The Mental Capacity Act and Us
The 27th September 2017 is the 10th anniversary of the introduction of the Mental Capacity Act and as we din the lights and light the candles to mark the occasion, I have been asked to offer up a completely biased take on the last 10 years.
This is not an “everything you need to know about the MCA” type of post. It is a subjective A to Z of the Mental Capacity Act including personal experiences; stories and people that have inspired me and stories that are appalling and show how open to abuse the Mental Capacity Act can be.
Coincidentally, the Mental Capacity Act came into force a month before Steven left school and was transitioned into adult social care services. So for the whole of Steven’s adult life, the Mental Capacity Act has been the backdrop to our lives and on our stage has been a Greek Chorus of social workers, psychiatrists, best interest assessors, lawyers, advocates, positive behaviour support experts, care planners and even a pair of High Court judges. Over 10 years, we have assembled a cast of 1000s just to enable Steven to live an ordinary, fulfilling life.
Over the past 10 years Steven and I have experienced the good, the bad and the complete madness of the Mental Capacity Act. Our first encounter with it encompassed “the bad” when Steven was kept away from his home for 358 days and deprived of his liberty in an assessment and treatment unit. It took the intervention of a Court of protection judge to get Steven back to his home and to find that all four DoLS authorisations served on Steven during that 358 days had been unlawful and that his Article 5 and Article 8 Human Rights had been breached. Justice Jackson ruled that the Local Authority had turned “the spirit of the Mental Capacity Act on its head with a code designed to protect the liberty of vulnerable people being used instead as an instrument of confinement”. 2010 certainly encapsulated “The Bad” of the MCA for us.
Perversely, the “good” also came out of the same situation. The fact that the Deprivation of Liberty Safeguards were in place, albeit unlawfully, enabled us to access the court. A DoLS entitles the person detained to legal aid and representation by the Official Solicitor and without this, I have no doubt, Steven would still be in the hospital in Wales that the Local Authority planned to send him to.
Coming right up to date, we’re recently encountered the “madness” of the Mental Capacity Act. Following the Supreme Court ruling in the Cheshire West case (see C), we now have Community DoLS – a deprivation of liberty in the person’s own home. As Steven has assessed needs of 24 hour 1:1 support in his home and 2:1 support when he goes out, what was once careful care planning has now become a deprivation of his liberty. The gilded cage prism through which his support is now viewed sees a trip with his two support workers to see an Abba tribute band as a deprivation of his liberty. We have surely lost the plot when a piece of legislation that was introduced after a man was found to have been detained unlawfully in Bournwood hospital where he was restrained by hospital staff standing on his feet now views a person being supported to walk to a sweet shop to buy some crisps through the same lens of a deprivation of liberty. I’ll quote Mr E, the stepfather of the man held in the Bournwood case – “DoLS used to be about getting people out. Now they’re about keeping people in”. Madness!
So, without further ado, let’s move on and look at some of the key features and stories from the 10 year history of the Mental Capacity Act as we compile a very subjective MCA alphabet:
A is for Assessing Capacity.
Thankfully, the A & B of the alphabet helps us to address the two foundation stones of the Mental Capacity Act. In fact Principle One of the Mental Capacity Act tells us that each adult must be assumed to have capacity unless proven otherwise. It means that a professional cannot make a decision on behalf of a person unless they have assessed their mental capacity.
Another layer of protection is that the assessment of capacity has to be decision specific, which basically means that you cannot have an across the board judgment of lacking capacity. A person may lack the capacity to make one decision but have the capacity for another. Also, the MCA tells us that capacity has to be assessed each time a decision is needed, meaning that the person may lack the capacity today but may have found the capacity in six months’ time.
Steven has had two mental capacity assessments since 2010 and both had typical idiosyncratic Steven outcomes. The first occurred in the year that Steven was held in the Assessment and Treatment Unit and the point of the assessment was to determine whether he had the capacity to decide where he wants to live. No matter that several times a day, he would say to whoever was listening that he wanted to go back home. No matter that he would greet the manager of the unit every morning by singing Queen’s “I Want To Break Free.” And no matter that Steven escaped form the unit several times whilst he was there and tried to find his way back home. None of this counted as a gauge of his capacity and one day we attended an appointment with an assessing psychiatrist. All went swimmingly and no matter how each question was phrased, Steven was able to say that he wanted to live in the Uxbridge house (his home). Unfortunately, he came a cropper when the doctor asked him a comparative question – which is better: your home or the residential home? Steven sees the word “better” as what happens to us after we’ve been ill and got confused about the word being used in this meaning. Although Principle 2 of the Mental Capacity Act states that the person must be supported in the decision making process, when I tried to help Steven out by rephrasing the question, the psychiatrist asked me to leave the room as he saw my intervention as “leading” Steven. That was the end of the capacity assessment and in due course it was decided that Steven lacked capacity to decide where he should live.
The second capacity assessment occurred three years later. By now, Steven was back at home but we were faced with becoming homeless. The Local Authority had decided that the only way we could be rehoused is if Steven became the tenant and I am just classified as his live in carer. However, in order to get the ball rolling with a housing application, it was decided that Steven needed to be assessed to see if he had the capacity to manage a tenancy. My hunch was that the outcome of this assessment was probably more clear cut than the 2010 one! But after the humiliation of the 2010 assessment, I decided to sit this one out and leave it up to the support workers to be with Steven. When I got home, I asked Steven how it had gone and he very excitedly told me that “C was doing Pet Shop Boys talking”. Later the penny dropped and I realised that in order to gauge capacity she had talked about tenants and rent: two words that feature large in Steven’s Pet Shop Boys’ compendium. Needless to say, he didn’t pass that assessment either.
I have one big bugbear with the idea of a mental capacity assessment. I agree with the principle because, done correctly, it should protect against random professional decision making. Sometimes, as we found in 2010, it can be worse than random and the assessment can be manipulated to meet a pre-determined agenda. The bugbear is that I feel the mental capacity assessment in itself can be discriminating towards the disabled person. The very nature of the assessment means that the person has to demonstrate that they can take a piece of information, absorb it, weight up the pros and cons and then come to a decision. It is a purely, cognitive, head centred piece of work. Yet for the non-learning disabled person, we are allowed to use other organs of our bodies when making a decision. How many people have made a decision purely based on what our heart is telling us to do? How many of us rely on our gut instinct to inform our decision making process? Neither of those very valuable containers of information is afforded to the learning disabled person during a mental capacity assessment. And in my view, that is unfair. Already disadvantaged, they are expected to show a mental process that others would never have to do.
I’ll finish this section with my all-time favourite piece of decision making rationale. It was shortly after one of Steven’s assessments that I overheard the following conversation on a bus. It was around Christmas time and I remember thinking how lucky the woman was that she never had to encounter Steven’s assessing psychiatrist:
Betty: “I still can’t decide if we’re having turkey or pork”.
May: “You’re cutting it a bit fine”.
Betty: “I like the taste of pork but I’m not too keen on the smell”,
May: “Have turkey then”.
Betty: “Bob’s gone off it. Do you remember that year he was queer on it?”
May: “We’re having a duck”.
Betty: “What you having duck for?”
May: “My mother loved a nice duck”.
Betty: “Ah. There you go then”.
An analysis of their decision reasoning:
No to pork – unpleasant smell.
No to turkey – turned Bob queer.
Yes to duck – mother loved it.