The advocacy providers: 5th Evidence Session of the Select Committee on the Mental Capacity Act 2005

It’s hard to keep up in legal capacity land these days, what with the Irish Bill being published, this rather marvellous report on legal capacity from the European Union Agency for Fundamental Rights and Munby’s transparency drive. But, still, better late than never. Last week the Select Committee on the Mental Capacity Act 2005 (MCA) heard evidence from advocacy providers, including Steve Gray (from Asist), Elyzabeth Hawkes (from PohWER) and Jonathan Senker (from VoiceAbility). The session primarily focussed on a form of statutory advocacy created by the MCA – Independent Mental Capacity Advocates (IMCAs). The Chairperson was Lord Hardie.

This evidence session did prompt a little twitter rant on my part in relation to the role of IMCAs in accessing the Court of Protection under the deprivation of liberty safeguards (DoLS). The gist of it – as I’ve written about before – is that I am concerned that not all IMCA providers appreciate that it is their job to help people exercise their rights of appeal against detention.  Nothing under the MCA or Article 5(4) ECHR says that people only have appeal rights where it’s in their best interests – and there are a welter of cases about legal capacity which point to the contrary (Shtukaturov, Stanev, DD, Kedzior, Sykora, Lashin and more...). Moreover, there are also ECHR authorities which say that a person’s rights of appeal against detention don’t rest on their case having merits, and there are cases which say that a person’s access to effective remedies in matters like appeals against detention and declarations of incapacity absolutely should not be resting on the individual judgment and discretion of public officials…  In the context of detention under s2 Mental Health Act 1983 - which has no automatic referral mechanism to the Tribunal - Lady Hale noted that the right to bring an appeal against detention under Article 5(4) must be 'practical and effective', meaning that 'every sensible effort should be made to enable the patient to exercise that right if there is reason to think that she would wish to do so'.  I can think of no sensible reason to distinguish the DoLS from this general proclamation, especially since the case was about a person who 'lacked capacity'.  If IMCAs aren't the ones who are supposed to make every sensible effort to help a person exercise their appeal rights, then who on Earth is?  The detaining authorities?  Should it just be left up to families to rock the boat?

Perhaps I’m being unfair, but comments to the effect that it’s a shame the DoLS don’t have an independent element like the Tribunal under the Mental Health Act 1983 had me holding my head in my hands and shouting ‘There IS an independent element. It is called the Court of Protection. And YOU are meant to help people to get there!! Read s39D(8) MCA!!’ Part of the difficulty, I suspect, is the the language of the statute under s39D around when an IMCA must help a person to challenge their detention is somewhat diluted in the DoLS Code of Practice, which merely comments that they may.  Meanwhile the duty to refer to an IMCA under s39D has been interpreted by the code in terms of when a person requests one - not when it appears to a supervisory body that without the help of an IMCA that person would be unable to exercise their rights of appeal and review.  Which - given the difficulty most people would have in understanding their rights under the DOLS and navigating the appeal appeal mechanism - must be most people.  That, I suspect, is why we still see local authorities with many DOLS authorisations (sometimes over 100) and yet not a single referral under s39D MCA.



I also worry – in general, not just in relation to IMCAs – that the right to appeal against detention under the DoLS has somehow been interpreted as a right of families to be supported and enabled to appeal, not the detainee themselves. As I wrote on Twitter, a person who is detained under the DoLS isn’t the family dog, their rights of appeal do not belong to their family, and where they object they should be supported to exercise that right regardless of what their family think. Which is not to say that families are not also entitled to be supported in appealing under the DoLS, but just to say there are separate and equal rights to challenge under this framework.

Anyway, I think there are much broader issues here about the role of ‘non-instructed advocacy’ – which was originally developed for people who were unable to communicate their wishes and preferences – in a context where people often are able to communicate them but their advocates may adopt a ‘best interests’ approach. I really wish some people in the advocacy world would start critically engaging with this issue. I also think there is an important issue about when a case should go to court under the MCA, which the guidance available to IMCAs and public authorities does little to clarify, so I will leave it for now and devote a longer blog post to it when I have time…

I should clarify, I am not trying to knock IMCAs as individuals – advocacy is a very important job, and there is evidence that many IMCAs do really vital work – especially around end of life decisions and conveying a person's wishes and feelings to others. There are many IMCAs whose work I really admire, and who I would want at my side if I was subject to a best interests decision making process.  I do, however, have several misgivings about the way their role is constructed by the statute itself, the commissioning structures and the quality of the guidance available to them.

There is a lot to take in from this session, and I am afraid I have just focussed on these issues because they are of particular interest to me.  There was also discussion of training, commissioning (although no discussion of the issues around IMCAs being commissioned by one of the very bodies they are supposed to hold in check), and the possibility of national standards and accreditation which I have left out. Here is a selection of the edited highlights...

The referral mechanism

Q117. Elyzabeth Hawkes: I think that the Mental Capacity Act usually refer to “should” not “must”, and “may” not “will”. It leaves it open to discretion whether that referral will be made, and I think that could be stronger… My personal view is that it would support people to access an IMCA if the Act was more direct about a professional’s duty to consider and to make a referral.

On the regional variation in referral rates

Q120. Steve Gray: I think what Jonathan alluded to there was that there is a massive area in which people need support outside IMCA. Bearing in mind that we are talking about advocacy services, there are wider issues here, part of which are commissioning general, generic services. A lot of people do not fit the IMCA remit, so I think it is about making commissioners aware of that, and the importance of that in ensuring that people have their voice heard within what are some very challenging times.

Extending the IMCA role

Q117. Jonathan Senker: One of the proposals that I know Members of this Committee supported to amend the Care Bill would see an increasing role for advocacy in assessment, care planning and review as well as in safeguarding. I think those are essential ways of enabling people to have a voice, rather than waiting for other people to take decisions and for that decision to be known before that person gets that support. So, for example, the IMCA role will not be triggered at the moment by somebody who is living a generally unhappy life in, for example, a care home, unless somebody picks up on that and says, “Actually, there’s a decision to be made here about whether this person should continue to be living here”. I do not think that is good enough, and one way of addressing that is by making sure that there is the involvement of advocacy, assessment, care planning and review for people who need it most—broadly people whose capacity for decisions that may arise through that may be comprised.

On representing ‘best interests’, or a person’s wishes? Non instructed advocacy

Q112.   Lord Faulks: Good morning. I declare an interest as an advocate but an ordinary advocate, as it were, unlike an IMCA. I have to represent people even if I do not agree with their course of action, if they require me to do that. You have a rather different role sometimes. On occasions, you will be supporting the client to make the decision and respecting their wishes. On other occasions, you will be representing their best interests but not necessarily following their wishes. Now this is an acutely difficult choice, I suspect, sometimes for you to make and to reflect your role. Do you think there is anything in the Act—of course, we are scrutinising the Act—which could be improved so as to make that distinction clearer and more helpful for you?
Jonathan Senker: It is a really important question. It goes to the heart of how IMCAs work. We have found that the interpretation of the Act is broadly consistent—that our focus is on the person’s views and wishes. We are also providing an additional protection for that person by making sure that the decisions are taken in line with the Mental Capacity Act.
That does take good judgment. It does take careful supervision. I think it is interesting how the Mental Capacity Act and the IMCA service works in practice. I shall give you an example of two women in neighbouring hospital beds. Both of them have advanced dementia. Both of them are very clear that they want to return to their own home. For one of them, quite unusually unfortunately, everything possible has been done to support her in her own home previously. People have gone to heroic measures to enable that to happen, and it has led to some very poor results for her, and there is nothing that people can think of that might change that. The woman in the neighbouring bed has not had that support and is more typical of many of the people that we work with, where there is almost a default choice that if somebody has quite advanced dementia and is finding life rather difficult—if there are key risks—they will move into care or nursing homes.
In both cases, our responsibility has to be to make sure that that person’s views—that that person’s wishes—are heard loudly and clearly, and everything possible is done to take account of those. In the case of the woman where very little has been done to help her to live in her own home—to adapt it and to provide additional support—we are much more likely to challenge a decision that she needs to move into care than we are with the woman where every effort has been made. That speaks correctly to the code of practice, which makes clear that the responsibility of the IMCA, while it is to make sure that the person has a voice through the process, is to challenge when the decision is not in the person’s best interests. As I say, that takes judgment, takes care, and takes proper training and supervision to do.
So my sense is that the Act is sufficiently clear, and the interpretation of the code of practice is sufficiently clear, but it does mean that organisations need to ensure that people are properly trained and supervised. By and large, I believe that that is what is happening.

Q112. Elyzabeth Hawkes: It is very difficult. It is a conflict. Take a safeguarding example. You are supporting two different clients. One client wants to make a decision that they still wished to live with this person even though they have spent all their money. Potentially, if you looked at their overall life, if you removed them from that person they would have nobody, they would have no social inclusion and their life as such would be a complete wreck. Just because somebody wants to make an unwise decision does not mean it is a bad one. Take another example where somebody chose to live somewhere where they were continually abused, at risk to life. I think you would have to represent what was best for that person in relation to safeguarding. But I think that is really difficult. The advocates need the support and supervision to be able to take them through that process, because that is quite a call to make.

Q112. Jonathan Senker: I think there is also a contextual point that it is easier to advance somebody’s wishes knowing that they may be harmful if we have confidence that there is actually somebody out there who is concerned about the harm. The decision-maker is taking their responsibility very seriously, so they can weigh up the fact that somebody may object to something with the harmful impact of that. It is a little bit more difficult to be a strong advocate for something that will be harmful to an individual if there is not that correct pushback and responsibility taken by the decision-maker to weigh up the person’s wishes and views with the other elements of the best-interests checklist.

Q112. Steve Gray: I think what is central here, of course, is what I think Jonathan and Elyzabeth alluded to earlier: in all instances when somebody lacks capacity, it is about making sure that view is heard, and it is about making sure that that is central to the decision-making process. As I see the concept of best interests, we are basically working together, because in one way you will be asking for the person’s views—what they actually want to happen, what their view is of the situation. In the report, that will be clearly stated: “This is what the person wants”. But you also have the freedom to ask questions. At the same time as “This is clearly what the person wants”, using non-instructed advocacy tools, for example, you can ask questions of decision-makers around the areas about the decision that you are making. I agree about also challenging when appropriate. The two things—the person’s view, and the best-interests decisions and questions around them—can be raised by using non-instructed advocacy techniques.

Fluctuating capacity

Q106. Jonathan Senker: the other element is about the overall approach that we take and the number of visits that we make. Particularly if we are working with people whose capacity may fluctuate, it may be important to see them in different ways at different times, and use the advice that we may receive on how the person communicates from people who do know them well, albeit they may not be able to independently support people. To some degree, the work of an IMCA can be a little bit like a detective, reaching back to say, “What are this person’s past decisions? What are their past views?”, profiling that person’s life to help that come alive for decision-makers. The extent to which we can do that is quite bound by the resources within the service.

Resources

Q107. Jonathan Senker: We need to make a balance and manage the resources that we do have. Overall, there is always more that we could be doing to enable the person’s views to really come alive so, yes, we do feel that there is quite a limit on our resources and the time available. That is why we are focusing on just the referrals that we have. 

IMCAs and the deprivation of liberty safeguards

Q118. Elyzabeth Hawkes: [IMCA under the DOLS] is a separate set of skills. It is a different timeframe. There are statutory requirements. I think it should be—and it is—a specific set of training. It should not just be added into IMCA—“Oh, it’s just DOLS added on the end”—because of all the issue types other than serious medical treatment, DOLS referrals are the ones with the greatest national fluctuations you will see, particularly around 39Ds, when there is an advocate to support somebody that is being a paid person’s representative. It should be an individual service. There is a definite set of skills, particularly with timeframes. For 39As, you only have those five days. You have to do a concise report that is in time, as the person is not going to have their view represented. So it is different, and a different set of skills, and it should be an experienced IMCA who has had the additional DOLS training who provides that service.

Q118. Jonathan Senker: Obviously the structures are different. We find the role [of IMCA under the DoLS] to be broadly similar in advancing the person’s interests, ensuring that those are taken account of, challenging decisions, and particularly challenging or requesting a review of the deprivations where necessary. I think there is a difference with Section 39D, where our role is to support an unpaid representative. There we have examples of very good practice where we have been able to empower and support relatives and friends to really safeguard the individual and to make sure that decisions are reviewed. We also have frequent examples where the relative or friend does not have the information support to understand how important the role is. While we attempt to provide that, often they are grateful for the provision of care that is available; they do not want to rock the boat and they do not want further involvement. An important proposal might be that everyone who is subjected to a deprivation of liberty safeguard does have that paid representative who could work effectively alongside family members and friends where necessary, and the level of involvement that may be needed could vary considerably according to the ability of friends and family to carry forward the role. Given that we are talking about depriving people of their liberty—it is such an important move—we need to make sure that there is every safeguard available to people. There is a key gap there.

Q118. Steve Gray: In regard to DOLS, one issue for advocates working with DOLS is the time constraints sometimes that actually happen around DOLS. Obviously, we work on a seven- day week here, not a working week. Sometimes the amount of time you have to work with the person is cut down immensely. That can really affect the amount of work input into that decision-making process. Quickly, probably the review process around DOLS could be strengthened in some way to encourage an independent element to the reassessments, very often. If you look at the Mental Health Act and the way the tribunal system works, there is an element of independence in that system. It would be very useful in some way—I do not how it would work—to provide additional safeguards in that situation.

Is there still a ‘Bournewood gap’?

Q119. Jonathan Senker: I do not think we have done. I do not know whether the decision-making around L, the man at the heart of Bournewood, would be different now than it was when he was detained… The extent of the protections they provide is high in areas that engage with it. We know of certain areas where they really discuss these issues. They have provider forums and social work forums that look at the issues and thrash them out in advance. They do well. Areas that do not, do not.