- Vanda Ridley, Communications Manager at the Down’s Syndrome Association;
- Beverley Dawkins OBE, National Officer for Profound and Multiple Learning Disabilities at Mencap;
- Hannah Barnett, Head of Operations at the National Autistic Society;
- George McNamara, Head of Policy and Public Affairs at the Alzheimer’s Society;
- Peter McCabe, Chief Executive of Headway;
- Paul Farmer, Chief Executive Officer of Mind.
General comments on the Mental Capacity Act and its implementation
Q74. Vanda Ridley: We think that the Mental Capacity Act has a very common-sense approach if implemented correctly.
Q74. Beverley Dawkins: …we would also agree that it was a very positive and welcome piece of legislation. I think before the Act people with a learning disability were pretty routinely excluded from many decisions that affected their lives, and decisions were plainly not always made in their best interests. We think that the Mental Capacity Act introduced a very good framework for people to have much more confidence in supporting decision-making for people with a learning disability, both with and without capacity. Again, we would echo the same concerns that implementation is probably where our biggest concern is, and probably in some specific areas such as in the definition of serious medical treatments, as set out by the confidential inquiry witnesses, where maybe some clarity is required.
Q74. Hannah Barnett: We were a key member of the Making Decisions Alliance decision-making body when the legislation came about, and we wanted to ensure that people had a voice; that people who struggled with communication were able to communicate their decisions better. We found in many cases that this has been the case, but again, I agree with the other two that often implementation has been quite difficult, and it does appear to be reliant on different local authorities and different people in the equation to ensure that some of the stuff is implemented appropriately.
Q90. George McNamara: Our view is that the Mental Capacity Act has not lived up to its expectations. In theory we think it is absolutely right in terms of producing a framework, but in practice we are not convinced this has worked most effectively to benefit people with dementia and particularly their carers as well.
Q90. Peter McCabe: I think our view is that the Act has generally been well received but, as with all things, you can make it better.
Q90. Paul Farmer: I think, like other panellists, we would agree that the Mental Capacity Act was a good piece of legislation. It promoted an enabling and participatory approach, and it created the prospect for a much more level playing field, if you like, in terms of the rights that individuals had in these often very difficult situations. So, the principles that were clear and very straightforward, including this presumption of mental capacity, I think were real positives. Like others, I think we would also agree though, that there have been real challenges in the implementation.
On the assessment of capacity
Q74. Vanda Ridley: One of our concerns, I think, is around the ability of local authorities, for example, to assess correctly the capacity of people with Down’s syndrome, in that it is both time- and resource-dependent. Certainly at the moment there are limitations, because of shrinking adult care budgets, for that to be able to be done adequately.
Q84. Vanessa Ridley: We have a number of cases, and I have gone through our records, where families are told that there is going to be a best-interests meeting when there does not seem to have been any assessment of capacity. There is a tendency to jump to safeguarding.
Q103. Paul Farmer: There is some very good practice happening without doubt but we certainly do hear evidence of the phrase “cursory assessment”. It feels quite light-touch. It does not feel very in-depth, because, to do it well, as others have mentioned, it is quite a skill. Sometimes it is not done to the best possible effect, and it can be quite time consuming. We are seeing examples of it being done well but recognising that the time is required. Then we have these cursory assessments that are not really terribly satisfactory for anyone.
Q103. Peter McCabe: We find it very patchy, but here is a direct quote from somebody who experienced it for her husband: “It was actually done very well. It was not invasive and it is more commonsense questions. Everything was discussed properly to make my hubby understand it properly”. We do hear comments from the other extreme, but I think it is right to give a balanced view to the Committee and give you that direct quote.
Q103. The Chairman: We heard from the previous panel of charities that there is perhaps all too frequently an attempt to decide best interest before any attempt to carry out an assessment, whereas, in fact, the best practice should be to carry out the assessment of capacity and then to deal with the best interest. A nod of the head will do; would you concur that that is what is happening in your sectors? Yes, everybody is nodding. Thank you very much indeed.
On appearing to have capacity…
Q84. Vanda Ridley: …young people with Down’s syndrome often have quite good language skills and so they come across as being more able than they actually are because they have learnt lots of different social cues to use. We have cases of young people who have been allowed, for example, to take out contracts and get themselves into debt because they have discussed the fact that they are able to make that decision. Parents have intervened and said, “This is not realistic, you are not understanding the abilities of this young person”, and have had to take out lasting power of attorney to be able to get control over that.
Q84. Beverley Dawkins: …I think the people who may trouble us most would be people who have borderline capacity or perhaps even fluctuating capacity. We have come across a number of situations where the actual assumption has been that the person has capacity. They are able to make a number of decisions about large parts of their life but when it comes to perhaps a medical decision, if assessed fully, it would be shown that they perhaps could not weigh up the consequences of their decision, so they may find themselves having consented to perhaps a medical procedure without understanding the consequences.
Q101. Peter McCabe: With our service users there are all sorts of complexities; and one is that capacity can change over a period of time, and that presents some challenges. Then issues like lack of awareness and insight, impulsivity and inflexibility can create problems for people who are trying to make those assessments. One of the issues with survivors of a brain injury can be that they can be very good in terms of their presentation and giving you the answer that they think you want to hear, whereas the carers and their families would have a very different story. That is a difficulty we have to acknowledge and recognise.
Q102. George McNamara: One of the key things we look at, for example, when looking at staff training and awareness that we have talked about is around recognising different methods of communication for people with dementia. One of the examples we have picked up on was staff in a care home had just given residents a cup of tea with no other options as part of their day. When asked why this was the case, the staff said that the residents would not be able to answer anyway and that is why they just got a cup of tea. It was suggested to the staff that they should show residents tea and coffee and ask them to point out their choice, so little changes and a little bit of understanding about how different ways of communicating can go quite a long way to improving the quality of life and also engagement with people.
On making unwise decisions
Q80. Hannah Barnett: Basically one of the issues that we experience with our client group is that people struggle with the consequence of events. It is the very here and now: do you want apple juice or orange juice? You can make a decision. But when it comes to the impact of the decision to have either of those, they cannot process it and see it through. So this is where we struggle… It is crucial that professionals have training in autism and the understanding that you have to go back and check that decision but also give different situations and alternatives as opposed to, “Do you want to live here or here”, which might still not be enough information.
Q102. Peter McCabe: I think from our perspective it is difficult to strike the balance between protecting people and giving them autonomy. We heard from somebody that was involved with somebody again who received a substantial claim for personal-injury damages, and with that comes all kinds of dangers. There is the sense in which an individual might be capable of making a decision to purchase an item at a particular point without necessarily appreciating that if it is in a sequence of decisions it could have consequences down the line in terms of managing their resources. They are capable of making the choice between this wide-screen TV or that one, but do they fully appreciate that if they continue to purchase these items there might come a point where it has an impact on their ability to do the things they want going forward? That is a real issue, I think.
Lord Swinfen: Are you happy to allow them to make their mistakes?
Peter McCabe: I think there has to be that provision, but there also is a responsibility for somebody who is looking after their finances, where they do not have the capacity, to listen to their views but make sure that they do not put themselves in the position where they are without resources or, worse still, can be exploited by sharks that swim around such folk.
Q86. Vanda Ridley: …there seems little common sense. For example, again, for people with Down’s syndrome, and this is across the board in a way, they have difficulties with diet and weight and making healthy eating choices. As a result, we have a number of cases, again when people go into supported living when they are allowed to make a decision about eating six pies for their lunch or eating in a very unhealthy way. I am sure it would be the same for both Beverley and Hannah. Instead of looking at it in a normal practical way, which is creating an environment whereby healthy choices can be made with regard to diet, there is an element of teaching in there, of creating the right environment. It is just, “Well, that is their choice”. It is very simplistic, so they are allowed to make their own choices and their health and welfare suffer as a result. Then families feel the need to intervene and to take action.
On the exclusion of people and their families from decisions
Q75. Vanda Ridley: …we have a number of cases that have come to us where decisions have been made without any recourse to the individual that it involves. We have a local authority who we have challenged on two occasions where they have not involved the person or their family in a decision about a change of residence, and this is despite the knowledge, as far as we are aware, that they knew that there was capacity.
Q86. Beverley Dawkins: In our experience, sometimes confidentiality has been used as a barrier to families becoming involved. So perhaps somebody is living in a residential care setting of some sort and the family are highly involved in supporting their son or daughter as much as they can; when they have wanted to question, or challenge, or just find out information about the way their son or daughter’s finances are being used, they are sometimes told, “Sorry, that is confidential”. We have advised, in a couple of circumstances, that the support and involvement of the family member was very likely to be in that person’s best interest, although you can understand some of the circumstances where maybe a small number of families may be excluded from some of that. But if you follow the steps in the Act and the code and properly consider those issues, you perhaps would come to the conclusion that it was in the best interests of that person for the family to be very involved and to be party to that information. I think some families feel that confidentiality is used as a way of shutting them out.
Q104 Lord Turnberg: Do you think that practitioners keep them out because of a fear that they might be betraying confidences, the fear of getting past some confidentiality with the patient? Do you think they are inhibited in that?
George McNamara: The answer to that is yes, but we do not see that confidentiality should be seen as an excuse for not including family to ensure that the best-interests decisions are made. That is absolutely crucial. It should not be seen as something to hide behind at all.
Q104. Paul Farmer: In our experience confidentiality is sometimes used as an excuse for not involving family members, yet we would certainly argue that good-quality clinical practice and good-quality care needs to involve the family because of their understanding of that individual, particularly that individual’s home life and the circumstances of their home life. Obviously as an organisation that has always stood up for the rights of service users, including sometimes their rights not to involve their families because their families are the problem, nonetheless, most people, including most service users, will acknowledge that that additional insight and information is helpful in getting the solution right. It concerns us, for instance, as we heard last week, that the Caldicott recommendations around access to information seem to be putting up yet another potential barrier for this. There are surely enough examples now to show that sharing of information among relevant and interested parties in an appropriate, sensible and professional way is the way to achieve not just good-|quality care but also safe care.
Q104. Peter McCabe: Confidentiality can be an issue or it can be an excuse. We also hear that the established practice, the culture of an organisation and the structures that they have, which are rigid, can often be more of a difficulty and cause more problems for families than the confidentiality issue.
Q81. Beverley Dawkins: I think families find themselves, in a variety of ways, very much on the back foot here, even when things like best-interests meetings are called and they are invited. They tell us that, “Well, everybody else had the papers days before, we did not have the papers. We got to the meeting, and it almost felt like the decision had been made”.
Q82. Beverley Dawkins: It is hard to comment but my instinct, if you like, about that is that I am sure there are many families who probably have no understanding that the Mental Capacity Act exists, never mind thinking of contacting one of our organisations to ask for advice.
On the understanding of the Mental Capacity Act by medical professionals
Q79: Beverley Dawkins: Based on our “Death by Indifference” campaign, working to health inequalities, obviously our perspective is very much that medical professionals are the people that we feel ourselves, I guess, most challenged by in some of the cases that we handle at Mencap.
Q79. Hannah Barnett: Perhaps I can add to that a very similar response, especially around the healthcare professionals who seem to be unwilling to carry out routine checks as people are getting older—for instance, mammograms, smear tests, those kinds of things that, at a certain age, they are going to need. They seem unwilling to do the tests or to seek a decision-making mental capacity assessment on someone to see where that sits and how we can go about achieving that, as opposed to just knocking us back at the GP door, so to speak. We do struggle with that across the UK; it is not location-specific.
85. Beverley Dawkins: I think psychiatrists would be better placed to understand these issues and may indeed take a role in helping those other doctors to understand the issues here. Our concern is probably equally spread between GP and acute hospital doctors.
Q83 Hannah Barnett: I think in our experience where we have used an IMCA they have been invaluable and absolutely fantastic. In the case I was speaking about, we had to pay for an IMCA, which does not feel right but we did, because when you need an IMCA it is like a crisis point and what we find is a lot of these situations are at crisis… in this particular case—but in a number of other cases that we have—where people are placed out of borough, the local authority do not want to give us an IMCA for that person and they say, “Go back to the local authority who is funding the placement”, who obviously do not want to send someone across the country to give us that support either.
Q83. Beverley Dawkins: …I think it is not identifying that it is a serious medical condition that should trigger the involvement of an IMCA. So, not enough people getting that referral would be our view. To echo what has just been said, the disparity across the country about access to IMCAs is certainly a concern.
Q100. Peter McCabe: I do not think there are enough. That is what I am hearing from our regional set-up around the country.
Q100. George McNamara: …the figures we had from the Department of Health found that 38% of referrals to advocates were for people with dementia, so that is quite a big proportion of people. Looking at the current customer base, it would not be that difficult to make sure that there is a specific dementia element that could cover a significant proportion of need.
Q100. Paul Farmer: We know that there are some fabulous advocates out there who do a really terrific job for their clients, but we also know that there are potentially less fabulous advocates. There is no central body to really look at this in any sufficient depth.
Q90. Peter McCabe: The specific suggestions that we would have there would be… to create brain injury-specific independent mental capacity advocates with a real understanding of brain injury—that is a very specific condition…
Q87. Beverley Dawkins: I think that the deprivation of liberty safeguards are quite hard to understand, so there is poor understanding… When you take the time to understand them and see that they are very much designed as a safeguard, you can see that they have great value—indeed, they were partly generated because of the Bournewood case and all of that, which was obviously extremely concerning. But they also get misused, and so again, families’ perception can be that they are a way of restricting sometimes their access.
Q87. Hannah Barnett: It has been a really good bit of legislation for us to check our own practice out and to look at some of the stuff we are doing. But equally, the onus is very much on the provider, I feel, and that has not been implemented by the interested parties.
Q94. Paul Farmer: I think quite often the word “safeguards” is left to one side… we know that when the safeguards work well they encourage the staff and the service providers to think about the restrictions that are being placed on that individual. So, they are placed on that individual in a minimum way, and I think that is a positive way to encourage staff to think about the application of this. So, rather than think about this as being one of the times when you deprive someone of their liberty, you think about what are the safeguards that you should be putting in place.
Q87. Beverley Dawkins: Just to start with those words, “deprivation of liberty”, seems to set them off on the wrong foot.
Q92. George McNamara: …the key thing we would look at is deprivation of liberty safeguards and having a clear definition of what that means.
Q93. Paul Falmer: What we hear is that it is the frontline staff who find that current definition quite unclear. I think it would be helpful to see an objective test that relates to the arrangements for the person’s care rather than how they present. We have certainly heard of instances where a person has stopped objecting to arrangements for their care, so the DoLS authorisations have been lifted but the arrangements for their care have not changed. So, the DoLS test needs to be applied quite objectively, I think, on that.
Q94. Paul Farmer: I think sometimes staff think that because they are providing care and acting in the person’s best interest, they must not therefore be depriving the person of their liberty… Certainly, work that was done for the Mental Health Alliance by Roger Hargreaves [and here] found that this kind of reaction was something that they have found among staff. For those safeguards to be effective, the deprivation of liberty aspect needs to be clear.
Q95 The Chairman: Do you feel the Bournewood gap has been plugged adequately?
Paul Farmer: No, I think the message that is coming clearly from many places is that the gap is not sufficiently working. Conceptually, legislatively it looks like it has been plugged but in terms of practice it does not look as though that has really worked.
Q90. Paul Farmer: If you allow me just to make a very brief comment on this, in the longer distant future, we would encourage a quite careful reassessment of the interface between mental capacity and mental health legislation… Our position, in a sense, would be unchanged, that there would be a great virtue in looking at a capacity-based mental health legislation…
Q81. Beverley Dawkins: We would say no, generally families are often not aware of their rights and, as they become increasingly concerned about decisions that are being made, find it difficult to know how to challenge decisions. We have had quite a number of examples indeed where we have had to intervene in situations like that. There are many families who think that the only way that they can assist in the decision-making of an adult with a learning disability is by becoming a welfare deputy. We would suggest that if the Act was being properly followed, that would not be particularly necessary.
Q99 Lord Swinfen: Are families, carers and individuals who may lack capacity aware of and able to access their rights under the Act, including through the role of independent mental capacity advocates and the Court of Protection?
Q99. Paul Farmer: Not sufficiently, in our view.
Q99. George McNamara: The increasing numbers of enquiries to our helpline—just on the Court of Protection aspect, there are two things that we are picking up. One is that it is quite expensive; £400 then plus any additional legal fees as well. Also, it is quite slow in terms of the decisions to do that. One of the examples that we have had in terms of accessing information and guidance was when somebody responded to us by saying that they received the deputyship certificate last week but do not understand what they are meant to do next. Is the COP going to send any guidance regarding how to use the certificate to sort out Dad’s finances? That is just one example really where people are looking for further questions beyond what has been provided.
Q90. Peter McCabe: The specific suggestions that we would have there would be… to simplify the process for appointing deputies; and to require more regular supervision. We have a real concern about how that is going, and we think there is a need for further training and clarification for medical professionals because, although generally we feel it has been well received, there is a significant difference between best practice and what we hear about from service users, which is worst practice.
Q102. Paul Farmer: Briefly, just to add this, certainly our legal advice staff hear from relatives and carers of people who are not being involved in decisions that they could make, when they go for meals, whether they can smoke or go outside. Just as an aside to the question of financial capacity and capability, there is some interesting work going on with financial institutions to look to see how they could use their anti-fraud systems to detect particular patterns of spending. This could particularly, for example, affect somebody with bipolar disorder, who could go and spend quite considerably when they are in a very high state. There is certainly a growing level of interest amongst financial institutions to look at this. That is quite a good example of where the environment can be created to enable people to make their own decisions but also safeguards can be put in place where their mistakes may become quite damaging in terms of the longer term impact of that. The culture change that is required to get that balance right, which is difficult, can be achieved by some imagination and some creativity.
Q95. Lord Patel of Bradford: Just to pick up from what George said about seeking advice on the code of practice, when the Mental Health Act Commission existed, besides all the commissioners that went round to hospitals, we had this staff team who were administrators who used to answer the phone all the time. If any nurse had a problem or issue about the code of practice, they would pick up the phone and talk to the administrative team, who spent all their day looking at issues about the Mental Health Act code of practice, and they would have an answer. If something like that was available, do you think you it would plug the gap in terms of understanding or simplifying this code of practice issue?
George McNamara: I think it would go some way. From our own Alzheimer’s Society helpline in the last year, just on the Mental Capacity Act, we had over 2,500 enquiries just from people concerned with dementia.