they really can’t because the presumption of capacity really is rebuttable, I use all I can to argue them to a position closest to what they want. My clients are rarely disappointed.
Trying to work out how I can take my first steps to being part of #JusticeforLB, looking at Connor’s manifesto I realised that where I can and do make a difference is here: ‘Prevention of the misuse/appropriation of the mental capacity act as a tool to distance families and isolate young dudes.’ I could write books on this topic and have hinted at it elsewhere in posts over the past 18 months. It infuriates me when the MCA, ‘best interests’ and ‘safeguarding’ is cited as justification (often without evidence to back it up) to keep vulnerable adults away from their loved ones, often at times when they need their support the most. I spend a lot of my time trying to pick this apart for my clients; often to success, but not without a lot of sadness and distress on the way caused by the very process created to ‘protect’.
The purpose of me blowing my own trumpet is to illustrate that by the very nature of what I do, and the effort I put in to achieve results for my clients, I don’t believe that I am indifferent.
In July last year I was referred (by the incredible Lucy Series) to Sara’s blog: ‘My daft life’. The day I visited Sara’s site was 5 July 2013 and what I read made my heart sink straight into the pit of my stomach.
‘Our beautiful, hilarious, exceptional dude was found unconscious in the bath in the unit before a planned trip to the Oxford Bus Company.’
Like everyone I felt terribly sad and shocked for Sara and her family. I started to follow Sara on twitter shortly after, I read a couple more of her posts and I learned that her son had died due to the indifference of a system we expect to protect and care. We later learn it was preventable (the stomach sinks even further). Scrolling back through some of the previous posts, I realised the efforts she had to go to in order to see her son, to give him any semblance of the normality they had shared as a family for the majority of his life. It sounded similar to many of my cases, and many of the cases you read about in Court of Protection judgments. But the way it ended was not the same. Connor missed out on the chance to go back to his family because he was left in the bath. Alone.
I then didn’t do anything else. I didn’t engage with Sara on twitter. I didn’t tweet about #justiceforLB and I didn’t get involved with the movement that was so rapidly sweeping across social media in my world.
I saw it. I didn’t engage. I have recently developed a gnawing feeling that by not engaging in the way I do with other campaigns and issues in my world (a mental capacity, mental health, health and social care law world) by blogging, tweeting and chatting about it, I was indifferent to Connor’s death.
So, to make sure that anyone reading this can question their indifference, this post is for you, and for Connor and Sara. It is also for Nico and his mother and for everyone who is working so tirelessly to obtain #justiceforLB and #justiceforNico and justice for just about everyone who falls victim to the system that is supposed to protect, empower and care for learning disabled dudes.
This post tracks the period of 8 days in June – from day 1 when I recognised my indifference, accepted it and then did something about it.
The next stage was to make sure I got a piece ready in time to contribute to the #107days campaign. I’ve just made it, but as Sara has assured me on several occasions; it is never too late.
So, I dedicate this post, in the nick of time, to the final day of #107days, almost a year to the day I read about Connor and to the fight that many, many family members have on their hands in respect of their loved ones.
Day 1 – the LALY awards:
I was a finalist in the Social & Welfare category of the Legal Aid Lawyer of the Year Awards 2014 and therefore had the joy of attending the ceremony where I was surrounded by many of the legal aid greats that I had ‘grown up’ reading about, hearing about and seeing their names in judgments and in the press. See my colleague, Jo Burton’s post where she applauds legal aid and some of the awesome people we saw.
Amongst all this, we heard about Charlotte Haworth Hird and how she had successfully won an independent investigation into Connor’s death. I didn’t know that and became acutely aware that I really should have done. See, I knew that the Trust had produced a report, I knew that Sara was not happy with it, but I hadn’t read the report and I hadn’t engaged in the social media storm that filled my twitter feed daily. That evening, I tentatively drafted my first ‘#justiceforLB’ tweet congratulating Charlotte. I was interested.
As I’ve said above, I knew about Connor and I knew about the campaign #107days. I’m ashamed that I didn’t know what it was all about. Until that first tweet, I’d not read further than those first few posts back in July 2013.
I was starting to move away from indifference. It felt good.
Day 6 – #107days day 87: Swan Advocacy Conference in Trowbridge – ‘Statutory Safeguards: Protection or Control. The role of independent advocacy in finding the balance’
Jo and I were asked to present a solicitor’s perspective on this question. We chose to present a discussion entitled: ‘Protect and Empower: a legal perspective.’ The reason we chose that is because the basis for much of the domestic legislation used to protect and / or control a vulnerable adult (depending on which way you look at it) is based in Human Rights legislation, most of which is founded in caring, protecting and empowering citizens.
We decided to talk about empowerment as we will often use the Mental Capacity Act 2005 to promote someone’s ability to make life-changing decisions themselves, or at least have a pretty big say in what they want to happen about them. We often use this in our work to as a tool to counter decisions that to the individual feel paternalistic, over-protective and controlling, in order to support his or her aims, wishes and feelings. The role of an advocate in these types of situations is hugely important and we felt that by sharing the legal framework with advocates, they would be more confident to empower those that they support.
The day was ably chaired by Mervyn Eastman, in whom I know I have made an ally in the fight against the cuts to legal aid for those who most need it and who kept the day to order, and provided a wonderful touch of sensitive humour at the times when it was most needed. I also met Graham Enderby (a genuinely lovely man) – the foster carer of Mr HL –whom we have to thank for the Deprivation of Liberty Safeguards in the UK. It was incredible to hear him bring alive the man behind the case that as a lawyer, I know so well.
To end the day, which quite frankly was a true show of the passion, love and dedication professionals in this world have for the work we do in such difficult financial times, Dr Noelle Blackman presented on the issue of ‘Death by Indifference.’
This excerpt from Swan Advocacy’s website summarises it better than I could:
‘Finally Dr Noelle Blackman from Respond ended the conference with an incredibly moving presentation on the dramatic consequences that ‘indifference’ can have on the lives of people with a learning disability – particularly in assessment and treatment units. Noelle began the presentation with a beautiful montage of pictures showing Connor Sparrowhawk at his happiest – surrounded by his loving family having fun.
Noelle went on to highlight the tragic cases such as Connor and Nico which demonstrate the tragic impact of indifference.’
As the tears fell whilst watching the montage for the first time, I truly accepted that I had been indifferent to this campaign and to this social movement (because I really believe that it is that!) for the past 11 months.
Well, no more I thought. On the train home from that event, I tried to rationalise my inaction. Questioned why I didn’t get involved sooner. I started to have some answers, but the Eureka moment didn’t come until Day 8 of my journey.
Day 8 – Face up to your mistakes and the DOLS conference
The week ended with a trip up to London to attend Cardiff Law School’s Deprivation of Liberty Safeguards conference. It. Was. Incredible. It was fascinating to see Lucy (of The Small Places) and Dr Phil Fennell give our DOLS regime a ‘Human Rights Act Health Check’ (I think it is a little unwell) in such a masterful manner, to pick up tips about how I could apply Article 8 more frequently in my Court of Protection cases, and generally just to be surrounded by LOADS (and I mean loads) of professionals involved in the world of the MCA and DOLS. I also got to meet Mark Neary, see Graham again and I was able to meet and speak to Sara. What a week of social welfare law ‘celeb stardom!!!!’
Paul Bowen QC (a lawyer I hold in very high regard) dedicated his talk on that day to #Day89 and that gave me the green light to fully appreciate that there was no need to be worried about holding back any more.
Never one to do anything particularly quietly, or reverently, what I did about it was apologise to Sara. And not in the way some of us in the days of advanced technology apologise over text, twitter or email, but face to face. I had the opportunity so why not take it? I had the real privilege of meeting Sara and telling her about my indifference. I’m sure I garbled it and I am sure it made me feel a lot better than it did Sara, but there we go – I had owned up and started to do something about it. But I didn’t want it to end there.
I promised to write about it and although it has taken some time – here it is.
Day107 – Why and what next?
So – why was I indifferent? Why was I seemingly unconcerned with the campaign (I don’t think you’ll get me to admit I had no sympathy) and why didn’t I have any particular interest in getting something out there sooner? I think it was based in fear. A reluctance of being over political on social media and worrying how that might somehow interfere with the work I do.
Every organised event I attended within those 8 days exposed Sara’s campaign to me through professionals, ranging from my peers from the legal profession, academics, counsellors through to those who have experienced tragic loss and family trauma by the indifference of services. That gave me the confidence to step away from my fear and the indifference and do something about it. I thought owning up would be a start. This post was the next step and I have some ideas about the next thing to do…
But for now, I leave you with this. Throughout those 8 days I came to accept that whilst I might have initially been indifferent to this particular campaign through fear and some selfishness, overall, I’m not indifferent to the cause. On (my) Day 6 the Government published it’s response to the House of Lords Select Committee Report on the Mental Capacity Act 2005. This is not the post to be dealing with this report in any detail, but suffice to say I think that the government has quite a few more days of self discovery to convince us that it is no longer indifferent to improving the lives of the most vulnerable within our society – particularly the lives of learning disabled dudes.
Educating those who need to know about the MCA is one thing – action is quite another. Day107 is only the beginning.