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Schedule to be inserted as Schedule AA1 to the Mental Capacity Act 2005

Part of Mental Capacity (Amendment) Bill [Lords] – in a Public Bill Committee at 10:15 am on 22nd January 2019.

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Photo of Alex Norris Alex Norris Labour/Co-operative, Nottingham North 10:15 am, 22nd January 2019

It is a pleasure to follow so many colleagues making so many eloquent points about just how important advocacy is. I think that all of us in this room recognise that. An individual up against powerful organisations, across all sectors, is in a very uneven power relationship. If we then add in perhaps a lack of knowledge of how systems and services work, they might need support. Certainly, when they do not have capacity either, there is a clear need for some sort of support.

Sometimes we might read, whether in our postbags or online, that we in this place do not get it on an issue. On this issue, we definitely get it, because every day all of us at some point are battling the local council, the health service or the Home Office—that feels like a regular one—in advocating, as Members of Parliament, for people who do not know the system the way we do. They might look at something and think, in a natural justice way, “Hey, this isn’t right” or “I’m not happy about this,” and we provide extra support and learned knowledge to try to help them through that.

We do get it, and I hope that we can layer that into this very important legislation. We know the sensitivities of the individuals we are talking about. The whole purpose of the Bill, of our being here for the third day and of the time in the Chamber as well, is to take a system that, at the moment, does not work in terms of system capacity and has in the past created outcomes for people that we would not wish for ourselves, our loved ones or anybody, and to try to get something that does work and is robust. Fundamentally, we would always want to know that, as a result of what is decided by Parliament in this legislation, people living in Nottingham, Bristol or Birmingham, with relatively similar circumstances, would have similar outcomes, irrespective of the fact that the person in Nottingham had an adult child who was very active or even a DoLS specialist and the person in Bristol had no one. We would want, irrespective of those circumstances, that those people got consistent outcomes, because that is what a fair system means.

If we take away advocacy as a default, we get into the fundamental question of whether families, including active families, would even know to know that they could have an advocate. If the quality of the engagement with the responsible authorities is not good, for whatever reason—that has sometimes happened in the past—would the family know that they could ask for an advocate, or that there might have been a best interest assessment and a judgment that, given that the family were around, advocacy was not necessary?

To follow that idea for one more step, we have heard from the Government on previous amendments that it is not enough just to rely on the family. Sometimes the heart can rule the head in families. They might make the judgments that they would want to be best for their loved ones, but those judgments might not actually be best for them. Again, some independence and experience in the system would seem to be an improvement.

I will illustrate my point with an example, kindly provided by VoiceAbility, the advocacy service. An individual, Jo, was referred to VoiceAbility in 2016. She was 56 and a lone parent, and had a diagnosis of alcohol-related dementia. She had been in hospital for detoxification and was discharged in 2015 into a nursing care unit. At the time of that admission, she was extremely agitated and anxious, and reluctant to engage. She spent long periods sleeping, was lethargic and had little motivation. It was obvious to the advocate who then became involved that Jo objected to living in the setting. Her case was of course subject to DoLS.

Jo was at that time the youngest resident of the nursing home, and did not have the same complex needs as her fellow residents. She informed the advocate that living in the home had led to decreased contact with her family. She felt that that was because of the environment that she was living in, and she wanted that to be taken into consideration. The advocate informed Jo about her right to make a challenge in relation to DoLS, which she was keen to do, and supported the process, helping Jo to understand what was going on, initiating the section 21A challenge, and continuing to engage with Jo and help her engage with her legal representative to make the best case.

In 2017, the case was heard at the Court of Protection and a decision was made for Jo to move from nursing care to supported accommodation. She was able to see her potential new home before moving, and was supported by the advocate and by family and friends. On getting a back payment of benefits, she was able to purchase new items for the accommodation to make a home there. The advocate visited her after the move and learned that she was happy. Family were coming, Jo was getting more access to the community, and staff were supporting her to cook meals and go to the shops. She was also being supported to take up hobbies and increase her fitness.

That is one person’s case and it was transformative in her life. The impact of the advocate was extraordinary. The circumstances may be specific to the individual, but we can understand how that story could happen. We have been talking about how people with diminished capacity, caused by things that have happened in their life, can present as agitated, awkward, passive or lethargic in a way that would make someone say, in the moment, “This person is not very engaged or interested.” The purpose of the amendment is to ensure that in such cases—where at the time of the best interest judgment someone appears too awkward to deal with, or not interested, or as wanting only to stay in bed all day—a judgment is not made that then means the person is forgotten about for the rest of their life.

That is the root and substance of the measure. We need some extra independence in the system—someone who has the responsibility to go in to help, to talk and to try to engage the person, even if they are a bit lethargic. The advocate did that for Jo, and numerous Members have given accounts of that happening. There is a compelling case for switching the default from a best interest judgment to an “everybody” judgment, unless there is a strong reason why the person in question would not want one.