Organ Donation (Deemed Consent) Bill

Lord Hunt of Kings Heath Excerpts

2nd reading (Hansard): House of Lords
Friday 23rd November 2018 Lords Chamber

Moved by

[Lord Hunt of Kings Heath]

That the Bill be now read a second time.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I should first like to declare an interest regarding my forthcoming appointment to be a member of the General Medical Council.

[Noble Lords]

Oh!

[Lord Hunt of Kings Heath]

It is a good start, my Lords—just have to keep going.

Every year, NHS Blood and Transplant holds a number of very moving ceremonies with donor families. These occasions are wonderful celebrations of the gift of a loved one’s organ, to give life to others. Last year in England, there were over 1,300 deceased organ donors and over 3,300 transplants. That is a wonderful achievement but we could do so much more. My Bill aims to increase the number of organ donations while maintaining strong family involvement in the decision which, I stress, will remain a remarkably altruistic act of giving. Nothing in this Bill will change the concept of giving.

It is thanks to the tireless work of a number of people to promote the Bill, especially my honourable friends Geoffrey Robinson and Dan Jarvis, who secured unprecedented cross-party support, that we are today a step closer to putting it on to the statute book. I extend my thanks to the Prime Minister and my right honourable friend the leader of the Opposition, and to other leaders of the political parties in Westminster, for their continuous support for the Bill, and to the Daily Mirror, for its unflagging and enthusiastic support. I also pay tribute to the noble Baroness, Lady Randerson, who took forward subsequent legislation in Wales to allow organs and tissues under deemed consent to be used in transplants in the rest of the UK countries. I am hoping that she may inform the House of the latest progress in Wales regarding the legislative changes that occurred there.

The Bill is often referred to as Max’s and Keira’s Bill, in honour of a recipient, 10 year-old Max Johnson, who recently received a “Pride of Britain” award from the Prime Minister for his immense bravery while waiting for a heart transplant, and the donor, Keira Ball, who tragically died in a road accident. I pay tribute to both of them.

There is currently a record 20 million people in England recorded on the organ donor register, but 400 people died last year while waiting for transplants, and a further 755 people were removed from the transplant list as they were just too ill to receive treatment and a transplant. This is partly down to the fact that only 1% of people die in circumstances where their organs are suitable for donation. It is also partly because members of the family are often not aware of their loved one’s wishes, and sometimes find it safer to say no. Our ambition is to achieve an 80% consent rate in England. This will not happen overnight; the experience in Wales is clear in that respect. However, if we reach that target and 80% of families allow donation to go ahead, there will be 280 donors a year, which could lead to as many as 700 more transplants a year. The Bill, if enacted, will be a significant step forward. Starting from the basis of presumed consent, the family would still be fully involved in the decision. The aim essentially is to spark in England the positive culture change that many nations in Europe have experienced, following their change to an opt-out position. It will mean more people being inspired to have that incredibly important conversation with their loved ones, knowing that the life of a person waiting for a transplant could be saved.

In countries where deemed consent systems are in place, there are generally higher numbers of organ donations when supplemented with wider measures. I will return to that later. It is particularly pleasing to note that Wales has now reached a consent rate of 70%, and the first few months of 2018 showed that rising to 73%.

I would like to give a summary of the Bill, which consists of three clauses. First, however, I would like to clarify a few things about its scope. The proposed consent system only covers deceased donations—it does not apply to living donations or donations for research purposes. The Bill would make changes to the Human Tissue Act 2004, which covers England, Wales and Northern Ireland, but it would make the changes to consent in England only. The system of deemed consent in England will be consistent with the Welsh opt-out system. Transplants which currently take place under the current system—heart, lung, kidney, liver, pancreas, bowel and tissues such as corneas, skin, bones and tendons—will fall under the deemed consent provisions. Excluded from those provisions will be the less common organs and tissues, often called novel transplants. These will still require express consent.

Following consultation, regulations will be set out by the Secretary of State in an affirmative statutory instrument, which will specify which organs or tissues will be excluded from deemed consent. A Written Ministerial Statement will be part of the process every time the regulations are amended. It is important we have an approach consistent with Wales and Scotland on these issues to make sure that nurses and clinicians working across borders follow the same approach.

There are other important safeguards in the Bill. First, all children below 18 will be excluded from deemed consent, although they will still be able to register as now to donate their organs. People who are not ordinarily resident in England for at least 12 months immediately before their death will be exempt from the new arrangements. In practice, this means that people living in England in the short term will not be affected by changes in the consent system. The Bill also provides a safeguard for people who lack the capacity to understand the concept of deemed consent for a significant period before their death. The decision on whether a person lacks capacity will continue to be established in accordance with the Mental Capacity Act 2005.

Very importantly, the Bill sets out the role of the deceased family and friends under the proposed arrangements. It makes it clear that they may provide information suggesting the deceased would not have consented, to prevent donation proceeding. This is very important. I reassure noble Lords that the family of the deceased will continue to be involved in discussions with specialist nurses about their loved one’s wishes and how best to support those wishes, also taking account of faith and cultural considerations. Clinicians will never proceed if the family object strongly. I know the Government have worked hard with different faiths to ensure that they are comfortable with how deemed consent will work. As Kidney Care UK put it, changes in the law on consent do not change the importance of people talking to their families about their wishes in respect of organ donation.

To support the smooth implementation of the provisions in the Bill, it places a duty on the Human Tissue Authority, the regulator, to update its code of practice and issue practical guidance for professionals. The new codes will be consolidated in a single code, to be consulted on and laid in Parliament. The Bill will also allow all organs removed in England for transplantation purposes to continue to be used across the UK, to save as many people in need as possible.

Clause 3 sets out that the Bill extends to England, Wales and Northern Ireland as it will be amending the Human Tissue Act 2004, which extends to those countries. It sets out that Clauses 1 and 2 will come into force on the day or days that the Secretary of State appoints in regulations made by statutory instrument, so in effect the Secretary of State will have to set out what the commencement date is for deemed consent in England. Clause 3 automatically comes into force on the day that the Act is passed.

I recognise that a change to the consent system is not a panacea. The Bill needs to be accompanied by an assurance that capacity in the NHS in terms of transplant teams, intensive beds and specialist nurses will be sufficient. I particularly mention the need for good-quality training and greater numbers of specialist nurses. They are remarkable people who have the extremely difficult role of initiating discussions about potential organ donations with families at such a sensitive time. The Spanish experience is that investment in specialist nurses is one of the major factors in their success and the transformation that has occurred in Spain.

It will be essential to have a strong communications strategy to ensure that the public are fully aware of the changes, and I look forward to the Minister’s response on that. I would also say—and I think this is the Welsh experience—that it is important to have follow-up campaigns because clearly, the cultural change we want to see will not happen overnight.

I end by saying that I am clear that the gift of giving will be as strong a part of organ donation as ever. I thought the Minister in the other place, Jackie Doyle-Price, put it well when the Bill went through its Commons stages:

“The most important thing any of us can do if we want to increase organ donation is ensure that we all have those conversations with our families, so that they understand our wishes … One of the great virtues of the Bill and the surrounding campaigns is that we have encouraged people to have those conversations. It has been a real driver of cultural change in that sense”.—[Official Report, Commons, Organ Donation (Deemed Consent) Bill Committee, 12/09/18; cols. 11-12.]


I think that puts it very well. I am confident that, if enacted, the Bill will play a significant role in changing the culture towards organ donation in England and help hundreds of lives in the years to come. I beg to move.

--- Later in debate ---

[Lord Hunt of Kings Heath]

My Lords, I thank the Minister for that very authoritative response and to echo what he said about the time pressure that we face. I also thank all noble Lords who have taken part in what the noble Lord, Lord Carlile, was surely right to describe as a very moving but also ethically and intellectually based debate. Where else indeed could we do it? I am also grateful to the noble Lord for his advice on the GMC. I realise I am not going to be short of advice, but I am in that glorious honeymoon period where I am not actually responsible yet. On 1 January, I might hide round some corners if I see the noble Lord coming.

This has been a very moving debate. Essentially, it is a celebration of the gift of donations to help others. I thought that my noble friend Lord Elder put so aptly what this really means to so many people in our country. It is also interesting that the noble Lords, Lord Patel and Lord Lansley, said that they had changed their minds. I am in the same camp. I was responsible for organ donation between 1999 and 2003. I also had to deal with the aftermath of the Alder Hey debacle and I well remember some parents having to go through three or even four burial ceremonies as more organs and tissues of their children were found. I have therefore always taken a very cautious approach to this issue but, like the noble Lords, Lord Lansley and Lord Patel, I have become convinced that it is time to make a change. The evidence for presumed consent is stronger, I think, and I am very grateful to the noble Baroness, Lady Randerson, for what she had to say. Public opinion has changed, and the infrastructure has improved immeasurably. We should acknowledge that in relation to capacity, transplant teams and specialist nurses, there have been very significant improvements. I welcome what the Minister said about future developments, particularly the increase in the number of these key specialist nurses.

All noble Lords—the noble Lord, Lord Ribeiro, the noble Baronesses, Lady Finlay and Lady Chisholm, and my noble friend Lady Crawley—have emphasised that alongside the change, we need to have a public campaign. The noble Baroness, Lady Brady, said something which I thought was really important: no one should be surprised by the change. I think we should set that as our aim in the campaign. This is not a waste of money; this will have a big impact to the good on the public.

I echo what the noble Lords, Lord Patel and Lord Ribeiro, said about the shortage of donors from black and minority ethnic communities. I welcome the campaign this summer; we just need to build on it. I also welcome the discussions with faith leaders and the assurances given by Ministers. I echo and endorse those assurances and the contents of the letter that the Minister referred to.

The noble Lord, Lord McColl, and the right reverend Prelate the Bishop of Carlisle expressed some concerns that this Bill will have the opposite effect to its intended one. The noble Lord, Lord McColl, has grave doubts about the figures used for outcomes. Clearly, this is a significant step change; I acknowledge that. The right reverend Prelate thinks the balance between individual families and the state will be disturbed by it. It is a change, of course, but I believe that, with the safeguards, there is still balance in the provisions, and the change is being made in line with public opinion and the improvements in the infrastructure.

On organ trafficking, I agree with the noble Baroness, Lady Finlay, but I do not think this Bill is the right place to debate it. I pay tribute to the noble Baroness, Lady Deech, whose distinguished work in the area of human tissues is unequalled. I agree with her about the need to maintain trust. She referred to the Nuffield Council and its comments about how to make this work ethically; I agree with the points about easily accessible information, families being at the heart of decision-making and the network of specialist nurses. We heard a really reassuring view from the Minister about how that will be taken forward; clearly, we need to hold the Government to account on that.

As my noble friend Lord Elder said, this Bill is not a panacea. It will not, by itself, lead to a large increase in donations. However, it is a step change. It will help to raise awareness, encourage family conversations and change the culture, and that will lead to a higher consent rate in England. In that way, hundreds of lives will be saved. I am convinced this is the right way to go.

Bill read a second time and committed to a Committee of the Whole House.

Mental Capacity (Amendment) Bill [HL]

Lord Hunt of Kings Heath Excerpts

Report: 1st sitting: House of Lords
Wednesday 21st November 2018 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I welcome the replacement of “unsound mind”, but I ask the Minister to consider adding a safeguard to ensure that no one has their liberty denied because of a mental disorder without first being seen by a qualified doctor. It is essential that individuals are assessed for a mental disorder and not another condition presenting as a mental disorder, such as delirium or the side-effects of medication, which are common among older people. It is important that consideration is given to whether the disorder can be managed without depriving the person of their liberty. This requires assessment not only of their mental state but of their past and current physical health and medication. The assessment is a core part of this process. It has great significance because it relates to the deprivation of a person’s liberty. Who can carry this out should be stipulated in the Bill rather than in a code of practice. I ask the Minister to reconsider bringing forward an amendment to add this requirement to the Bill.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I support the noble Baroness on the assessments. The Minister’s amendment is very welcome, but clearly the assessment is crucial. My understanding is that in previous debates, as the noble Baroness suggested, he said that the code of practice will set out which competencies will be needed to carry out this assessment. Like the noble Baroness, I ask him to consider, perhaps between now and Third Reading, whether this might be better put in regulations than in the code of practice. I always worry a bit about the use of “competencies”. It is a word now used in many recruitment processes, but what exactly does it mean? Will it be done by a registered medical practitioner with sufficient expertise in this field? If not, what is the justification? The change the Government have made is enormously welcome, but it is very important that we are confident the assessment will be carried out appropriately.

[Lord Touhig]

My Lords, this group of amendments is most welcome. The term “unsound mind” is offensive in the extreme and historically has been used as a form of abuse to demean the dignity of the person to whom it is applied. These amendments mean that this old-fashioned term will no longer be in the Bill and that a phrase with no clinical meaning is rightly removed. Using the same term as the Mental Health Act, “mental disorder”—this link is explicitly made by the Government in Amendment 12—provides better diagnostic clarity.

Amendments 25 and 50 in the names of my noble friend Baroness Thornton and the noble Baroness, Lady Jolly, change “unsound mind” to,

“any disorder or disability of the mind”.

The Minister responded to those points in his opening speech. This is the language currently used under the DoLS in the Mental Health Act and it is to be welcomed.

Perhaps I may share with the House my personal experiences. My late mother suffered two nervous breakdowns in her life. One occurred before I was born, when she was put into an institution, where I do not think she was well treated. Later, she suffered a further breakdown when I was 16 and I had to take the lead, coping with and co-ordinating help and support for her, my father and our family. The consequences of her breakdown that I witnessed were traumatic not only for my mother, who was a loving, kind and thoughtful individual, but for our family, who witnessed times when she seemed to grow away from us.

My mother made a recovery and we all came through it, thanks to the devotion and understanding of our family doctor, our wider family and friends. However, our family experience has given me an understanding of some of the consequences of mental illness for individuals and their families. Families who experience what mine went through need support and understanding to cope, which is why I welcome the amendments.

I have said that the term “unsound mind” is used to cover many things. It is one that personally I find offensive, and I rejoice that those words are being removed from the Bill.

--- Later in debate ---

[Baroness Finlay of Llandaff]

My Lords, there is a tone of disappointment because I welcome all the government amendments, but the role of my amendment to government Amendment 52 was twofold. First, I am disappointed that speech and language therapists were not in that list read out by the Minister, because we had a debate about the importance of communication skills. When communication is impaired, particularly with disorders that affect any part of the speech or throat cycle, it is very difficult to assess someone’s capacity.

I included skills because I worry that experience and knowledge are sometimes just not enough. If the Government insist on “skills” going into the code of practice, I hope that the Minister will be able to confirm that the skills will be assessed and reviewed at appraisal, and that they demonstrate an understanding of the impact of fear—being frightened—on the way the person behaves.

The assessors must have a high level of communication skills and awareness of all the different ways that communication can be enhanced. I hope that they would also have an awareness of the impact of different types of medication on someone’s capacity, because sometimes changing the medication can really improve a person’s ability to make a decision for themselves.

Amendment 53 links to Amendment 74, which is in my name and will come up later. I am concerned that, without strong reassurance, some of these issues could slip by and we could inadvertently end up having superficial assessments of some people and not the thorough and in-depth ones they deserve. The whole principle of the Mental Capacity Act is to empower people to make their own decisions, and we are talking about trying to have the least restrictive option so that we can enhance a person’s liberty as much as possible. If that assessment is not meticulous with the appropriate skills, the wrong judgments could end up being made.

[Lord Hunt of Kings Heath]

My Lords, I realise that in the last group I mentioned general medical practitioners. I ought to inform the House of my forthcoming appointment to the General Medical Council.

We have had a lot to read in the last few days, and are clearly going to have to take a lot of this on trust, but the thrust of the amendments is welcome, and I am grateful to the Minister for tabling them. As he said, they strengthen the role of local authorities and give them a clear remit to intervene where they feel that, for one reason or another, the care home manager cannot discharge the responsibilities given in relation to the authorisation application appropriately.

In the letter that the Minister sent to a number of noble Lords, he set out factors that might be considered by the local authority as a responsible body. These would be:

“Whether the person has a care plan with the responsible body … local intelligence about a local provider of care homes”,


which would suggest that the responsible body takes over the process;

“insight from local commissioners or concerns about performance … sustained absence of a registered manager”—

or presumably when the turnover of managers is high, as it can be; and—

“an increase in concerns raised by residents, their carers or families … a new service or category of care provision, and/or … provision of poor or incomplete statements”.

To me that sounds very comprehensive and welcome.

What arises from this is that the responsible body will have to make a considerable judgment and, to make it, will need a very clear understanding of the care homes in its area. Could the Minister say a little about how he thinks that local authorities might be supported in that role? Clearly, they now have a major role which they have found it hard to discharge, for reasons that have been discussed. It is important they are able to do this in a consistent way.

The Minister mentioned the code of practice. It is a statutory code of practice, which I think means that it must be followed unless the local body has very good reason not to do so. It would be interesting to know what plans the department has for checking with the local authorities—not in a heavy-handed way—how well it is going after time and implementation, and seeing whether there is consistency across the country as a whole.

[Baroness Barker]

My Lords, I too welcome the Government’s change of mind. They started with a very different understanding from ours of the current roles of care home managers, local authorities, best-interests assessors and DoLS assessors. I think we still have a difference of opinion about how life works in practice, but these amendments show a considerable movement, if not complete agreement on that part, and therefore we welcome them. I feel it is right to remind the Minister that when the Select Committee of your Lordships’ House did the post-legislative scrutiny on the Mental Capacity Act and its workings five years after its implementation, there was an overwhelming lack of information and data both in local authorities and throughout the health service. I rather think that we have been perhaps unnecessarily preoccupied in this Bill with who carries out a particular function rather than looking at the way those functions could possibly be streamlined and better audited.

I do not think that the work of a local authority best-interests assessor or a DoLS lead, however they may be termed under the new scheme, is actually going to change that much, but I welcome the attempt here to meet us half way, and I thank the Minister for that. Well, perhaps it is more than half way in terms of our assessment that what was being asked of care home managers was beyond their capacity to deliver. Big questions still need to be asked about their role in the overall scheme. If we had not spent quite so much time on this, we might have been able to look more closely at greater efficiencies in terms of reporting and so on. For the moment, however, I welcome these amendments.

Vaping

Lord Hunt of Kings Heath Excerpts

Tuesday 13th November 2018 Lords Chamber

[Lord O'Shaughnessy]

The FDA has certainly said that it is facing an epidemic of childhood use, but the numbers are quite stark in their difference. In America, many more young people use e-cigarettes compared to in this country, where only 2% of 11 to 18 year-olds are using once a week. Generally, those are young people who smoke already—around 7% of 15 year-olds smoke. America did not restrict tank sizes until recently, but we did; it did not restrict bottle sizes, but we did; it did not ban advertising, but we did; and it does not have restrictions on nicotine, but we do. We have a very sensible system. I am not complacent about the need to make sure that young people do not use, which we are not seeing yet, and there are severe restrictions and punishments for any retailer who sells such products to children.

[Lord Hunt of Kings Heath (Lab)]

My Lords, is it not clear from the evidence that, while we have to be very careful about use by young people, this is the most successful tobacco prevention or stopping measure we have ever had? It is important that we keep a measure of balance in our approach to this.

[Lord O'Shaughnessy]

I completely agree with the noble Lord, and I think that we have the right balance: 57,000 people a year quit smoking through e-cigarette use and that is just about the most important thing you can do to improve your health.

Cannabis: Medicinal Uses

Lord Hunt of Kings Heath Excerpts

Thursday 1st November 2018 Lords Chamber

[Lord O’Shaughnessy]

We are, thankfully, now taking an evidence-based approach. The Chief Medical Officer said in her statement that there is evidence of therapeutic benefit from cannabis-based products, and that is why they have been rescheduled. However, we need to move cautiously. We know that the active ingredient, THC, is linked to psychotic illness and other things, so we need to make sure that, as we move ahead, its use is properly controlled and that the benefits always outweigh the risks for any patient who takes it.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I think that the noble Lord, Lord Farmer, referred to prescribed medicine addiction in his question. The Minister will be aware that this is a growing problem, with very little support locally for patients who have terrible outcomes. PHE is undertaking a review of the evidence at the moment. Can the Minister assure me that, when that review is published, the Government will publish an action plan to try to deal with what is a terrible issue for many people?

[Lord O’Shaughnessy]

I absolutely acknowledge the scale of the issue. I think that the point my noble friend was getting across was that we do not want to create the next opioid addiction crisis, and I completely concur with that position. Public Health England is conducting that review and I will write to the noble Lord with specific details of what we as a Government intend to say after it has concluded.

Mental Capacity (Amendment) Bill [HL]

Lord Hunt of Kings Heath Excerpts

Committee: 3rd sitting - (Hansard): House of Lords
Monday 22nd October 2018 Lords Chamber

[Baroness Jolly (LD)]

I would like to add a few more points on training. An awful lot of people in an awful lot of new roles will require training to get whatever system that we are going to end up with up and running at pace. Which organisation will be responsible for setting up the programmes for ensuring the delivery of good-quality training? Who has the responsibility to ensure that nothing is implemented until all the appropriate professionals have received their training? There is nothing worse than determining a date to fire the gun if you discover that all the people who are going to run the system are not yet trained. Can the Minister confirm that all this will start with plenty of time before the rollout of this new system? We expect that training should be effective and ongoing. Who will assess the trainers? What is the process for ensuring quality and a national standard? We may well be able to twist something that currently exists and make it work, but I do not have that knowledge. Can he also confirm that, as part of this training, the rights of the individual will be reinforced? Will the training clarify the role that each of these professionals within this new system is going to have in ensuring that an individual’s rights are observed and respected?

[Lord Hunt of Kings Heath (Lab)]

My Lords, I want to follow up the remarks of the noble Baroness, Lady Finlay, by referring to the recent CQC annual report, which had a section on the implementation and practice in relation to DoLS. The report laid out a number of key concerns about care home and hospital providers that are actually using DoLS at the moment in relation to the Act itself. There is a huge variation in practice and this variation is commonly linked with a basic lack of understanding of the law, which is complex and difficult to understand. The report says that the result is that there are unnecessarily restrictive practices that can result in the loss of freedom and, in some cases, the loss of people’s human rights. The problems are reinforced by limited staffing levels, a lack of time to complete applications and inadequate staff training.

I am aware, of course, that the intention of this Bill is to streamline some of those procedures, although I think that, because the safeguards have been drastically reduced, we might be landing ourselves in future problems once the courts begin to hear some of the cases that will arise. The point is that it is quite clear that, at the moment, effective training is not taking place among many of the organisations involved in the operation of DoLS. The risk is that the same will happen in relation to the new legislation. We need some guarantees that there are going to be resources and a concerted training programme to ensure that we mitigate that impact.

[Baroness Thornton]

I will add to the questions that have already been asked of the Minister: who is going to pay for this? Training is very expensive and I was waiting for the noble Baroness, Lady Jolly, to ask that question but she did not, so I am asking it. As I recall from the impact assessment, I am not sure that there is a large sum of money in there for the amount of training that might be necessary to ensure that this Bill is properly enacted.

--- Later in debate ---

[Lord O'Shaughnessy]

I am grateful to all the noble Baronesses for their amendments and for speaking in the debate on this group. Let me begin with a statement of principle. I accept the challenge from the noble Baroness, Lady Thornton, that we need to move from principles to practicalities, or in our case to the appropriate legislation. There is genuinely no attempt in the Bill to restrict people’s access to independent advocacy. As has been clearly voiced, not only in this Chamber but elsewhere, there is a concern that that will be the effect of what is proposed, and that is something that we need to deal with. But let me say at the beginning that that is not the intention. It must be the case that anybody who needs support to navigate these difficult and complex situations must be able to find the right support for them. I will explain why the Bill is as it is in a moment, but let me at least give that statement of principle at the beginning.

I will deal now with the specific amendments in this group. Amendments 63 and 64 aim to ensure that the Bill is robust on the appointment of the IMCA. I completely agree that it is vital that the care home manager notifies the responsible body that an IMCA should be appointed. That is required by the Bill. However, I know that there is great concern about the impartiality of this person and a requirement for strengthening in this regard. It is also our position that a responsible body will be able to appoint an IMCA if there is a request by, for example, a family member or the person themselves, or if there is a disagreement with the notification given by a care home manager. I am considering how we can make the Bill clearer in that regard. As we home in on the issue of the incentives for the care home manager to follow best practice, as we would want, I am aware that we need to do more work on this to get it right.

[Lord Hunt of Kings Heath]

My Lords, that is a very helpful comment but will the Minister pick up the point that part of the problem is that the care manager is not only the co-ordinator but often the gatekeeper to the protections that noble Lords wish to see included? Take, for instance, the definition of “relevant person”. It seems to me, looking at this afresh, that far too much authority is being given to the care home manager in relation not just to co-ordination but to the protections.

[Lord O'Shaughnessy]

I thank the noble Lord for that intervention. The debate we had last week was very much around the proper role for the care “home” manager—I take on board the rejoinder from the noble Baroness, Lady Thornton, about the specificity of terms. I do not want to rehash that debate, save to say that the care home manager model is the right one going forward, while recognising, as I did last week—here I agree with the noble Lord’s point—that there are a lot of concerns about conflicts of interest, training, the degree of responsibility and other things.

In this case, we are talking about notification of the appointment of an IMCA, where there is real concern that there is an element of marking your own homework. That is not what we are trying to achieve: we are trying to achieve the consideration of deprivation of liberty at the earliest possible point in care planning by somebody who is responsible for organising—although in lots of cases not personally delivering—that care. We are trying to deliver a more proportionate system than the one that we know is currently failing. As I committed to in last week’s Committee debate, I want to get that right. If we cannot get it right, the risk is that we end up replicating the system that we have now, which would be in nobody’s interests. I hope that, by restating that, I have satisfied the noble Lord.

Amendments 68, 71 and 72 relate to the criteria for appointing IMCAs. The Bill currently states that an IMCA should be appointed if a person has capacity to consent to being represented and supported by an IMCA and makes a request to the relevant person, and there is no appropriate person available. It also states that a cared-for person should be supported by an IMCA if the person lacks capacity to consent and being represented by an IMCA is in their best interests and there is no appropriate person in place.

I recognise the concern expressed by the noble Baronesses, Lady Barker and Lady Thornton, about the term “best interests”. Let me state again the intention that, in the vast majority of circumstances, we expect it would be in a cared-for person’s interests to receive representation and support from an IMCA or appropriate person. However, there may be a small number of circumstances where that is not the case. For example, if a person is adamant that they do not want this sort of representation, and has refused advocacy support in the past, it would not be right to impose such an advocate on them. If we remove the best interests consideration, we risk a situation where responsible bodies can override the past and present wishes of the person.

--- Later in debate ---

[Lord Hunt of Kings Heath]

My Lords, I shall speak to my Amendment 78, but I should like to say a word in support for the amendments spoken to by the noble Baroness, Lady Hollins, to which I have added my name. These amendments concern the arrangements for the appointment of independent mental capacity advocates and they sensibly seek to ensure that an IMCA must be appointed if the appropriate person would have substantial difficulty helping the cared-for person to understand their rights, involving them in decisions and assisting them to exercise rights of challenge if they wish to do so without the support of an IMCA. I want to make it clear that relevant rights include the right to make an application to the court and the right to request a review of the arrangements. The responsible body must ensure that cases are referred to the court when a cared-for person’s right to a court review is engaged.

The concern is that at the moment, referral to advocacy is controlled by the relevant person, who is the responsible body or the care home manager. An advocate must be appointed if the person has capacity and requests an advocate, which is likely to be very rare, or the person lacks capacity and the relevant person is satisfied that being represented and supported by an IMCA would be in the person’s best interests. The problem, which we have now debated a number of times, is that the right to advocacy seems to be more limited than under DoLS, and it is at the discretion of the relevant person not to refer if it is not considered to be in the best interests. As has been commented on, there are only three references to best interests in the entire Bill, and two are used at the discretion of the care home manager or the responsible body to actually limit the right to an IMCA. We have to build in some more safeguards, including referral to the Court of Protection. The Joint Committee on Human Rights, which looked at the original Law Commission work, said that the responsible body should be under a clear statutory duty to refer cases where others fail to do so.

I was interested to receive over the weekend an email from the carers for HL in HL v UK ECHR 2004, otherwise known as the Bournewood case. They have always been critical when they observe bad practice and the failure to uphold a person’s rights. They say that reading the Mental Capacity (Amendment) Bill and following its passage through the parliamentary process so far has been depressing and leaves them feeling extremely frustrated and angry that the work they started in 1997 and the protections for the person that came about from that work are now being thrown away by this Bill. The lack of any of the protections they argued for individually and collectively, which at least had a fair hearing when they gave oral evidence to the JCHR and, they believe, were mostly reflected in its recent paper, appear to have been completely ignored, as has most of what the JCHR had to say. They say that anything less than the JCHR recommendations, along with nearly all of the proposals from the Law Commission, would be a reduction in the value of a person’s individual rights and against the concept of the MCA and even of the existing DoLS.

Interestingly, their acid test is this: if HL against Bournewood happened today under these proposals, would he be any better protected than in 1997 or under DoLS? They say that given the attitude of the professional employed by the hospital managing authority at the time, the Mental Capacity (Amendment) Bill places more control in the hands of those very professionals and shows less consideration of HL and those who were trying to get him out. In its current form, it is a monumental failure. I know that the Minister thinks that this is an exaggeration, but coming from the carers of HL, it suggests that there are real and genuine concerns about where the Government are going. My fear, as I said last week, is that essentially we are seeing a streamlining of the bureaucratic process and many of the safeguards are being reduced. That is why access to the Court of Protection is so important.

[Baroness Barker]

My Lords, I have tabled one amendment in this group, Amendment 75. I do not wish to rehearse the arguments we had on the previous group but I want to put one question to the Minister. Why in paragraphs 36 and 37 do we suddenly see the term “relevant person” being introduced? It is quite confusing and I shall need to go back and look at Hansard. I do not want to make a wrong accusation, but I think there is confusion about the terms “relevant person” and “appropriate person”, when in fact they are two completely different things. My understanding is that a “relevant person” is either the responsible body or a care home manager, so why do we not talk about that? If that is what is meant, let us be up-front about it.

Amendment 75 asks why the appropriate person as we know them under the Mental Capacity Act has to have capacity to consent to being supported by an IMCA if the purpose is not just to put another hurdle in the way to make sure that these people—let us bear in mind that they do not have a right to be given information under this Bill—have to make a request of the care manager or the care home manager. The noble Baroness, Lady Thornton, is right to say that the Minister has talked about care home managers and care managers; they are different, but all of them have a potential vested interest in making sure that someone does not have access to an IMCA. That, I think, would be a gross dereliction.

--- Later in debate ---

[Baroness Jolly]

My Lords, I shall speak also to Amendments 87, 93 and 94 and address the amendments tabled in the name of my noble friend Lady Tyler and the noble Lord, Lord Touhig. Amendments 93 and 94 are simply enabling provisions.

Amendments 86 and 87 would require that, before the implementation date of this legislation, the Secretary of State should lay before both Houses of Parliament a copy of the updated code of practice giving guidance as well as a response to the review of the Mental Health Act that Sir Simon Wessely is carrying out. We have been half guessing in our discussions what might or might not be in it.

The Bill is not particularly easy to read and it is certainly not a guide for practice, and the ensuing Act will not be easy to read either—unlike the Care Act. The code of practice is absolutely critical to take professionals through what the legislation will entail and what they will have to implement in their practice. To that end, I have a little list. I wonder whether the Minister can indicate or confirm whether these issues will be covered in the code: the basis for detention and when the “necessary and proportionate” test applies; the role of IMCAs and appropriate persons; the professional qualifications and training of those undertaking pre-authorisation reviews; when an AMCP referral should be made; and obligations to provide information to the person and their family about the authorisation. The Minister may not have the answers on his person or from the Dispatch Box right now, but perhaps he could write to me and make that clear.

To make this happen, we would need subsection (2)(a) of the new clause proposed by Amendment 86 and a year’s wait. Many noble Lords have spoken both on and off and in Committee about the Mental Health Act. In our previous debate, the noble Baroness, Lady Meacher, referred to the work of Sir Simon in reviewing that Act along with the Act we are trying to amend now. Between them, the two Acts define, among other things, the care and rights of the most vulnerable—those with mental health conditions and those lacking capacity—who are unable to make decisions about their care. Sometimes, but not always, there may be an overlap. It would not be prudent for the Bill to end its passage through Parliament without us learning the findings of the Wessely review and determining whether it is necessary to amend the Bill further—hence the need for subsection (2)(b) of the new clause proposed by Amendment 86. Earlier today, the Minister spoke about pushing ahead. I understand the need for urgency, but I fear that if we pass the Bill in haste, we may end up repenting or regretting at leisure. That is just me being slightly cautious.

Amendment 87 calls for the Secretary of State to,

“lay a copy of the report before both Houses”.

He or she—who knows who it will be by then—is being asked to look at how the Act is working and whether they are confident that there is an improvement in the process surrounding the deprivation of liberty. We have all discussed this issue; the Minister will have detected the Committee’s concern about this area of the Bill. Basically, I am calling for the Secretary of State to report back on the impact of the Act and ensure that the code is well and truly in place before we start to use the Act in earnest.

I added my name in support of my noble friend Lady Tyler’s amendment, which seeks to ensure that regulations are scrutinised and debated in both Houses. It would also ensure that consultation takes place outside Parliament, which is critical. It is fine for us to debate these issues here—clearly, some people have more experience and understanding than others—but I get many letters from not just individuals who are, or would be, affected by the Bill but the sector, saying, “Keep the Government’s feet to the fire. Make sure we get the very best Bill we can”. I do not doubt at all the Minister’s intention to achieve that end, but the devil is in the detail and there is a lot of it. We must make sure that we get this right through primary legislation. As I said, there is much expertise but we all welcome the opportunity to look at the detail of regulations, both accompanying primary legislation and in any future proposed changes.

Under DoLS, a number of important things were set out in regulations, particularly: who best interests assessors were and how they were to discharge their duties; the timeframe for carrying out assessments; the type of information that would need to be collected; and details of how disputes might be resolved. As my noble friend Lady Tyler will highlight, this is not just about ensuring that regulations are debated; it is about how those in the sector—families and vulnerable people themselves, I would suggest—are consulted and involved in getting the detail right in both initial regulations and any subsequent changes down the line.

To bring this matter into sharper focus, I wonder if the Minister might be able to confirm what he thinks might go into regulation? I hope he would also confirm that regulations laid accompanying this Bill, and any amendments down the line, are subject to the fullest scrutiny both in this House and in the sector. This will mean a decent time gap will have to be found between the laying of the regulations and the debates in both Houses.

I welcome Amendment 92, in the name of the noble Lord, Lord Touhig, which would see another two independent reports commissioned by the Government. They would be laid within two and four years of implementation, to provide a valuable update as to how implementation was proceeding and highlight areas for improvement. We will need to monitor the implementation of the Act, however it may end up, really closely. We are dealing with the most vulnerable in our society.

These amendments are based on the PIP independent reviews, which have proven successful in highlighting problems. While I am sure many in this House would agree that there are still things to improve in terms of personal independence payments, the oversight provided by the independent reviews has been invaluable in terms of recommending important changes aiding implementation. There are many important issues to review: best interests decisions—ensuring that they are just that, and not based on commercial or other considerations; a monitor of advocacy offered and its uptake; the involvement of P—the cared-for person—and not just professionals, but also those who care for P, and the families of P. I am happy to support those particular amendments, and beg to move.

[Lord Hunt of Kings Heath]

My Lords, I have three amendments, starting with Amendment 87A. It sets out a number of requirements before the Act can come into force, embracing a set of independent reports that I would like to see commissioned by the Secretary of State. They address work on the rewording of the expression “unsound mind”; the availability of independent advocacy; appeals on behalf of cared-for persons; the availability of legal aid and support for cared-for persons participating in court proceedings; and short and long-term costs for implementing provision bills for local authorities, the courts and the health service. I recognise some of these points have already been discussed, on the second day of Committee in particular, and the Government are bringing forward amendments so the Bill reflects the need to consult the cared-for person. The Minister also agreed to look further at the expression “unsound mind”, which many believe is stigmatising and outdated language.

I hope the Government might just go further. This amendment is based on the report of the Joint Committee on Human Rights and reflects some of the issues it would like to see covered in legislation. I will not comment in detail, but I want to come back to the role of the Court of Protection. We discussed this on the second day of our proceedings, and I think the Committee was informed by the view that recourse to the Court of Protection should be avoided wherever possible, because of the stresses and strains involved and the cost. I am certainly conscious that we do not want to create a situation where mental capacity professionals defer their responsibility to the court, and individuals have to undergo court procedures unnecessarily.

According to Dr Lucy Series of the School of Law and Politics at Cardiff University, while the cost and stress of applications to the Court of Protection is undeniable, research by Cardiff has shown that the Government have taken the decision not to reform the Court of Protection, which would make it less costly, less stressful and more like the tribunal approach that many noble Lords would like to see. It is instead being managed by, essentially, restricting access to justice. A week ago, the noble Baroness, Lady Stedman-Scott, said that,

“if a person wants to challenge their authorisation in the Court of Protection they have the right to do so”.—[Official Report, 15/10/18; col. 371.]

However, the practicalities are that people may experience extreme difficulty initiating a court action without assistance, as will their families. The evidence on this matter was very clear to the House of Lords Select Committee on the Mental Capacity Act and the Law Commission. I hope that the Government will consider it.

Personal Social Care: Funding

Lord Hunt of Kings Heath Excerpts

Tuesday 16th October 2018 Lords Chamber

[Lord O'Shaughnessy]

The noble Baroness makes an excellent point. I do not know about the distribution of such services, but she is absolutely right that what everybody wants—the cared-for person and those looking after them—is to stay in their homes and remain independent for as long as possible, which is why so much more care must be delivered in the home. I will write to her on the specifics of meals-on-wheels services.

[Lord Hunt of Kings Heath (Lab)]

My Lords, the noble Lord talked about taking a firm policy decision. I have yet to understand why the Government commissioned the Dilnot commission, accepted the principles of its recommendation, legislated to introduce it but then failed to implement it. Why?

[Lord O'Shaughnessy]

The noble Lord is right: the Dilnot commission proposed risk pooling, which we legislated for, and it was decided that it was not the right time to proceed with those proposals. However, I can tell the noble Lord that Sir Andrew Dilnot continues to be involved in the policy-making process, as does Dame Kate Barker, who chaired another review. We want to ensure that we can draw on their expertise as we put our ideas forward.

Mental Capacity (Amendment) Bill [HL]

Lord Hunt of Kings Heath Excerpts

Committee: 2nd sitting (Hansard): House of Lords
Monday 15th October 2018 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, any restriction to a person’s liberty is a serious step that calls for a corresponding level of scrutiny. To do otherwise would devalue the currency of liberty. We must remember how this legislation will work in practice and that it is authorising one citizen to detain another, usually more vulnerable, citizen. This decision carries risks, not least the risk of undermining an individual’s self-esteem and dignity. Therefore it is imperative to ensure that only appropriate and experienced individuals are given the authority to assess capacity and plan the care programme for the cared- for person, with their best interests at the heart of decision-making.

I will speak to the amendments in this group that are in my name—Amendments 14A, 16A, 19C, 19E, 19F, 30C and 32C—which seek to probe an alternative to involving the care manager directly in the process and to align it more closely with the Care Act. Much anxiety has been expressed since Second Reading about the role of the care home manager because there has been concern that the manager is not an appropriate person to carry out or even co-ordinate assessments. There have also been concerns that the cost of providing adequate training would be high and that the proposed training of a few hours would prove grossly inadequate.

The Minister gave assurances on the first day in Committee when he explained that,

“the care home manager would be responsible for arranging the assessments for the responsible body—not necessarily carrying out but arranging”.—[Official Report, 5/9/19; col. 1882.]

He pointed out that care homes already play a role in arranging assessments because they are responsible for identifying deprivation of liberty and then notifying the relevant local authority which under current arrangements, will then send out a best-interests assessor to visit and assess. He pointed out that the assessments that the care home manager will have a duty to arrange will be carried out at the care assessment stage as part of early planning, often by social workers.

However, in discussion with stakeholders, concern has highlighted self-funders, who could risk getting a low level of protection in law and find that the cost of assessment is rolled into their care home costs. Whatever is decided, a care home manager will remain responsible for identifying those whose liberty is restricted and therefore will be responsible for triggering assessments. Nothing in the Bill permits searches to case-find anyone who has not been flagged up and therefore is illegally detained.

Unfortunately, the concerns expressed by stakeholders have not diminished, despite the many meetings at which reassurances have been offered. Those concerns include that the care home manager, even if not undertaking assessments directly, would have a power of veto and that the authorisation of assessments would become a paper exercise. There is also concern that the costs associated with making the assessment would be transferred from the local authority to the care home, but that the funding would not move from the local authority to the care home, leaving the person being assessed, if they are a self-funder, to carry the burden of additional costs.

Regarding conflicts of interest, although some care managers are excellent, not all have the appropriate background experience, and the local authority would remain liable in law for authorising the deprivation based on information from the care home manager. But we must not lose sight of why the Bill is here. The number of people waiting for assessments seems to be rising exponentially and is currently around 125,000 in England and Wales. Even if money was thrown at assessments now, there are not enough people and the current process is too complicated to ensure that they happen.

It is relatively easy to talk about a process, but we must focus on the individual. To the individual, it is not the assessment per se that protects their liberty but the way that they are cared for on a day-to-day basis. They can have the most thorough assessment in the world, but if it is a once-a-year process, they may spend the rest of the year with restrictions on liberty that go unnoticed. That is why a new process to protect liberty must link directly to the care plan that contains details of how the person’s freedoms will be enhanced and how they will be empowered within the ethos of the Mental Capacity Act to live as well as possible. Some may argue that you can have a well-written care plan that is not carried out, but later amendments would enable people to raise concerns and request a reassessment.

It is important to recognise that necessary and proportionate arrangements may restrict liberty in some areas in order to empower the person to live as fully as possible despite the restrictions that their disorder has imposed on them. In some care homes a great deal is done to enhance living through outings, personalised crafts and musical arrangements, or when residents are encouraged to pursue their interests while keeping them safe from obvious dangers. Sadly, in other care homes residents are left sitting in a circle around a blaring television. Their experience means either that they have a low quality of life or in effect feel imprisoned.

It is the day-to-day living experience that matters. The way the care is delivered to allow that experience should be enshrined in a good care plan that encompasses encouraging social interaction and contact with the family, and accepts a reasonable degree of risk while avoiding clearly identifiable major risks. It should specify what the protection of liberty arrangements are that need to be approved by the responsible body. Words matter. Perhaps we should drop the words “liberty protection safeguards” because they can be confused with safeguarding procedures and instead use the term “liberty protection arrangements”, which would probably be abbreviated to PoLAs to replace DoLS.

I know that Amendment 14A looks strange because it comes half way through a paragraph. Ideally the amendment would delete the whole of paragraph 13 in Part 2 of Schedule 1, but given that we reached the end of line 35 on day one of Committee, I believe that the amendment can start only at line 36. However, I hope that the other amendments I have tabled in this group make better sense if we understand that the whole of paragraph 13 should have been deleted.

We know that we cannot throw money at a failing system and that not everyone needs the full might of the current assessment process of DoLS. If care homes are not described differently, it may open the way for others to be required to do the assessments in all settings by the responsible body’s direction, which would mirror Section 42(2) of the Care Act, which states:

“The local authority must make (or cause to be made) whatever enquiries it thinks necessary to enable it to decide whether any action should be taken in the adult’s case (whether under this Part or otherwise) and, if so, what and by whom”.


That subsection was designed to safeguard by triggering an inquiry if there is a suspicion of unmet care needs, abuse or neglect. In the amendments I have tabled, I have tried to make the responsible body reflect the same arrangements so that it would either provide assessments or cause them to be provided. Many supported living settings are competent to do such assessments and many care homes could do them in routine cases by being asked for information by the responsible body without any power of veto resting with the care home manager.

I am grateful to Lorraine Currie, the professional Mental Capacity Act lead in Shropshire, for discussing this with me in detail. I hope that by more closely aligning liberty protection with the Care Act we might have a more streamlined process. I beg to move.

[Lord Hunt of Kings Heath (Lab)]

My Lords, Amendments 17A, 19A, 30B, 30D, 32B an 32E are in my name. The noble Baroness, Lady Finlay, expressed very well some of the key challenges we face in scrutinising the Bill. My amendments would remove the role of the care manager in overseeing the determination that the arrangements are necessary and proportionate. They would also remove the care home manager from carrying out consultation to try to ascertain the cared-for person’s wishes or feelings on the arrangements. In both cases, the result of my amendments would be that responsibility falling to the responsible local authority.

The noble Baroness, Lady Finlay, spoke about the issues facing the sector in trying to implement the current legislation. The problem seems to be that the Government, in their haste to respond to this and the undoubted challenge of the Cheshire West judgment, have come up with a streamlined procedure in which the human rights of the cared-for person are sacrificed on the altar of bureaucratic convenience. The careful balance that the Law Commission put into the draft Bill has been overturned, safeguards have been removed and protections have been overridden. The analyses we have received have been very valuable, but the Law Society’s analysis is a succinct, devastating critique of the Government’s approach.

The proposal means that the very people with a vested interest in keeping cared-for people occupying beds in care homes have been placed in the driving seat in the process of overseeing the restriction of their liberty. According to the Bill, those cared-for persons have lost the right to participate in decisions affecting them, have no right to be consulted, have no right, like their relatives, to be told how to challenge a deprivation of liberty and have no right to request a review. On that latter point, they must rely on the interested person who, when you look at the Bill, remarkably turns out to be the care home manager; nor is there any obligation for the responsible body to meet the cared-for person before signing off on their deprivation of liberty. That is the background to why the amendments are so important and why the Bill’s basis is so flawed.

I cannot find an explicit duty to consult the cared-for person about their wishes and feelings. That is worrying in itself; it is a major defect in relation to the existing legislation. I also find worrying the extraordinary proposition that the care home manager should carry out the consultation. Essentially, they are judge and jury for the person’s liberty, since the consultation is about the outcome of the required assessment that the care home manager is responsible for arranging. As far as I can see, the care home manager will choose who will make that assessment and, presumably, pay their fees. They are also the gatekeeper for the appointment of an independent mental capacity advocate, which cannot happen without the care home manager saying that it is in the cared-for person’s best interests. However, we can see that the care home manager has a vested financial interest in these matters, as does the care home. On consultation, the Bill must be seriously rethought. That also applies to paragraph 16 of Schedule 1 on the determination that arrangements are necessary and proportionate. Currently under the Bill, it falls to the care home manager to decide who should make the determination. This, of course, is a vital test and the determination of the arrangements relates directly to the practice under Article 5 of the European Convention on Human Rights.

--- Later in debate ---

[Lord O’Shaughnessy]

We believe that case law does establish that suitably qualified people need to be appointed. Clearly that is something we need to continue to discuss to persuade the noble Baroness that that is the case, but that is our understanding. As she pointed out, “suitably qualified” can include medical and other qualifications.

On care home managers’ capacity, they are of course carrying out some assessments. The intention is they will carry out more assessments. I agree with the noble Baroness on that point. The point that the noble Baronesses, Lady Barker and Lady Thornton, raised was about the capability and capacity of this group of people to carry out these roles. On our previous day in Committee I committed to explain how we would ensure that that group of people had the requisite training and skills to carry out these kinds of assessments.

The noble Baroness made a point about weakened access. I want to update the House on our thinking about making sure that the person is consulted. We are trying to create a more proportionate system such that, where all those concerned with the care of a person are content that the arrangements have been properly put in place, it does not need to be escalated and reviewed by an AMCP or similar person. The problem we have at the moment is that the system takes every decision to the highest possible level. This is not about weakening access but about trying to have a proportionate system and also about making sure—we will debate this further tonight—that at every stage there are the right opportunities to seek advocacy support and to refer concerns so that an AMCP or responsible body can intervene and review a case if necessary.

Unless we find a way to deliver a more proportionate system we will simply be re-enacting the system we have now, which is not working. This is why I am so keen to work with noble Lords to make sure that we can determine the proper role and responsibilities of, and checks and balances on, care home managers so that we can get the system right and deliver a reform that saves money, enables more people to have their cases reviewed and enables us to make sure that people are protected, which is what we want to do.

[Lord Hunt of Kings Heath]

The Minister read out a list of safeguards that will still be in place despite the streamlined nature of the Bill. The issue I have with that is that the care home manager seems to act as the gatekeeper to many of them. I hear what he says about a streamlined approach, which I agree with, and I also hear what he says about the people who will do the assessment. But there is still a real issue about why the care home manager, of all people, is the person overseeing this whole process. If the Government are really willing to sit down and talk about how to achieve a streamlined programme but continue with some of the essential safeguards that are in the Bill at the moment, clearly the role of the care home manager has to be looked at seriously.

I am not really hearing from the Government whether they are seriously prepared to debate the fundamental construct that they have come forward with. It seems to me that they dreamed up an answer to the problem but did not consult fully—they had selective consultation where individuals were picked off—and the result is that they do not now have consensus support, and the Bill is in trouble because of that.

--- Later in debate ---

[Lord Hunt of Kings Heath]

My Lords, my Amendment 37A would preclude the care home manager undertaking the pre-authorisation review, which follows on from what the noble Baroness, Lady Meacher, was saying. However, the Minister floated his answer to this point very recently. I thought I caught him saying that the pre-authorisation review can be done only under the auspices of the responsible body. Perhaps he can confirm that when he comes to speak because it is not clear in the Bill, as I see it. On page 10, paragraph 12 of Schedule 1 states:

“The responsible body may authorise arrangements, other than care home arrangements, if … a pre-authorisation review has been carried out in accordance with paragraphs 18 to 20”.


That relates to those cases where the care home manager does not have a role. Paragraph 13 of Schedule 1 simply states:

“The responsible body may authorise care home arrangements”,


if a number of qualifications have been met, including if,

“a pre-authorisation review has been carried out in accordance with paragraphs 18 to 20”.

I cannot see anything in the Bill that says that the pre-authorisation review cannot be carried out by the care home manager. If that is the case, it would be nice to see its inclusion in the Bill, which would provide some reassurance.

I know that we always stray here because we keep coming back to the issue of a conflict of interest. Has the Minister read the Law Society’s view, which we received over the weekend? The society described the fact that the care home manager has been put into a position of co-ordinating the way in which the Bill needs to be operated when a care home setting is involved as a “conflict of interest”. It stated:

“Vulnerable adults would be put at risk if care homes were given increased responsibility for decisions about their liberty”.


It also said that important safeguards “would be weakened”, stating that the,

“shift of responsibility for carrying out independent assessments of vulnerable people from local authorities to care providers”,

is not something that the Law Commission developed. However, we are working on the basis of a Law Commission draft Bill.

Although the noble Lord is as committed as ever to the care home manager having this key role, I am not at all convinced that this really is feasible. It will not be good enough for the Government to provide reassurance, which I doubt they can, about the training of care home managers and their capacity to carry out this responsibility, particularly in view of the big backlog that will have to be confronted, I suppose, by the care homes. I do not see any provision in the Bill for the current backlog to be dealt with under the existing legal requirements. There is a great deal of scepticism about whether this is going to work.

[Baroness Finlay of Llandaff]

My Lords, I have one amendment in this group and I wonder whether the group is focused on lines of answerability. Who is going to be responsible? If the person is in the community in any setting the responsibility will go or should go, as I understand it, to the local authority. If the person is in hospital then it would go to the hospital. However, we have a problem. A lot of people on continuing care funding are in the community. I am concerned that if the authorisation for those people sits with the clinical commissioning group rather than the local authority, we may end up with some people getting lost in the system. The standards and criteria against which the different assessments and processes are benchmarked and what is expected, particularly how the process is monitored, could be unclear. It will be much harder to monitor out in the community than in a hospital or in-patient setting.

Following on from our previous debate, I had a quick look at the requirements to be a best interests assessor. As far as I can see, to enrol on the course you must have had two years’ post-registration experience as an approved mental health professional social worker, registered with the Health and Care Professions Council, or be a nurse, a psychologist or an occupational therapist. The people who potentially will migrate to become approved mental capacity professionals are registered professionals. That is incredibly important and we should not lose that in any aspect of the Bill. If they are registered professionals they have a raft of professional duties that go with that.

This part of the Bill and the process is not terribly clear, and I worry particularly about people on continuing care out in the community, or those who may become self-funders, managing their own budgets for care.

Mental Capacity (Amendment) Bill [HL]

Lord Hunt of Kings Heath Excerpts

Monday 15th October 2018 Lords Chamber

[Baroness Thornton]

My Lords, I will speak to two amendments in my name in this group, although I may also come back on what has been said.

Amendment 23 concerns supported decision-making and is based on Clause 12 of the Law Commission’s draft Bill. The amendment would require a clear determination,

“made on an assessment that steps to establish supported decision making are not practicable”.

It states:

“Steps to establish supported decision making are practical if, in relation to decisions about their personal welfare or property and affairs (or both), a cared-for person— … is aged 16 or over, and … has capacity to appoint a person to assist them in making those decisions”.


Amendment 24 concerns the restriction of defence and is based on Clause 9 of the Law Commission’s draft Bill. It states:

“The assessment must include … a description of the steps which have been taken to establish whether the cared-for person lacks capacity”.


NICE recently released guidelines on what it thinks the Bill should say regarding supporting a cared-for person:

“Support people to communicate so that they can take part in decision-making. Use strategies to support the person's understanding and ability to express themselves in accordance with paragraphs 3.10 and 3.11 of the Mental Capacity Act”.


NICE also recommended:

“Practitioners should make a written record of the decision-making process, which is proportionate to the decision being made. Share the record with the person and, with their consent, other appropriate people. Include: … what the person is being asked to decide; … how the person wishes to be supported to make the decision … steps taken to help the person make the decision … other people involved in supporting the decision … information given to the person … whether on the balance of probabilities a person lacks capacity to make a decision … key considerations for the person in making the decision … the person’s expressed preference and the decision reached … needs identified as a result of the decision … any further actions arising from the decision … any actions not applied and the reasons why not”.


These basic and important matters were included in the Law Commission’s draft Bill but not adequately included in this Bill. I am pleased to be part of this group and able to raise these issues. I will let my noble friend Lord Hunt talk about Amendment 50ZA.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I am very grateful to my noble friend for that invitation. Amendment 50ZA refers to circumstances in which the pre-authorisation review is not undertaken by an approved mental capacity professional. Paragraph 18(2) of Schedule 1 sets out the circumstances where that applies, stating that the AMCP will be brought into play where,

“the arrangements provide for the cared-for person to reside in a particular place, and it is reasonable to believe that the cared-for person does not wish to reside in that place, or … the arrangements provide for the cared-for person to receive care or treatment at a particular place, and it is reasonable to believe that the cared-for person does not wish to receive care or treatment at that place”.

Paragraph 20 of Schedule 1 sets out what the person carrying out the review needs to do,

“if the review is not by an Approved Mental Capacity Professional”,

but it does not say who should do it. I want to raise this issue with the Minister. Clearly, there is concern that it may not come to the attention of the responsible body that the cared-for person does not wish to be treated in a particular place or receive a particular form of care or treatment. We could go back to the architecture of the Bill. We think that it puts too much authority in the hands of the care home manager who, in many cases, has to unlock the door to allow these concerns to be raised. Given that some people should be assessed with their review undertaken by an AMCP, but this will not happen, it is important to know the circumstances under which the review would then take place.

Essentially, my amendment is a probing one. The pre-authorisation review referred to in paragraph 20 of Schedule 1 does not have to be done by an AMCP, but Amendment 50ZA says that the person who undertakes it should at the very least,

“be qualified as a medical practitioner, nurse, social worker, speech therapist, occupational therapist or other profession as may be specified in regulations”.

That covers the point made earlier by the noble Baroness, Lady Finlay, that those professions are regulated. It is important for us to be clear. Some people may fall through the net and not be seen to qualify under paragraph 18(2) of Schedule 1. Therefore, the people doing the reviews who are not AMCPs must have enough professional standing to identify problems that might arise. I hope that the Minister, who is in a concessionary mood today, will agree to look at that.

--- Later in debate ---

I have one final point on Amendment 50ZA. I believe that it would also allow responsible bodies to determine in care home cases whether somebody has the necessary skills and experience to complete a necessary and proportionate assessment. I think that was the intention.

[Lord Hunt of Kings Heath]

No, it was not.

[Lord O'Shaughnessy]

In which case I will not go any further.

On that basis, I hope that I have dealt as thoroughly as I can with the substance of all the amendments in the group. Clearly, we want to make sure that the evidence is as good as possible when making these very important and serious decisions. As I said, in this instance the code of practice is a good vehicle for much of this work. On that basis, I hope noble Lords will not press their amendments.

--- Later in debate ---

[Baroness Murphy]

I support the comments made by the noble Baroness, Lady Hollins, on some of the training issues. Like many people here, I suspect, I have spent a great number of years training junior doctors in how to use mental health legislation, as well as social workers and occupational therapists. One of the most difficult things is to convey the culture of what we are trying to achieve in legislation of this kind. We all refer to the European court and the agreements, but what we are trying to achieve for individuals and why is difficult for many people to grasp when they have grown up in a very didactic, academic environment, where these things are not necessarily considered.

A key aspect of that cultural shift which is so required is the problems that arise between relatives, carers and professionals over what should happen to an individual. All the way through this Bill, I have been scratching my head and thinking, “Will this solve the Bournewood problem?” All the cases from Bournewood onwards have arisen because of a cavalier approach or attitude by professionals to discussing with relatives and carers what the individual wanted, needed or was used to. If we do not get those things right, we will not solve the problem and there will be another case because it will all be up again for grabs where the professional training has not been accurate.

I note that there are some very specific proposals about care home managers. There are some very specific difficulties about what training care home managers currently have, and it is absolutely basic and rudimentary. It is largely about keeping the accounts right. We need to find a way to get the culture of what we are trying to achieve for individuals and families into this Bill. Exploring those training options is crucial if we are to avoid another Bournewood.

[Lord Hunt of Kings Heath]

My Lords, the noble Baroness, Lady Murphy, has made a very telling comment. Part of the issue of training is cost. It seems to me that part of this Bill is about cost shift from local authorities, which have found managing this process very difficult, to care homes. We have not discussed this very much, but will the Minister tell us who he expects to pay the cost of this whole process? I suspect that the answer is that it is going to be in charges, mainly for self-funders, who not only will probably pay the cost of their own assessment, but will probably—as they do at the moment—have to subsidise the cost of local authority-funded people who come under the provisions of the Act. Clearly, the Government did the RIA on the basis of trying to show that the cost will be minimal in order to prevent being rumbled on essentially what they are seeking to do, which is clearly to cost shift the public sector in favour of self-funders.

The RIA is simply non-believable, and puts into question quite a lot of the architecture of the Bill. We know that care home managers, as the noble Baroness, Lady Murphy, said, have rudimentary qualifications. We also know that the turnover for care home managers is quite high. Therefore, major new responsibilities are being given to people who are in a sector where they are often pretty poorly paid; they do not have much training, and they do not have professional qualifications in many cases.

Training is very important indeed, and we need to have some answers as to how this is actually going to happen and who is going to pay for it. If the answer is that it will mainly be paid for by self-funded, vulnerable people, I do not think that is right.

Mental Capacity (Amendment) Bill [HL]

Lord Hunt of Kings Heath Excerpts

Committee: 2nd sitting (Hansard - continued): House of Lords
Monday 15th October 2018 Lords Chamber

[Baroness Hollins]

My Lords, I welcome the amendment tabled by the noble Baroness, Lady Finlay, which seeks to ensure the wishes and feelings of the person are at the heart of decision-making. My Amendment 33 follows this principle by adding the cared-for person to the list of people with whom the assessor is required to engage before arrangements can be authorised.

Self-advocacy groups and charities supporting people with learning disabilities and their families have shared their concerns that the Bill does not require sufficient regard to be paid to their views in particular. I will quote some views expressed by Learning Disability England, a membership organisation:

“Disabled people and their families are especially worried that there is no requirement to consider the person’s own wishes. That is how the institutions were … We do not want to go back to the days of the institutions … There is a risk that we take away people’s independence and give power to people that may not be doing a good job”.


Consulting with people who lack capacity can be challenging and requires quite advanced communication skills. It is crucial that we get this right as the consequences are significant and lead to other improvements or deteriorations in people’s health and independence. I declare an interest here as chair of the Books Beyond Words community interest company, which develops resources and pictures to help doctors, nurses, care staff and others to communicate more effectively with people with learning disabilities and others who find pictures easier than words and to support decisions which, at their outset, appear too difficult or challenging.

Amendment 35 is designed to oblige those carrying out the assessment to explore less restrictive alternatives thoroughly. This would need to take into account the cared-for person’s family and others who know them well and have an interest in their welfare, who are likely to have important information and expertise to share about the person’s needs and what good support, which maximises their freedom, might look like.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I have added my name to two of these amendments. We heard earlier that the Minister has agreed that the Bill at some point in the future will reflect the need to consult the cared-for person. This is clearly a great advance and sets the context for the debate on this group of amendments. I particularly commend the suggestion that the consultation should be not just about what the assessment has concluded should be done to the cared-for person—I fear that the sense of the Bill at the moment is “done to”—but what the alternatives are.

This is where I come back to one of our problems with the architecture of the Bill. So much responsibility is given to the care home manager who, inevitably it seems to me, must think about residence in a care home as being the only option because their job is to make sure that occupancy is of the highest level in order to maximise the viability of the home. It would be good to know how the Government think with this Bill and the new arrangements we are going to ensure that the alternatives are properly looked at before someone’s deprivation of liberty is actually authorised.

[Baroness Barker]

My Lords, can I take this opportunity to ask the noble Baroness some questions? Can she confirm my understanding that this duty to consult does not come under Article 4 of the Mental Capacity Act? As I read the Bill, the responsible body or the care home manager is under a duty to consult only in so far as they deem it to be practicable or appropriate to do so. They make that decision. Is that correct? Under DoLS, if somebody was “unbefriended” and if there was nobody to consult, that automatically triggered the right to an advocate. I do not believe that is the case under the Bill. Finally, this duty to consult is a stand-alone one. What happens as a result of that consultation? For example, it does not make it clear that if a family—like Mark Neary—objects to a placement, it does not trigger the need for an AMCP or another assessment. Yes, there is a long list of people but, as I understand it, there is no nearest-relative rule as there is under mental health legislation. There is no sequential order. My basic question is: what happens as a result of this duty to consult? It is not clear to me that anything necessarily happens.

NHS: Dangerous Waste and Body Parts Disposal

Lord Hunt of Kings Heath Excerpts

Wednesday 10th October 2018 Lords Chamber

[Lord O'Shaughnessy]

I thank my noble friend for her question. I will certainly take up the issue of waste disposal in general with my colleagues in Defra who, as she knows, are responsible for it. On the specific question of incineration capacity, Defra calculated that in 2017 there was a total of more than 30,000 tonnes of spare capacity for clinical and hazardous waste incineration. That was across a year, but we know that the NHS has identified more than 2,000 tonnes of incineration capacity this month. So the capacity is there; the point is that it should be used to get rid of the stockpile. As I said, the contracts are now in place to ensure a continued flow of service to NHS trusts.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I do not understand the timescales in this. According to the Statement, the Environment Agency notified the Government on 31 July. Why did it take until October for NHS Improvement to write to the company expressing its concerns? As for reporting to Parliament, we met for two weeks in September. Why did Ministers not come to the House during that period? The Minister seems to be saying that commercial secrecy trumps public accountability.

[Lord O'Shaughnessy]

I am absolutely not saying that. To go through the timescale, the noble Lord is quite right that 31 July was the escalation from the Environment Agency to Defra, which then contacted the Department of Health and Social Care. Ministers were informed on 8 August, by which point a huge amount of effort had gone in not only to analyse the problem but to put in place contingency plans. A final enforcement notice for the Normanton site was issued by the Environment Agency with a need to comply by 25 September, which fell after the two-week Sitting that we had in September. In the meantime, plans were put in place—the Secretary of State chaired a cross-government meeting—and on 3 October the partial suspension was put in place. That is what triggered the termination of contracts by NHS trusts and their replacement by a new contract with Mitie.