Mental Capacity (Amendment) Bill [HL]

Baroness Thornton Excerpts

Monday 15th October 2018 Lords Chamber

[Baroness Barker]

Following on from the observation made by the noble Baroness, Lady Murphy, one of the most common restrictions of liberty is medication and medication reviews. We often think of it as being physical but it is not. New medicines often come online and create change. I take her point and hope we will be able to work towards a definition.

[Baroness Thornton (Lab)]

I will not add much more because the noble Baroness, Lady Finlay, has done us all a favour by putting forward great questions exploring the Cheshire West ruling. The Joint Committee on Human Rights agrees that a definition needs to be found, otherwise—the noble Baroness is right—we will be back in a situation where things have not gone right and we end up in court again. We all need to put our minds to this. We should be able to find a definition and I look forward to the Minister leading that particular discursive discussion across the Committee.

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[Baroness Tyler of Enfield (LD)]

My Lords, I rise to lend my support to Amendment 21 tabled in the name of my noble friend Lady Barker and to speak to Amendment 22, which is tabled in my name. Amendment 22 is essentially about who should be able to determine whether an individual is, as it currently states in the Bill, “of unsound mind”. That is the terminology being used, but I would prefer to see terms like a “disorder” or a “disability” of the mind. That is one of the three key authorisation conditions. Perhaps I may say again how very pleased I am that the Minister has indicated his willingness to look at some new language so that we do not use the term “unsound mind”, which in my view is stigmatising and has no place in today’s society.

I return to Amendment 22. Currently, the authorisation arrangements in this part of the Bill state that a medical assessment has to be made but do not state who has to make it. It is likely that most people would assume—indeed, it may well be that the Government are assuming it and no doubt the Minister can reassure us on the point in his response—that a medical assessment needs to be carried out by a registered medical practitioner. However, it would be helpful and reassuring to have that made clear in the Bill. The report published earlier this year by the Joint Committee on Human Rights is clear that, in order to comply with human rights law, any deprivation of liberty under Article 5 requires,

“objective medical evidence of a true mental disorder of a kind or degree warranting compulsory confinement, which persists throughout the period of detention”.

Given the requirement for “objective medical evidence”, my contention is that there needs to be a guarantee in the Bill that only a registered medical practitioner with appropriate training has the power to determine whether someone has an unsound mind or mental disorder, depending on which language is going to be used.

[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.

[Baroness Finlay of Llandaff]

My Lords, three amendments in this very important group are in my name. I fully support the stress being placed on the need to see whether, with additional help and support, the cared-for person could make their own decision. It is always better if they can take their own decision over any aspects of their care that need to be in place. For example, providing support to young people with learning difficulties or people with an expressive disorder may require special skills, time and patience to support them to make their own decision. However, the Mental Capacity Act is clear that every effort must be made to support people.

It is also right that the way in which support is provided, as well as the evidence for why such support may have failed, should be recorded—as in Amendment 23, which I strongly support. Decisions should be based on evidence as much as possible, not on the personal opinion of the assessor, although there will always be a degree of interpretation of evidence. For people in community and supported living settings, this will be important to stress as they may agree with and consent to certain aspects of the care plan but not understand others—so it is not an all-or-nothing. However, even if the person does not appear to understand, everything must be explained as fully and clearly as possible. It will be important for any such evidence submitted to support the deprivation of liberty to come from the professional responsible for the care plan, whoever that is.

We have already debated the role of the care home manager. For consistency, I have removed the care home manager from this part of the Bill. I should apologise to care home managers for my use of “secretary” in relation to their role, which could be misinterpreted. I did not mean to cause offence; I just wanted to make sure that we recognise that the care manager and the care home manager are often different people.

In response to the amendment tabled by the noble Baroness, Lady Jolly, I would advise caution. In some situations, a specialist clinical psychologist may be better than a medical practitioner at undertaking the assessment. I would hate for us to end up with the view that the doctor would always be the best person to do the assessment because I do not think that they always would be; there may well be others.

I welcome the addition of speech and language therapists. They have a great deal to offer to people with expressive disorders and can often establish communication when other people think that the cared-for person lacks capacity but in fact they simply cannot express themselves.

[Baroness Thornton]

Yesterday or on Friday—whenever it was—we received a very helpful briefing from the Royal College of Psychiatrists. I found what it had to say on Amendment 22 very useful:

“The Royal College of Psychiatrists believes that only a ‘Registered Medical Practitioner’ should be able to determine whether an individual has a ‘disorder or disability of the mind’ … Currently the authorisation arrangements in Part 2 of the Bill say that a capacity and medical assessment has to be made, but does not say who has to make it. It is likely that the Government is assuming that this would be carried out by a ‘Registered Medical Practitioner’ but it would be helpful to have it on the face of the Bill.


The JCHR report was clear that in order to comply with human rights law, any deprivation of liberty under Article 5(l)(e) requires ‘objective medical evidence of a true mental disorder of a kind or degree warranting compulsory confinement, which persists throughout the period of detention’.


Given this requirement for ‘objective medical evidence’, there needs to be a guarantee in the Bill that only a Registered Medical Practitioner with appropriate training has the power to determine whether someone has an ‘unsound mind’ or ‘mental disorder’”.

[Lord O’Shaughnessy]

I am very grateful to all noble Lords for tabling amendments on this very important topic of making sure that when these decisions are made and the assessments of them carried out that they are done on the best possible evidence. That informs all the amendments in this group.

We have talked already about the role of the care home manager in arranging assessments and providing a statement to the local authority while the assessment is conducted by a suitably qualified professional. Clearly we will explore that further following the debate tonight. It is also clear that in many cases care home managers will be using assessments that have already been conducted, wherever possible, ensuring that we reduce duplication. There is clearly a balance between making sure that we have access to the best possible information and not creating extra burdens on the system to duplicate work where a previous assessment would be useful, up to date and valid.

I will deal with the amendments in turn and try to think about how we can get that balance. Amendment 21 in the names of the noble Baronesses, Lady Barker and Lady Jolly, would remove the ability of care home managers to rely on previous medical and capacity assessments. It would mean that assessments could be relied on only if responsible bodies judged it appropriate. Our belief is that where valid assessments are already in place and have been completed by a suitably qualified professional—such as those completed as part of a care plan—they should be used. We are concerned about the implications of the amendments in this group because of the duplication that could arise, particularly perhaps if there is a difference between assessments and each person who carried out the work is still of the view that their judgment was the correct one. We need to be concerned about that as we are trying to simplify the system.

We also do not believe it would be proportionate to expect care home managers to seek permission from a responsible body on every case where there is a previous or equivalent assessment, especially when it is clear for example that somebody has a lifelong diagnosis such as a learning disability and a previous assessment can be reasonably expected to provide valid and reliable evidence of this.

I understand the intention of the noble Baronesses in wanting to avoid care home managers relying on previous assessments when it is not appropriate to do so, which I think is what has informed these amendments. That is where the responsible body reviewing is incredibly important. Generally speaking it will be a senior social worker who will be able to examine the case and if there is an overreliance on past—particularly quite long-dated—assessments in that statement, it will be a flag for escalation to the AMCP.

I understand why there is concern about giving too much leeway to the care home manager, but I also think the amendment would deliver a disproportionate system. It would not provide the degree of flexibility we want and therefore we intend to outline the appropriate use of previous assessments in the code of practice. I think that that is the appropriate vehicle.

Amendment 22 in the name of the noble Baroness, Lady Tyler, seeks to ensure that medical assessments are completed by a registered medical practitioner. Clearly our intention is that that should be the case, and that the person who conducts the medical assessment must be suitably competent. I use that word rather than “qualified” and we will set out further detail in the code of practice. As was stated by the noble Baroness, Lady Thornton, and others, human rights case law already requires that a deprivation of liberty must be based on objective medical expertise. That can be done on a competence basis rather than on qualifications. Qualifications change whereas competencies, by and large, remain the same. That is why we will focus on a competence-based approach rather than listing professions in a code of practice. A code of practice gives us the ability to exemplify the kind of competencies we mean without being restricted, which would be the case if it were in the Bill, to only certain categories of worker, which might change over time.

Amendment 23 in the names of the noble Baroness, Lady Thornton, and the noble Lord, Lord Hunt, creates a duty under liberty protection safeguards to assess whether steps to establish supported decision-making are practical. As I am sure noble Lords know, supported decision-making is already part of the law, and indeed it is the second principle of the Mental Capacity Act. Perhaps one of the reasons that this amendment has come forward is that this is an amendment Bill and therefore there can be a dislocation sometimes between what we are considering and the wider context.

It is already the case that steps should be taken to support people to make their own decisions. We have not brought forward the Law Commission’s recommendation to set up a formal supported decision-making scheme because that legal entitlement already exists. Wherever possible, of course, people should make decisions for themselves and be supported to do so. However, as I say, the second principle of the Mental Capacity Act provides that legal force and in the code of practice we will set out the guidance about how that should work in principle.

The noble Baroness, Lady Thornton, introduced Amendment 24, which describes the process of how someone should be deprived of their liberty. It was helpful for her to refer to the NICE guidance on this. We have already talked tonight about a written record—I think that goes some way—and the basis on which it is shared, which is also important. I will provide more detail on that. The concern about the way that this has been framed is that it is too specific to be in the Bill and the process and the terms may change over time. Although I am sympathetic to the idea that there needs to be clarity about what the appropriate process is, that is best done in the code of practice rather than in the Bill.

The noble Baroness, Lady Finlay, introduced Amendments 24A, 24B and 24C. I need to reflect further on the implication of these amendments because the way she described them was perhaps not how we had previously interpreted them. My only concern is that one of the effects might be that only responsible bodies could decide to rely on previous assessments, because she has taken care home managers out.

Amendment 25 from the noble Baronesses, Lady Barker and Lady Jolly, would require the care home manager or responsible body to have regard to any change in a person’s circumstances when seeking to rely on a previous or equivalent capacity or medical assessment. I agree with the intention of the amendment, which is to ensure that before relying on a previous or equivalent medical or capacity assessment proper consideration is given to whether it is reasonable to rely on it. The Bill allows for this already. Such an assessment can be used only if it appears to be reasonable to rely on it. As we have said, responsible bodies when reviewing such statements are obviously legally liable for making sure that the reasonableness test is carried out. Again, we will provide more detail in the code of practice about where it is reasonable to rely on an assessment.

The noble Baroness talked about the difference between condition and circumstances, or the complementary nature of the two. If circumstances change and this affects a person’s capacity or diagnosis, it would also need to be considered before relying on previous or equivalent assessments. We are reflecting at the moment on whether the Bill as drafted achieves our aim here. So this is a topic for a further conversation to make sure that we can get the appropriate balance in this area without introducing too many additional terms that might in themselves provide greater unclarity—which of course is something we are trying to avoid.

Amendment 30 deals with less restrictive arrangements. This is a principle of the Mental Capacity Act and the Bill makes no change to it. Again, we will provide more detail in the code of practice as to how the new model will work in the wider health and care system, including the Mental Capacity Act and the Care Act.

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[Baroness Finlay of Llandaff]

My Lords, unless training becomes mandatory on some level, the problem is that we will always train those who are willing to be trained while not reaching those who perhaps need to be trained more. If we could make training a little bit like fire training or manual handling, with very short bursts of realistic training, it might be much more effective. Over the years I have seen very costly, ineffective training and very low-cost extremely effective training. Often the most effective training includes a realistic assessment because assessment drives learning. I strongly support the comments made by my noble friend Lady Hollins because case-based training involving the people themselves has a huge emotional impact and therefore embeds change in the behaviours and attitudes to the person on the receiving end. On a slightly optimistic note, I am rather hoping that within Wales, we might manage to get an agreement that all doctors at every grade need at least a minimum awareness of the Mental Capacity Act and that we might then be able to build on that. I keep my fingers crossed.

The other point that we have to be careful of when we talk about training is that this is not about broadcasting information that might sound quite legalistic and frightening. One of the most important skills is listening, and listening skills have often failed in these cases, such as the ones referred to already in which the relatives were not listened to early on. They were not believed early on, the cared-for people were not adequately listened to and things spiralled down. Some of that lack of listening is just a result of poor communication skills training. I am not sure that we have to be overspecialised, but we need to raise the skills of everybody across the board. It needs to be embedded in revalidation—you might train somebody now, but in five years’ time there will be drift. The training, therefore—particularly if people are being trained to take on specific responsibilities—needs to be refreshed over time to ensure that it remains authentic.

[Baroness Thornton]

My Lords, this has been a very useful and essential discussion about training. The noble Baroness, Lady Hollins, is quite right that there needs to be a strategy. I am concerned that there does not seem to be a strategy, so can the Minister tell us what consultation there has been about how this training—even the minimal familiarisation—would be achieved? Even the Minister accepts that that is clearly not going to be acceptable.

In terms of the stakeholders, the MHA—a charity providing care, accommodation and support for older people throughout the UK—heard from a care home manager in Hereford, who said, “As home managers without a mental health nursing background, it would be impossible to expect a home manager to undertake these assessments, as with the continuing health assessments, which we are deemed unable to complete as we are not healthcare professionals”. Well, quite.

Age UK says that at present there are no fewer than six assessments for a DoLS application. In order for care home managers to be able to conduct these assessments—or indeed be party to them, if only to act as secretaries, as outlined by the noble Baroness, Lady Finlay—they are going to need the requisite training.

The LGA point out that the Government should recognise the problems caused by these additional responsibilities and the financial pressures—as mentioned by my noble friend Lord Hunt—put on care homes by the provisions in the Bill, especially when the sector is already facing significant challenges in terms of both resources and workforce recruitment and retention.

Voiceability expressed its concerns about the new requirements on care home managers. It is concerned that this transfer of responsibility sets up potential conflicts of interest, which we have already discussed. Mencap says that there has to be significant consultation with the care sector about the implications of the new requirements on care home managers.

I am just wondering how we have got to this point in the Bill without that consultation having already taken place. We need to play catch-up because this is such an important area: not only are there funding implications, but we should not be expecting people who do not have appropriate skills to be carrying these responsibilities.

Mental Capacity (Amendment) Bill [HL]

Baroness Thornton Excerpts

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

[Baroness Meacher (CB)]

My Lords, I support Amendment 45 in the name of the noble Baroness, Lady Jolly, and Amendment 47 in the name of the noble Baroness, Lady Finlay, to which I have added my name. These amendments strengthen the human rights-based duties of the approved mental capacity professional.

As it stands, the Bill weakens considerably the abilities of a person or their family or friends to exercise the convention right, under Article 5.4, of any detained person to take their case speedily to court. I think that all noble Lords understand perfectly well how this has come about. Paragraph 36 of Schedule 1 seems to indicate that an IMCA will be appointed only if the care home manager gives the relevant notification. I would be grateful if the Minister could clarify in what circumstances an independent mental capacity advocate would not be appointed under the new system.

At Second Reading, I raised my concern that the Bill was going ahead before we knew the outcome of the Mental Health Act review. The Law Commission urges the Lord Chancellor, the Lord Chief Justice and the Senior President of Tribunals to review the question of the appropriate judicial body to determine challenges to authorisations of deprivation of liberty under the Bill. The Law Commission also urges the establishment of a single legislative scheme governing non-consensual care or treatment of both physical and mental disorders where there is a lack of capacity.

At that point I have to delete chunks of my speech, having just had a meeting with Sir Simon Wessely, head of the Mental Health Act review, and Judge Mark Hedley, a former head of the Family Division, who knows all about mental capacity and everything associated with it. The Mental Health Act review will recommend that there should not be a bringing together of the Mental Health Act and this legislation. Therefore, I hereby withdraw my concern expressed at Second Reading.

As I said, following that meeting, I have deleted chunks of my speech, and I am not quite sure where I can pick it up again. Basically, they agreed with me—we agree about everything, in fact—that appeal to a court should be an absolute last resort. It goes without saying that court cases are incredibly time-consuming, stressful and expensive. It has to be seen as a failure of the system if recourse to a judge is needed. I certainly have a great deal of sympathy with the argument that, as far as humanly possible, we need to focus all the resources we can on the care of individuals, whether in the community or elsewhere.

We know that, if a court demands reports, the care of the patient has to come second to those reports being produced. This comes at a time when 10% of psychiatrists’ posts are not filled and vast numbers of all doctors’ and nurses’ posts are not filled, and it is proving more and more difficult to recruit—we will not mention the reason why. It seems to me, following discussion with Simon Wessely, that it is crucial to get the process right to minimise the need to access the courts. That is what his Mental Health Act review will concentrate on, albeit it will be a lot more liberal and professional than the current Act. It is an excellent process so that we can reduce the need for access to the courts.

[Baroness Thornton (Lab)]

My Lords, I have added my name to Amendments 31 and 48 from the noble Baroness, Lady Jolly. Apart from supporting the amendments and regarding the approved mental capacity professional as an issue of great importance in the Bill, I did so to be able to ask a few questions.

It might be simply that I do not understand, but my concern is this: how will the person who cannot object, but who needs to object, do it? The Bill states that people can automatically access the approved mental capacity professional if they object, but what happens for the person who cannot object but probably ought to? Who decides that a person’s family or those around them will be consulted to make sure that, if there is a need for an objection, it is heeded, which then puts them in the right place to access the AMCP? Those concerns have been expressed by lots of our colleagues in different ways. It is still not clear to me how that will happen. How will that person be protected under those circumstances?

[Baroness Stedman-Scott (Con)]

My Lords, I thank all noble Lords for initiating this discussion about approved mental capacity professionals and providing me with an opportunity, for the first time ever, to respond to amendments to a Bill.

[Baroness Stedman-Scott]

I thank my noble friend for that intervention. I have been hugely impressed by the commitment on all sides of the House to interrogate this Bill to make sure that it is fit for purpose and does the right job for the people we all seek to serve.

The amendments from the noble Baronesses, Lady Thornton, Lady Jolly and Lady Finlay, would have the effect of requiring that, in each and every case referred to an approved mental capacity professional, the AMCP would have to explicitly consider whether the case should be referred to the Court of Protection. We are clear that if a person wants to challenge their authorisation in the Court of Protection they have the right to do so. However, part of the reason we are creating the approved mental capacity professional role is so that cases where the person is objecting to the proposed arrangements can be considered outside having to go court, which we expect to be in line with the people’s wishes. It is always good to remind ourselves—as has been done many times during today’s business—of what we are trying to achieve and what we are trying to avoid. If we can avoid going to court, as has already been said, but serve people well, then we will have achieved something.

I am conscious that we do not want to create a situation where approved mental capacity professionals defer their responsibility to the Court of Protection and individuals have to undergo court procedures unnecessarily, particularly as we know this can be burdensome for people. In the short debate about this group of amendments, we have all agreed that we should avoid court at all costs, not only fiscally but because of the burden, stress and blockages that it puts into the system. However, I would like to reassure noble Lords that the responsible body has a responsibility to ensure that individuals who want to bring a challenge, in line with their Article 5 rights, have access to the Court of Protection, and the approved mental capacity professional would be important in identifying where this will be the case.

The amendment of the noble Baroness, Lady Barker, would have the effect of requiring the approved mental capacity professional to meet with the cared-for person unless there is agreement with consulted persons that it is not necessary or appropriate to do so. We are clear that our intention is for approved mental capacity professionals to meet with the cared-for persons in almost all cases. Exceptions would be extreme circumstances, such as if the cared-for person is in a coma or clearly expresses a wish that they do not wish to meet with the approved mental capacity professional. I am sure that noble Lords agree that in these exceptional cases it is right that the approved mental capacity professionals do not meet the person.

To reflect this, we have imposed a duty to meet the person where it appears to the approved mental capacity professionals to be appropriate and practical to do so. I understand that the intention of the amendment is to limit the circumstances in which an approved mental capacity professional does not meet with the cared-for person. However, I am conscious that there could be situations—for example, where the AMCP and all consultees bar one agree that it was not necessary or appropriate to meet the person. However, if one consultee did not agree, it would mean that one consultee would effectively have a veto and the AMCP would be required to meet the person. We will ensure that guidance regarding that rare circumstance where it is not practical and appropriate is included in the code of practice.

The amendment of the noble Baronesses, Lady Barker and Lady Hollins, and the noble Lord, Lord Hunt of Kings Heath, requires the person completing the pre-authorisation review, where this is not an approved mental capacity professional, to meet with the cared-for person regardless of whether this is appropriate or practical. We appreciate that there may be circumstances—

[Baroness Thornton]

I am not sure whether my question has been answered so I will repeat it. Does this mean it is automatic that the cared-for person will see the AMCP? Is that what the noble Baroness is saying? She has started tying me up in knots. Will it be automatic? Except, obviously, in the cases that have been mentioned, is that what will happen?

[Baroness Stedman-Scott]

Let me confirm that they will not automatically meet with the AMCP.

[Baroness Thornton]

In that case, who takes the decision?

[Baroness Stedman-Scott]

I was saving my answer to that question for the end of my speech, but as the noble Baroness is pushing me, I shall respond now. Since I have been in this House I have always been advised that when you do not know something, you fess up to it. So I have to tell the noble Baroness that I cannot answer that question right now unless someone to my left has a magic piece of paper that will get me out of jail free on this one. More seriously, I will come back to the noble Baroness because it is a very pertinent question, if that is acceptable to her.

[Baroness Thornton]

Thank you.

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[Baroness Barker]

There are two amendments in my name in this group. Amendment 44 is designed to probe an issue that is clearly worrying lots of noble Lords: that the condition that triggers an AMCP is that the person is objecting to their care in a particular place. The noble Baroness, Lady Hollins, is always very good at helping us to understand legislation from the point of view of people with learning disabilities. My background and my chief concern is with older people with dementia who are probably disproportionately likely to be overlooked by this provision because they will not necessarily be vocal.

I return to the questions raised by the noble Baroness, Lady Thornton: why would you object if you do not know what you are objecting to? What will happen if you do object? Will you receive any help? Currently, best interests assessments are required for DoLS detentions but, as I understand this, where a person does not object they do not get to see an AMCP. If they are in a care home, it is the care home staff, but in hospital and community settings the responsible body can use evidence from other assessments to make a determination for somebody. What is the evidence base for this? Do we know how many people currently object to their care and treatment? Why is that considered a sufficiently robust basis on which to make this a criterion in law? There is something deeply flawed and deeply wrong about this.

Amendment 59 may seem a bit strange on the face of it. It inserts a requirement to keep a record of refusals of authorisations. One of the things that the Select Committee of your Lordships’ House found was that the evidence base for DoLS is very sketchy. I have to make it clear that the Select Committee’s report was put together and came out just around the time of the Cheshire West ruling. In the light of that ruling, the number of applications shot up. We have never had a robust evidence base for the way DoLS work. I agree with the noble Baroness, Lady Hollins, that this is not going to close the Bournewood gap, but we should at least try to cover up some of the deficiencies there have been in the past. Therefore, trying to get together some basic stats and information, including how many times things like DoLS have been refused, is important.

I know, as will other noble Lords, that among professionals, or rather among stakeholders, there was a big discussion prior to Cheshire West about whether having lots of DoLS applications was an indication that in fact you were a good provider or whether that would somehow be indicated by the fact that you had none. That is not the right calculation; you can argue it either way.

We still need to get to the bottom of the transparency of the decision-making around this. That was my reason for tabling what might seem to be a rather strange amendment.

[Baroness Thornton]

My Lords—

[Baroness Finlay of Llandaff]

My Lords—

[Baroness Thornton]

You go ahead of me.

[Baroness Finlay of Llandaff]

I beg your pardon; I have an amendment in this group as well. Oh dear, I seem to have spattered them in every group.

I have a real concern that triggering a review that is based on whether or not the person is thought to be objecting is far too narrow, and that anyone who has concerns about that person should be able to trigger a review independently—whether that is family, friends or somebody working in the place where the cared-for person is supposed to be being cared for.

I have an interest, or at least an experience, to declare: some years ago I was asked to help the police look at a care home where they had serious and justified concerns. The alert had come from somebody working at an extremely junior grade within the care home, not from anybody senior or from a professional. Following that, I was asked to review the case notes in detail. The people concerned all had severely impaired capacity and, often, an inability to express themselves—but, by meticulously looking at the case notes, one could see trends, and when I mapped them against the staff off-duty rota the trends became clearer.

I am very concerned that, if we leave this just as it is written, we will not allow the very people who have contact, possibly on a day-to-day basis, to put up a red flag about what may be happening in one person’s life. It may be that nine out of 10 people in an institution are very happy, but if one of them is not and one member of staff has got to know them and sees subtle changes in their behaviour, that member of staff must be empowered, with the cover of anonymity, to trigger an independent review, because that may be the only way to protect the cared-for person.

I put in my amendment that a review should be triggered if,

“the rationale … is based on the risk to others”.

The concept of “risk to others” is quite difficult to justify being in this Bill rather than in the Mental Health Act as the sole rationale for using the Bill, so I think that it becomes an exceptional circumstance that warrants that type of review. Similarly, if the restrictions are on contact with named persons, I worry that there could be a bias from the staff towards the named person. When somebody is very upset, they may appear to be an aggressive or angry visiting relative and may be a bit more difficult to handle—but actually it may be that that is simply the way that they are expressing their anxiety and their emotions towards the person who is now deteriorating and want to do their best for them. I worry about excluding a close relative without great justification; it should not be undertaken lightly.

--- Later in debate ---

[Baroness Thornton]

That is a very good point. I will speak to my Amendment 44A, which is in this group. My amendment provides for a pre-authorisation review to be carried out by an approved mental capacity professional if the cared-for person is in an independent hospital and receiving mental health assessment or treatment. Where a person is in an independent hospital for the purposes of assessment and treatment for mental disorder, they may need to come under the liberty protection safeguards, and there must be an independent assessment by an AMCP.

I am concerned about the lack of independent assessment and oversight to guard against conflicts of interest in these settings. It is an issue that I know that organisations supporting people with learning disabilities and autism—Mencap and others—are also very concerned about. It is recognised that too many people with a learning disability and autism are stuck in assessment and treatment units and other in-patient settings due to the lack of the right support in the community.

Following the learning disability abuse scandal at Winterbourne View hospital, the Government and NHS England promised to tackle this issue and reduce the number of people with a learning disability and autism in these settings. Through their Transforming Care programme, they have committed to developing the right community support to reduce the number of in-patient beds. However, to date there has been little reduction in the number of people in these settings. Often, high levels of restrictive practices are used in these settings. It is recognised that children, young people and adults with a learning disability and/or autism in in-patient settings are at risk of overmedication, restraint and being kept in solitary confinement, as we have seen in the press in the past couple of days.

The average length of stay for assessment and treatment is nearly five and a half years. The Learning Disability Census 2015 stated that 72% of people in in-patient units had received antipsychotic medication, but only 29% were recorded as having a psychotic disorder; 56% had experienced self-harm, an accident, physical assault, hands-on restraint or being kept in seclusion. A recent shocking BBC “File on Four” programme revealed highly restrictive practices in these settings. It had obtained information that there had been a large increase in the use of restrictive practices between 2016 and 2017. This is of great concern.

According to the latest NHS digital data, 2,375 people with a learning disability or autism are in in-patient settings. Of those, 1,045 are in independent hospitals. The data show that currently, most are detained under the Mental Health Act, but of course there are people who are under DoLS in these settings, and who will be under the liberty protection safeguards in these settings in future. It is vital that there are robust independent assessments for people in these settings who may fall under the liberty protection safeguards. It is therefore essential that there is a requirement for an AMCP to undertake an independent assessment in these situations.

Can the Minister clarify: under the liberty protection safeguards, who will be responsible for signing off the LPS authorisations for people in independent mental health hospitals?

[Baroness Stedman-Scott]

My Lords, many exam questions are coming out this evening. Let us hope we can answer them to your Lordships’ satisfaction.

[Baroness Thornton]

We want to ensure that the noble Baroness gets the full context of what it is like dealing with amendments in Committee.

[Baroness Stedman-Scott]

I appreciate that very much; I am touched and can confirm that you have passed that exam with flying colours.

This is clearly another important element of the Bill, and I thank everyone for their contributions. I pick up the point about independence in the system, and have always been of the view that when you have situations like this, some independence is greatly helpful. Without wishing to make you laugh or belittle what we are trying to do, I say that I have just spent some time in the States and was subject to the awful rigours of President Trump and the Kavanaugh situation. I can tell you there was no independence there whatsoever. So I am absolutely at one with all noble Lords about independence when making judgments and trying to help people improve their lives.

I think the noble Baroness, Lady Hollins, made a terribly important point. Where somebody is having something explained to them and does not feel comfortable objecting, or feels the environment is not right—I doubt there is one of us who has not been in that position at one time—it is horrible. We have to make sure the environment is correct and healthy for people to do so.

I think the points the noble Baroness, Lady Barker, made, in referring back to the evening exam question asked by the noble Baroness, Lady Thornton—how do people know?—have to be answered. I take on board the point raised and think we must get to the bottom of that. However, I can tell you that approximately 30% of people do object to their DoLS review, if that is helpful. Also, the noble Baroness, Lady Barker, raised an important point about evidence base. In a job once, someone wanted me to get the evidence for what we thought we were doing, and I was terribly nervous about it because I thought I would be out of a job. Actually, when we got an independent group in to look at it, we were just blown away by the evidence, which you could not argue with. I know it is costly to gather evidence, and I have no idea if it is practical or realistic here, but I have no doubt the case will be stronger one way or the other for having some evidence. The noble Baroness, Lady Finlay, made numerous excellent points today, but the independence and the review is what is resonating in my mind. I am glad to confirm to the noble Baroness, Lady Barker, that harm to others is included.

Health: Contraceptive Services

Baroness Thornton Excerpts

Thursday 11th October 2018 Lords Chamber

Asked by

[Baroness Thornton]

To ask Her Majesty’s Government what action they intend to take to protect women’s sexual and reproductive health services following the findings of the Advisory Group on Contraception, published in September, that nearly 50 per cent of local authorities have reduced the level of contraceptive services delivered since 2015.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O’Shaughnessy) (Con)]

My Lords, the Government have mandated local authorities in England to commission comprehensive open-access sexual health services, including the provision of free contraception. Contraception is also widely available free of charge through general practice. Working with Public Health England we are considering ways to promote increased access to the full range of contraception.

[Baroness Thornton (Lab)]

I thank the Minister for his Answer, but it is not good enough to place the responsibility on local councils when there has been a £600 million cut by Public Health England overall over the past few years. Local authority budgets for sexual health services have been reduced by £30 million in the past two years. This is a false economy. Every pound spent on contraception saves £9 in averted costs as well as huge personal and family costs. We are seeing some of the consequences already. According to the Terrence Higgins Trust there has been a 20% increase in the diagnosis of syphilis and gonorrhoea. When will the Government replace the lost funding now that we have learned that austerity is over and make sexual health services a public health priority again?

[Lord O’Shaughnessy]

I concur with the noble Baroness about the importance and benefits of contraception. It is a success of sexual health services that the use of long-acting reversible contraceptives has risen over the past 10 years. She is right that there have been pressures on public health budgets which have affected services, but it is important to note that many outcomes are improving. The annual number of sexually transmitted infections is stable, and the number of teenage pregnancies is down. In fact, it has fallen by 45% since 2010 to its lowest recorded level. I take her point about the importance of these services and that they are under pressure; nevertheless, they are performing admirably.

NHS: Staffing

Baroness Thornton Excerpts

Wednesday 10th October 2018 Lords Chamber

[Lord O'Shaughnessy]

I am aware of my noble friend’s long-standing interest in this area. It is an issue on which we disagree. I happen to think that the changes to the funding of higher education introduced by a Labour Government and continued by the coalition Government provide a fair distribution of benefit and cost to both the taxpayer and those who benefit from higher education.

[Baroness Thornton (Lab)]

The Minister has reassured the House on several occasions that the NHS will survive Brexit and the staffing will not be affected. However, when the Home Office announced plans in June this year to temporarily exclude doctors and nurses from the annual tier 2 visa gap, it meant that 1,500 applications were turned down. That does not seem to be sending the right message to those doctors and nurses from the European Union who are already here. We know that the BMA found that 77% of EEA doctors stated they would consider leaving the United Kingdom if the Brexit agreement did not suit their purposes—and that is actually about making them feel welcome here.

[Lord O'Shaughnessy]

I completely agree with the noble Baroness that we want to make them feel welcome. I use this opportunity to state again how much those staff are valued and how much we want them to stay here. What we are doing about it practically is making sure that we communicate with employers and provide the EU settlement scheme—indeed, health and social care workers will take part in the pilot, which will happen later this year. We are sending that message and providing that reassurance. I understand that there is anxiety out there, which is why we want to reassure people, but I am reassured by the fact that there are more people from the EU working in the NHS and CCGs today than there were two years ago.

NHS: Dangerous Waste and Body Parts Disposal

Baroness Thornton Excerpts

Wednesday 10th October 2018 Lords Chamber

[Baroness Thornton (Lab)]

I thank the Minister for that Answer, but at the heart of this rather horrible matter is the issue of contracting out our important NHS services, and a lack of accountability. Does the Minister agree that contracting out and subcontracting any NHS function does not absolve the commissioner of responsibility and the need to monitor and seek assurance that the contract is being delivered according to the contract, which presumably in this case involved proper and legal disposal. So where was the monitoring and the assurance to the commissioner that allowed that to happen? It seems to have failed comprehensively. Does that not suggest that this service, which is so crucial, should be delivered in-house? What we see here is a massive market failure, and indeed a massive regulatory failure.

Secondly, my right honourable friend Yvette Cooper asked in the Commons whether the Minister accepted that,

“it is a basic principle that, when dealing with any kind of public health or environmental health risk or incident, proper, full, factual information is provided to the public and the community”,—[Official Report, Commons, 9/10/18; col. 37.]

and at the earliest opportunity to Parliament. You do not hide behind a contractual negotiation, so will the Minister tell me where the line lies between the need to inform Parliament of a public health incident and the need to protect commercial confidentiality?

[Lord O'Shaughnessy]

I can say to the noble Baroness that the NHS contracts out very large numbers of services of all kinds, and indeed has contracted out this kind of service for around 30 years. What we have here is not a market failure but a company that has broken the law, and which is therefore being pursued by the regulatory system that we have in place. That is about making sure that the Environment Agency, in this case—because it is about environmental health—is monitoring, issuing notices and raising issues as they come up, which is precisely what it has done here. But I agree with the noble Baroness that certainly there are lessons to be learned about monitoring, and we are absolutely looking at that as a consequence of this incident.

However, it is very important to state two points. No risk to public health has been established, because of the secure circumstances under which the waste—albeit way too much of it—was being kept, and there was no interruption to the provision of services, so there was no risk to patients or to hospital operations. On providing information at the earliest opportunity, we have done exactly that. As I said, no public health risk has been established, and we came to Parliament on the first day it came back, once the termination notice had been in place with a part suspension.

In Vitro Fertilisation: 40th Anniversary

Baroness Thornton Excerpts

Thursday 13th September 2018 Lords Chamber

[Baroness Thornton (Lab)]

My Lords, I agree with the noble Baroness, Lady Jolly, that this has been an excellent debate, and I thank the noble Baroness, Lady Deech, for bringing this celebration to the Floor of the House.

I was a small bit player in bringing the statutory instruments to this House when I was a health Minister and working with my noble friend Lord Darzi. Something dramatic happened during the Second Reading of the Human Fertilisation and Embryology Act 2008. One of our fellow Members had a heart attack in the Chamber, which delayed the passage of the Bill. I am pleased to say that he made a full recovery.

I have been reading that debate in Hansard, and it brought to mind some noble Lords who are no longer with us. Earl Ferrers had a lot to say about male inheritance and other matters. It reminded me that for a short time, I became an expert in what was known as admix—the noble and learned Lord, Lord Mackay of Clashfern, will recall those debates.

The point is that we debated them in good spirit with an enormous amount of authority and good will and, in the end, came to conclusions which not only protected and enhanced the rights of people to have children who had not been able to do so before but protected embryonic research for the benefit of the whole of our world.

That is why the UK has been a world leader in embryology and HIV treatment. That is why we have seen revolutionary successes over the years, which date back to July 1978: to Louise Brown, the first baby born by this method. Every person I told about this debate immediately knew her name—she is a balanced woman who has led a balanced and normal life. How different her life could have been had she not been the first person created in that way. I pay tribute to her for the life that she has led and the way that she has handled what could have been very difficult.

All of these breakthroughs have brought immense joy to families, but there are always improvements to be made. Many of those have been mentioned today. I pay tribute to the Human Fertilisation and Embryology Authority for the work that it has done under successive chairs, who have been distinguished and each brought tremendous work and talent to their role. I was one of those who fought for its continued existence when, in 2010, we had a Government who proposed a bonfire of the quangos. The Human Fertilisation and Embryology Authority was included as possible kindling for that bonfire. I am very glad to say that the Government of the day changed their mind.

I miss my noble friend Lord Winston from the debate, as I am sure everyone in the House does. In recent years, he has brought some useful commentary to your Lordships’ House about the issues that now need to be addressed, and has taken part in debates about mitochondrial donation techniques and gene editing, mentioned by the noble Earl, Lord Selborne.

I shall not take 15 minutes, because I think that most of the issues that needed to be raised in this debate have been raised eloquently by those who are very expert. The Government need now to address some of the issues and this is a good moment to raise them.

It is 10 years since the last major overhaul of the UK fertility and embryo law and it is time that we explore the scientific, medical and social developments that were not predicted when the current legislation was drafted, as well as the developments that are under way but have not been as anticipated. Egg freezing and its limit needs to be addressed. The noble Baroness, Lady Manzoor, was on the receiving end of a Question on this matter—in July, I think—when the noble Baroness, Lady Deech, raised it. I raise the issue again with the Minister: if the evidence is there that women’s eggs can be preserved for over 10 years without becoming damaged, it seems to me that there is no valid reason for this shortness of time. Otherwise, it can mean that women who have had cancer and recovered do not have enough time, because their eggs are not preserved. We know that this sort of dreadful thing happens.

It is also time that the Government look at the regulation of private clinics. We know that it can be very expensive for those who wish to go down that route. Private clinics can charge very much more than the average £3,000 to £5,000. There are records of patients paying over £20,000 for treatment, and these clinics can sometimes add on treatments that lack medical evidence as to whether they are really needed. My noble friend Lord Winston has raised this in the House and I am raising it again, as there needs to be a review of the regulation of private clinics. The Government also need to look at overprescription. The issues raised by women taking immunosuppressant drugs should be properly addressed. There was, again, a Question in the House not so long ago on whether the Government would review this issue.

Finally, there is also the issue of accessibility to IVF treatment. I should have declared an interest at the beginning: I am a lay member of a clinical commissioning group. The issue of the lack of availability of three cycles of IVF, in line with the NICE guidelines—or of any cycles at all—needs to be addressed. It is an example of a postcode lottery in the UK and it means that, if you live in the wrong place, either you have to be rich enough to afford IVF treatment at a clinic, as the noble Baroness, Lady Boycott, said, or the prospect of having a child disappears from your life with all the tragedy that that involves.

So, we say happy birthday to Louise Joy Brown and happy birthday to our embryology and IVF treatment system in the UK. It of course needs to be reviewed, but I think that the last 40 years shows that we are reaching middle age in pretty good shape.

Mental Health Units (Use of Force) Bill

Baroness Thornton Excerpts

2nd reading (Hansard): House of Lords
Friday 7th September 2018 Lords Chamber

[Baroness Thornton (Lab)]

My Lords, I congratulate my noble friend on her excellent introduction to the Bill and on this short but very expert debate.

I agree with my honourable friend in the Commons, Justin Madders, when he indicated the Opposition’s support for the Bill:

“I thank my hon. Friend the Member for Croydon North (Mr Reed) for introducing the Bill; he certainly made a powerful case for it. Everything we have heard has made it clear why the Bill is necessary. … Restraint is used too often and disproportionately in certain sections of society. This cannot be allowed to continue. When she responds, I hope the Minister will support the Bill and allow it to be sent to Committee”.—[Official Report, Commons, 3/11/17; cols. 1107-09.]


As we know, the Government are to be congratulated on their willingness to support the Bill.

As noble Lords have said, the purpose of the Bill is to improve,

“the oversight and management of the appropriate use of force in relation to people in mental health units”.

It aims to do this in various ways, including through extensive training and requiring police officers to wear body cameras while in mental health units.

The case that has been referred to, of Seni Lewis dying due to improper force, is not isolated or a rare mishap. The current reality is that there is a severe lack of trained workers, leaving it open for patients in these health units to be abused and mistreated. The Crisis Prevention Institute found that in 2016-17—other noble Lords have referred to this—3,652 patients were injured while being restrained during NHS treatment. This is widely recognised as unacceptable, as shown by the unanimous support the Bill gained as it went through the Commons.

I am going to refer particularly to women who die after being restrained. In July, the organisation that looks at the issues faced by women facing multiple deprivation and abuse, Agenda, published research which said that 32 women died after experiencing restraint over a five-year period. It continued:

“The data, on patients detained under the Mental Health Act, suggests women were more likely to have restraint-related deaths than men between 2012/13 and 2016/17. Younger women made up a large number of the restraint-related deaths – 13 were aged 30 and under, compared to 4 men in that age range. More than a fifth of women who died were from Black, Asian and Minority Ethnic backgrounds, according to the figures, which were originally gathered by the Care Quality Commission”.


The director of Agenda, Katharine Sacks-Jones, said at the time:

“It is a national scandal that so many women are dying in our hospitals after being subjected to restraint. Mental health units are meant to be caring, therapeutic environments for women and girls feeling at their most vulnerable, not places where their lives”,


should be,

“put at risk. This bill is a real opportunity to reduce the use of this potentially lethal practice”.

I hope that we will see it go through your Lordships’ House.

However, that issue of the gender-based and other equality-based issues is one that I would like the Minister to address because of those factors. The idea that a woman who may be suffering from mental health problems and has been abused should then be subject to restraint in a mental health unit is really unthinkable and cruel. The guidance that flows from this legislation really has to address those issues.

A whole series of amendments were tabled in the Commons, which we will probably not be discussing in your Lordships’ House because we want to get the Bill on the statute book and do not want to risk it. However, those amendments tabled to the Bill in the Commons raised some very important points. I hope that the Minister will address the issues they raised, many of which have been raised by noble Lords already. They include: that training for staff should include training on trauma-informed care to understand how trauma exposure can affect patients’ neurological, biological, psychological and social development; to ensure that staff are required to have training on a patient’s right to advocacy, so as to improve the legal rights of the patient and capability of the staff; to ensure that the training for staff includes training on safeguarding procedures, to increase the protections for patients and the knowledge and capabilities of staff; and to ensure that training on the use of force complies with the quality standards so that the Secretary of State can delegate the training standards to a different agency, for example Health Education England.

The noble Baroness has already mentioned the importance of recording and accountability. I want to raise the use of the word “negligible”. It seems to me that it provides a loophole and could decrease transparency. I hope the Minister will be able to address that issue because I would hate us to find ourselves back here in three or four years’ time discussing this issue again because we have managed to put on to the statute book something that creates a loophole which is then used to not solve this problem.

I agree with noble Lords that the Secretary of State coming to Parliament with the statistics about mental health units and the use of force is very important. Is the Minister confident that, if we put this legislation on the statute book, the legislation and the guidance will be sufficiently robust to achieve what my honourable friend Steve Reed wanted to achieve when he set off on this journey, which was to not allow these tragedies to happen again?

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O’Shaughnessy) (Con)]

My Lords, I shall begin by thanking three sets of people for getting us this far. The first is the noble Baroness, Lady Massey, whom I thank for introducing this Bill and for the opportunity to respond and contribute to the Second Reading. The second is Steve Reed, the MP for Croydon North, who, as all noble Lords have said, has done much of the work to get the Bill to where it is today. We know how difficult the journey of a Private Member’s Bill is, but that it has got this far in this good shape and has this broad support shows not just how important this issue is, but what a fantastic job he has done. I congratulate him. The third set of people are the parents and family of Olaseni Lewis. They have been through a heartbreaking experience, but they have nevertheless fought and campaigned tirelessly for justice for their son. I join other Members of the House in expressing my admiration for them, their resolve and the work they have done to ensure that other families do not to suffer in the way they and their son sadly had to.

This is an emotive subject. It touches the lives of people when they are at their most vulnerable, but at the same time we need to be conscious of the fact that patients must have trust in all NHS services in whatever setting. In that context, the topic of restrictive interventions is always difficult. They are never without risk. Going through an intervention and, I believe, delivering one can be a frightening and traumatic experience for patients and staff at a time when those patients are unwell. The Government are clear that restrictive interventions should only be used as a last resort when all attempts to de-escalate a situation have been employed.

Noble Lords are aware that in April 2014 the Government launched the positive and safe programme, which aimed to reduce the use of these kinds of restrictive interventions in the health and social care sector. That included the non-statutory guidance, Positive and Proactive Care: Reducing the Need for Restrictive Interventions. It was intended to inform the Care Quality Commission’s programme of monitoring and inspections.

What has been identified not just in this debate but during the passage of the Bill in the other place and by my honourable friend the Minister is that the existing guidance is not having the impact the Government expected and that much more needs to be done. For that reason as well as others, the Government are in full support of this Bill.

The noble Baroness, Lady Massey, was right in saying that this Bill is a good example of cross-party collaboration. A number of changes have been incorporated since it was first introduced to respond to multiple concerns, many of which have been raised this afternoon and by other parliamentarians, campaigners and staff. I pay tribute to all those who have contributed to the improvement of the legislation in the other place.

I shall deal quickly with some of the amendments that were made in the other place because they demonstrate how the Bill has been improved and that it is in a good place now. First, we have included “isolation” and “segregation” in the key definitions of use of force to address stakeholder concerns that these commonly used techniques would not be recorded and reported on nationally if they were not included in the Bill. We clarified the role of the responsible person in Clause 2 so that a board-level or equivalent person has responsibility for reducing restrictive interventions.

We have added to Clause 3 so that the policy on the use of force must set out what steps will be taken to reduce the use of force in the mental health unit, something that has been mentioned many times today. We strengthened Clause 4 in relation to sharing information with the patient about their rights, so that the responsible person has to take whatever steps are reasonably practicable to ensure not only that a patient is aware of the information about their rights but that they understand it. Critically, on the point that was raised by the noble Baroness, Lady Tyler, it will ensure that every patient and their family members or carers understand what the patient’s rights are in relation to the use of force while they are in a mental health unit, a really important improvement.

In Clause 5 we have expanded the topics that must be covered in training courses to recognise the impact that trauma may have on a patient’s physical and mental health and, as the noble Baroness, Lady Thornton, said, what is known as trauma-informed care. I will return to the issue of training but I will say at this point that we have also now included a requirement for staff to receive refresher training as appropriate, so it is not just one-off training.

We have expanded the list of information that must be recorded in Clause 6 to include a description of how force was used and the outcome of that use of force to increase transparency and accountability, while also amending the time for which records must be kept so that it is proportionate and in line with data protection law.

In Clause 7 we have ensured that the responsibility for publishing annual statistics sits with the Secretary of State in order to enable NHS Digital to collect national data and produce and publish those statistics. Following this debate today, in response to the question from the noble Baroness, Lady Tyler, I will clarify the timing of the publication of the statistics so that it can be done in a way that shines the greatest light on that information. I shall write to her and all noble Lords with more details on that.

In Clause 8 we have further committed to an annual review of published reports by coroners under paragraph 7 of Schedule 5 to the Coroners and Justice Act 2009—more commonly known as regulation 28 reports—relating to the death of a patient as a result of the use of force, and any other findings made during that year. This will enable lessons to be learned across the system. This was one of the points made by the noble Lord, Lord Harris, and again, I will respond to that in a bit more detail in a moment.

Clause 9 is the result of much discussion about investigations, to ensure that mental health units have regard to any guidance relating to investigating deaths or serious injuries that is published by a range of organisations including the CQC, NHS Improvement and NHS England, as has been referenced. This puts the NHS Serious Incident Framework on a legal footing and gives strength to the requirement to carry out an independent investigation into an unexpected death, including the death of a patient following the use of force.

Finally on the improvements made in the other place, the clause on police body cameras was amended to ensure that the use of body-worn video is proportionate, legitimate, necessary and in line with the College of Policing guidance on its use. It was also amended to clarify that failure to bring or use body-worn video when attending an incident in a mental health unit is not in itself a criminal offence.

I thank noble Lords for indulging me in mentioning those points. I wanted to demonstrate the improvements that have been made in response to stakeholders from the charitable and voluntary sector. By virtue of those improvements, we can be confident that the Bill is in very good shape and, in response to the question from the noble Baroness, Lady Thornton, has the best possible chance of delivering the outcomes we want. We want to ensure that the Bill goes through in its current shape but, like my colleague Jackie Doyle-Price, I will be more than happy to meet any noble Lords who want further reassurance on any of the questions they have asked, although I shall try to deal with some of them as well as I can now.

I turn to some of the specific points and questions raised by the noble Baroness, Lady Massey, and other noble Lords. First, on the timing of the statutory guidance, calls to see drafts of it and the timetable for its publication, Jackie Doyle-Price in the other place accepted the need to move quickly and said that publication within 12 months of the Bill being passed would be appropriate in the context. I believe that this is reasonable, given the complexity of the guidance that we will need to consider. On the critical question of how it will be drawn up, we plan to establish and consult with an expert reference group, including experts in the field of restrictive interventions and people with lived experience, as well as carrying out a public consultation on the guidance before it is published. I reassure noble Lords that we will work closely with key stakeholders to take account of their contributions, and the discussions on the Bill in both Houses, in developing the guidance. I hope all noble Lords who have taken part in this debate will have the opportunity to contribute to the development of that guidance.

The issue of diversity and the disproportionate use of force for black and minority-ethnic groups was raised by the noble Lord, Lord Adebowale. Annual figures from the mental health services dataset showed that in 2017 the number of people subject to restrictive interventions was 9,771. Collectively, these people experienced more than 71,000 incidents of restrictive interventions. They also showed that they were disproportionately affecting patients from the BAME community, as well as women and children, as was mentioned by the noble Baronesses, Lady Thornton and Lady Tyler. This is clearly unacceptable, but we do not yet have a consistent and rich enough dataset to understand exactly where the problems in the disproportionate use of force take place, when they take place, in what settings, and so on. It is precisely for that reason that we want that rich dataset to inform practice and action, and to respond accordingly. I should be pleased to follow up our debate today with noble Lords, once data is available, to think about what action could be taken to address the discrepancies in performance.

The noble Baronesses, Lady Tyler and Lady Massey, asked about children. I can confirm that the Bill applies to all patients in a mental health unit, including children, for the purposes of treatment for a mental disorder. The children and young people who are being looked after in those mental health units are, of course, among the most vulnerable patients, and I absolutely acknowledge that staff will require a different skill set when looking after them. I will come to the issue of staff training in a moment, but Clause 5 sets out the requirements for staff training, including involving patients in their care, and this will be a different conversation for children and young people than for an adult. I reassure noble Lords that the statutory guidance that we produce will have specific examples and principles of good practice for how to carry out those conversations with young people and children, as well as with adults.

I should like to address some questions raised about the use of force. Although it has not been raised in this debate, it was asked in the other place whether the words “threat to use force” and “coercion” should be included. The reason for resisting that is that we believe that they can be useful terms when used properly as part of de-escalation techniques. As the noble Baroness, Lady Tyler, pointed out, those techniques are incredibly important in reducing the use of force wherever possible.

Nevertheless, we need to ensure that there is proper oversight to ensure that threats are not used improperly. That is part of the policy that we will expect the responsible persons to put in place to ensure proper responsibility, and proper accountability within the organisation for the reduction of the use of force and not merely substituting for it by other means.

Of course, as noble Lords have pointed out, staff must be properly trained. On those occasions where restrictive interventions are needed, we must feel confident that mental health unit staff have the techniques at their hands to use properly. In response to the question asked by the noble Baroness, Lady Massey, and other noble Lords, I say that Clause 5 sets out as a minimum the list of training topics which must be covered. The list in the Bill is not exhaustive, but covers the essential topic areas key to ensuring that, where necessary, force is used in a safe way using the least restrictive force. I mentioned that that will include ensuring that staff receive refresher training at regular intervals to ensure that they are up-to-date with the latest techniques and new approaches.

While we are on the topic of force, I shall address the question asked by the noble Baroness, Lady Thornton, about the use of the term “negligible”. As I have said, Clause 6 imposes a duty to keep a record of any use of force on the patient by staff who work in that unit. It sets out what information should be recorded and how long those records should be kept.

The clause also states that the duty to record does not apply to the use of negligible use of force. This is because, in consultation with our health partners, it was felt that staff should not be burdened with the need to record lower-level therapeutic activities, such as the use of a lap belt when moving someone in a wheelchair, or guiding someone by the arm down a corridor or through a doorway. These are activities that happen many times every day and, if we did not have this exception, staff would have to record such events as a use of force. This would significantly increase the time spent recording which would take staff away from caring for patients.

[Baroness Thornton]

Maybe that is the wrong word, then. Maybe the Bill should say “therapeutic” or something which does not allow a loophole which says: “Oh well, that slap was only negligible”. That might be the wrong word to use.

[Lord O'Shaughnessy]

The noble Baroness makes a good point, which is relevant to the point made by the Delegated Powers and Regulatory Reform Committee when it reported on the Bill, which I will use this opportunity to address. This was about our proposal that definitions should be within statutory guidance. This determines the appropriate mechanism for making the definition, to ensure that the kind of problems pointed out by the noble Baroness do not arise. The committee noted that the guidance under Clause 6(3) will determine whether a use of force is negligible, and thus affect the legal obligations of responsible persons in mental health units. The committee’s view is that this should be set out in regulations, in order to provide an appropriate level of parliamentary scrutiny. I have replied to the committee on this issue this morning and will share my letter with noble Lords.

We considered whether the meaning of a “negligible” use of force could be set out in regulations or, indeed, on the face of the Bill. However, the range of techniques that may be used for physical interventions alone is many and varied, from the most serious, such as prone restraint, to something as simple as guiding a patient by the elbow down a corridor or through a doorway. Furthermore, what is negligible will generally be a matter of degree rather than kind. It was concluded that the meaning would be more effectively illustrated through example case studies in guidance, which would also allow for more rapid revision to take account of changes in practice. The decision to require “negligible” to be determined in accordance with the guidance was taken to ensure consistency of approach to recording uses of force across the sector. Because the information recorded under Clause 6 will be used for the preparation of national statistics about the use of force under Clause 7, if responsible persons are taking a different approach to recording information—a current problem—that will affect the interpretation and value of the statistics.

The Government accept the committee’s concerns about the sensitive nature of the subject. This is why the Bill imposes constraints on the issue of guidance, one of which is to require the Secretary of State to consult any person he or she considers appropriate. In practice, that will mean consulting experts in the field of restrictive interventions and those with lived experience whom the Government consider appropriate for this type of guidance. It is not usually the case that we go against the advice of the committee, but in this instance we felt that the nuance required around the definitions of “negligible”, combined with the strength of force that is needed to provide consistency for statistics, meant that this particular definition within a form of statutory guidance was the appropriate way forward. I hope that noble Lords will accept that; if further discussion is warranted, I would be happy to follow it up.

My final point is on the issue of deaths of patients, which was at the heart of the questions asked by the noble Lord, Lord Harris. There was a lot of debate on Clause 9 in the other place and the clause was revised in Committee, but concerns remained about the timeliness, quality and independence of the investigations that would be made whenever a patient dies following the use of force. As Clause 9 is drafted, if a patient dies or suffers a serious injury in a mental health unit, the responsible person must have regard to any guidance relating to the investigation of deaths or serious injuries published by a list of organisations which are responsible for regulating and monitoring the NHS, such as the CQC. As I said, this means that the NHS serious incident framework is put on a statutory footing. The noble Lord, Lord Harris, gave some examples of how this would work in practice and talked about level 3 investigations. However, prior to that there is a legal duty, under the Mental Health Act, to report the death of a patient to the CQC. After that, an independent investigation should always be considered following the death of a patient in those circumstances.

As the noble Lord pointed out, level 3 investigations under the framework are those that will probably be most suited to these kinds of incidents, where the integrity of an internal investigation is likely to be challenged or where it will be difficult for an organisation to conduct such an investigation internally in an objective manner. I want to be clear that no one involved in the investigation process should be involved in the direct care of the patients affected, nor should they work directly with those involved in the delivery of that care. Following such an investigation, there would of course be an inquest, including a legal duty to report the death to the coroner, who has a duty to investigate violent or unexpected deaths. I hope that gives the noble Lord some reassurance about the objectivity and independence of the investigatory framework that would follow such a death. I am more than happy to discuss that further with him, and to make sure that the point he made is properly reflected: that there is an opportunity not just to investigate individual deaths but to look for thematic issues at a higher level—of the kind that he outlined and indeed used to be responsible for carrying out and which the IPCC used to carry out—which may be suitable for the new health services investigation board that we are introducing. That is something that I would like to discuss further with him.

The noble Lord also briefly asked about support for families. Legal aid is, I believe, the most appropriate way for that support to be offered. The Ministry of Justice has considered this in response to the Dame Elish Angiolini report and will also consider deaths in these settings on the same basis as deaths in prisons and police custody. Again, I hope that provides some reassurance, but if he wants to discuss that further I would be more than pleased to.

I hope that I have addressed all issues and questions raised in the debate today. I just finish by saying how important the Government consider this legislation to be and how much we support the noble Baroness in bringing it forward. Noble Lords have indicated that they do not intend to amend the Bill, and of course we are all conscious of time, but I am more than happy to speak to any noble Lords about remaining questions to make sure that we can put their minds at ease, provide the necessary reassurance and move ahead as quickly as possible.

NHS: Healthcare Data

Baroness Thornton Excerpts

Thursday 6th September 2018 Lords Chamber

[Baroness Thornton (Lab)]

My Lords, first, I need to declare an interest as a member of a clinical commissioning group, which also happens to cover the Royal Free.

I congratulate the noble Lord, Lord Freyberg, on the timeliness of this debate. I just wonder whether the Secretary of State chose this date to make his announcement about investment in NHS data and technology, as it allows the Minister here to tell us about the NHS’s plans. There is a nice congruency about that.

[Noble Lords]

Oh!

[Baroness Thornton]

It is all for the Minister’s benefit. I am grateful to the noble Lord for introducing this debate. I completely agree about its importance and urgency and about the action that needs to be taken with regard to NHS data. I congratulate all noble Lords who have spoken. It is a great example of the House of Lords’ consideration of a matter of national importance.

I particularly congratulate the noble Lord, Lord Bethell, on his maiden speech. With his deep political and historical background, I look forward to—I am trying to find the right word to describe his inheritance—some contraryism. That is one word that might be used, and I look forward to seeing the effect that it might have on his own Benches and indeed on the House. I welcome him to his place.

My noble friend Lord Hunt eloquently outlined the dilemma and conundrum that we face in the use of data. The noble Lord, Lord Kakkar, gave us a brilliant illustration of the usage and benefits of NHS data to be found, in his case, at the coalface of patient care and the research agenda. My noble friend Lord Mitchell —I call the noble Lord “my noble friend”—was quite correct about the need to maximise its value to the NHS and to patients, the point about maximising being very important. My noble friend Lord Stone, as usual, gave us practical examples and applications.

The noble Lord, Lord Macpherson, brought to mind a recent sad experience that I had involving a relative. Her records were not available to the paramedics in the ambulance that picked her up, so “Do not resuscitate” did not flash up on the screen, with really sad consequences. My response was to ask whether you have to tattoo “Do not resuscitate” across your forehead to make sure that, when the time comes, the records are available to whoever needs them at that point. That is a very good example of the need to get this issue right.

I thank all the organisations, as well as the Library, which sent us briefings and which helped greatly with our understanding and appreciation of the importance of this issue. I agree with the noble Lord, Lord Freyberg, about the necessity of a national strategy, and I found his speech both profound and very pointed. I think he is kind when he says that the Government are not quite asleep at the wheel. I am not quite so optimistic and I want very briefly to look at the politics of this.

I fear that the antipathy that some members of the party opposite have towards public policy-led national strategies and the conviction among some of them that NHS fragmentation was a good thing and that the private sector inroads into it are having a significant impact are potentially not a good combination in this context. I say that because I absolutely do not want NHS data silver sold off for large businesses to use because of our ignorance and a political conviction that that is the right thing to do. We might then find that it gets sold back to us because we need to use it in our NHS.

Patient data is a fundamental resource for improving patient care and it underpins the ability to deliver high-quality care and improve the standards of healthcare providers. National comparative data is a powerful tool in exposing pockets of poor care and allowing resources to be focused on poorly performing areas. With a growing focus on understanding variations in the quality and efficiency of clinical care, on improving patient safety and outcomes, and on more transparent data, national clinical audit is a key tool in supporting these agendas. Therefore, it is important for patients on a personal level and for the national well-being. It ranges from basic matters—I am very grateful to the Deb Group for explaining the analytics that it uses to improve hand-hygiene compliance in our hospitals and healthcare facilities—to the work of, for example, NHS Partners Network, which is part of the NHS Confederation. I was grateful for its briefing because it talks very sensibly about the need for NHS Digital and the Private Healthcare Information Network to talk to each other. However, what concerns me is how the governance of that works and how it fits into the issues that we have been talking about this morning.

It is also worth saying that many of us have received a briefing from Future Care Capital. For noble Lords who have not engaged with its briefings, I thought that it might be worth explaining what that organisation does. It is a charity that uses evidence-based research to shape future health and social care policy. It began its life in 1945 as the National Nursery Examination Board and it evolved, as many charities do, into something quite different over 70-odd years, but it continues to have royal patronage. It is asking us to reflect on the great data asset that we have in our 70 year-old NHS. I say to the Minister that we need to look at its proposals and take them seriously.

I should like to summarise with a few questions for the Minister, many of which have already been asked. Will the Government agree to develop a national strategy and action plan to harness the value of NHS-controlled healthcare data? How will the Government engage the public—many noble Lords have mentioned this—in building confidence in the use of their data and harnessing the value of their healthcare data to deliver better outcomes for society? What measures will the Government put in place to prevent the leakage of both social and economic value from healthcare data-sharing with third parties—in particular, corporates headquartered in other countries? That takes me back to the noble Lord, Lord Macpherson, who was quite right to say that you should follow the money. In my view, we should definitely be following the money here.

Do the Government support the principle of harnessing healthcare data on a commercial basis and, if so, what ethical safeguards will they put in place to maintain public trust in sharing NHS controlled data with third parties? Would it be a good idea to value the healthcare data that the Government control and perhaps include that valuation in the Chancellor’s balance sheet? What would that look like? What is the Minister’s view about the creation of a not-for-profit national body which can then ensure that the value of our healthcare data and its IP flow into this country and not out of it?

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O'Shaughnessy) (Con)]

My Lords, I congratulate the noble Lord, Lord Freyberg, on calling this debate and on his passionate interest in the topic, which he often shares with me by email and through other routes. His excellent speech was, indeed, a tour d’horizon, as the noble Baroness, Lady Walmsley, said. I am also grateful to him for sharing the moving story of his sister—the unavailability of data obviously contributed to her untimely death. Her case gets to the heart of what can sometimes be a rather technical topic. At the end of the day, we are trying to make sure that people are able to live longer and happier lives. The noble Lord’s sharing of that story really brought that point to life.

I also warmly congratulate my noble friend Lord Bethell on his outstanding maiden speech. He brought to life the anxieties that people feel about big data—the saliency of this topic is clearly rising with Facebook, Cambridge Analytica and so on—while discussing the extraordinary benefits. I have no doubt that he will be a huge asset to this House. He is someone I have known and worked with over the years. We may be getting a bit longer in the tooth now, but at one point we were thrusting, reforming young Conservatives. We are, in this House, young Conservatives again. I am sure he will bring exactly the same energy that he has always brought to reforming issues.

I thank noble Lords for a superb, high-quality debate. It has also been an extremely fertile ground for new ideas, some of which we are happily moving ahead on, and others of which I will, as ever, reflect on. All noble Lords agree that the NHS is already a world-class and comprehensive healthcare system. We also agree that it provides a unique opportunity, because of the circumstances of its founding, to bring together an unrivalled longitudinal dataset on the health and care of over 60 million people alive today. As the noble Lord, Lord Freyberg, and my noble friend Lady Neville-Rolfe reminded us, the use of that data over time, going back not just decades but centuries, has led to countless innovations and saved millions—possibly billions—of lives worldwide. As the noble Lord, Lord Scriven, and my noble friend Lady Rock pointed out, the potential gains from this dataset with the technologies at hand are enormous: improving standards; making the health system fairer, safer and more effective; and improving research so that patients benefit more quickly from medical breakthroughs.

The noble Lord, Lord Hunt, was right in saying that first and foremost it is about the transformation of direct care. The primary uses of data must come first and secondary uses second. Patient outcomes are the most important goal. It is also the case, as the noble Lord, Lord Kakkar, pointed out so wisely, that without technology we cannot achieve the goal of personalised medicine. Personalised medicine is essential, because we now understand so much about disease that no disease presents itself in one person in the same way that it presents itself in another. We cannot achieve that goal without technology and the use of data. As the right reverend Prelate, the Bishop of Southwark, and my noble friend Lady Redfern pointed out, it is also critical in overcoming some of the inequities and discrepancies in health outcomes that clearly exist in all disease areas today.

Noble Lords have raised many examples of the benefits of data sharing. My noble friend Viscount Bridgeman explained the benefits that derive from GP databases in England. The noble Baroness, Lady Walmsley, pointed out the role of performance data in winning the argument for transforming stroke care and rationalising services—not always a popular thing to do. The noble Lord, Lord Stone, gave the example of how healthtalk.org—I think that is the right name—is empowering self-care in improving outcomes. He also brought to life an international dimension: sharing data not just in one country, but across the world. That is really important for rare diseases. Our health charities have a very important role in this field, as he exemplified.

My noble friend Lord Suri talked very wisely about the local and regional dimension. Greater Manchester, which is often the leader in these things, has made tremendous use of joined-up healthcare records. Data has been used to build a picture of how patients with stroke are diagnosed and treated, for example. This has improved services for patients, including by supporting paramedics with diagnosis—which is not always there, as this debate has highlighted—through the development of an app to assist clinical assessment. That has led to a reduction of deaths from inter-cerebral haemorrhage by one-third in the 30 days following diagnosis. Think of the benefits to health and wealth that would accrue if we were able to roll out these innovations UK-wide and worldwide.

Yesterday, at NHS Expo I met several innovators, including those who are providing real-time data on the availability of and waiting times for urgent and emergency care centres in Kent, with the goal to go nationwide. Others were rating and promoting the best health apps, so that people can take more control over their care. These are just a few examples of what is possible.

We can all be zealous about the benefits of sharing data but, as noble Lords have pointed out, we have to be aware of the anxieties and concerns that people have, not least because of the recent history in this area, when we have tried to make progress. My noble friend Lord Suri pointed out that we stand at a golden age. I think he is right, but we will only realise that golden age and its benefits, which were brought to life by the noble Lords, Lord Macpherson and Lord St John, and my noble friend Lady Neville-Rolfe—with the challenges we face, we cannot have the luxury of doing without these benefits—if we appreciate people’s concerns about how data is used, whom it is shared with and whether it is safely, properly and legally used. People want to understand and have a say in how their data is collected and used. They want to see the benefits being realised for patients and for the health system more widely. I will return to this topic.

KPMG published a report yesterday showing that the NHS is the most trusted institution in the country with whom citizens are prepared to share personal data. That is a very precious thing which we must not put at risk. If we do, we will not be able to realise the kinds of benefits that we have been discussing. The first step is to keep data safe, as my noble friend Lord Suri pointed out. Since May 2017, when the WannaCry attack happened, we have invested more than £60 million in cyber resilience for local health trusts. We are planning to invest a further £150 million over the next two years to improve our ability nationally and locally to prevent, detect and respond to cyber incidents. Of course, we can never say never about these attacks, and they are becoming more frequent and more severe, but we are aware of the importance of putting in that resilience.

We have also introduced a national data opt-out which gives patients a choice about how their confidential patient information is used beyond their direct care. I take the point made by the noble Lord, Lord Hunt, about how challenging it is to exercise the opt-out for children. We are in the process of addressing that at the moment. The opt-out is in beta form before going live in October. I am pleased to tell noble Lords that, as well as NHS Digital, Public Health England is upholding the national data opt-out and we will be rolling it out to all NHS organisations over the next two years.

The noble Lords, Lord Scriven and Lord Hunt, and the noble Baroness, Lady Walmsley, talked about the importance of this issue and of engaging with the public and stakeholders. I want to use this opportunity to highlight and commend the work of the Wellcome Institute’s Understanding Patient Data initiative. It has produced remarkable resources and we have been working closely with it. It is helping us to win the argument with people that they ought to share their data because of the benefits that will accrue to themselves and to those whom they love. However, we can never think we have won the argument. It always needs to be made and we always need to provide that reassurance.

We are taking other actions. My noble friend Lady Neville-Rolfe mentioned the National Data Guardian, which we are putting on a statutory footing. We have implemented new data standards that she recommended. We have been explicit about not selling information, or access to information, on patients to marketing or insurance companies. That is a big concern. I can tell the noble Lord, Lord Scriven, that we have taken some important steps on governance, such as introducing Caldicott guardians—named after the first National Data Guardian—into the information governance framework, and trust board responsibility for the safe use of data.

Once we have addressed the safety issue, we will then need to start bringing together the available data. As noble Lords have explained during the debate, so much health and care data is still fragmented, often stored and transmitted in paper form and not easily shared. The horrifying consequences of this, such as key information falling through the gaps, have, unfortunately, been brought to life in the cases of the loved ones of the noble Baroness, Lady Thornton, and the noble Lord, Lord Freyberg. As my noble friend Lady Redfern pointed out, medication error is a consequence too. The noble Lord, Lord Kakkar, talked about a clean and curated dataset being useful not just in its own right but because of the value it would generate. He is absolutely right on that topic.

We are making progress through the global digital exemplar programme, for which my right honourable friend the Secretary of State announced today £200 million. The noble Lord, Lord Macpherson, will know that it is very unusual to announce new money outside spending reviews, although the Government have announced £22 billion over the next five years. However, this is a rollout of a £4 billion investment, which no doubt he was involved in agreeing at the last spending review. Let me reiterate that that is a £4 billion investment in technology in the NHS.

We are also looking at joining up data across different areas and settings. This has been highlighted by many noble Lords. We have launched the local health and care record exemplars, which is about creating common standards of interoperability so that data can be shared, not just through health but, critically—a point made by my noble friend Lady Redfern—across social care and local authorities as well. Therefore, wherever you turn up in the health system, your record will be at hand. As of now, through the NHS app, you can find your summary healthcare record in digital form. However, the exemplar programme is about your entire care record, which is critical for the reasons that we have discussed. The goal, in time, is that everybody—not just healthcare and care professionals but individuals themselves—will have near real-time access to the information that they need, wherever it was captured, to help them make the best clinical decisions.

As well as digitising the information that we have, we also need to make sure that new forms of information are added to those data records. Here, I would like to highlight the potential of genomic medicine and genomic data. Our work in this area is a shining example of partnership between the public sector, the life sciences industry and the research community, working together to benefit NHS patients. Through the 100,000 Genomes Project and the new genomic medicine service, which launches in October, we will sequence genomes for patients with rare diseases and cancers so that they can receive more personalised treatments and benefit from improved outcomes and reduced adverse drug reactions.

Several noble Lords, including the noble Lord, Lord Scriven, the noble Baroness, Lady Walmsley, and others, said that we need to make sure that we can harness data generated by patients through wearables and information about other aspects of their lives that may have a health impact, such as housing, as my noble friend Lady Neville-Rolfe pointed out. As the noble Lords, Lord Scriven and Lord St John, pointed out, that takes us to a very interesting, fundamental question about who owns the data. In my view, it is about co-ownership and having a joint record, which everybody contributes to but which is jointly owned. That reflects the collective nature of the National Health Service. However, the noble Lords are absolutely right that we have to settle that fundamental question.

We will clean up the data and then start adding more data to it. Then, we need to add the analytical capacity that will unlock its potential. This is where we get into the realm of artificial intelligence. AI can transform prevention and improve diagnosis and the treatment of disease. As the noble Lord, Lord St John, pointed out, it can improve cost-effectiveness. Its impact will be profound, as my noble friend Lady Rock said. As we have heard, it is already transforming diagnostic imaging, and, through investment made in our life sciences industrial strategy, we are investing in a network of digital pathology, imaging and AI centres of excellence across the United Kingdom. However, as my noble friend Lord Suri and the noble Lord, Lord Macpherson, pointed out, it is true that we lag behind other industries. We need to go faster. We are now coming to the thorny issue at the heart of this: we need to make sure that the benefits of applying AI to NHS data are fairly distributed.

It was a pleasure yesterday to be able to announce our initial code of conduct for data-driven technology, which sets out the principles of how these kinds of partnerships should work. They describe our expectations on data governance and commercial agreements, about which I will say more in a minute, and provide a basis to deepen the trust between patients, clinicians, researchers and innovators. Our goal is to create a safe and trusted environment in which to encourage innovation.

I would like to highlight quickly two things that will be critical to delivering that. First, digital innovation hubs will provide a safe, secure, legal opportunity for innovators from the public sector, academia and the private sector to access patient data to test algorithms and new products for research purposes in a way that delivers the very highest standards of probity. Secondly, as the noble Lord, Lord Kakkar, pointed out, we need to talk about having the right regulation. I have asked the NHRA, which is an outstanding regulator, to look at how we can provide a framework to encourage the regulation of digital health technology from the point of view of safety and efficacy, as we do not yet have that.

On the topic of commerciality, we know that data in the NHS is a crucial national asset with huge value. Making it available for research will incentivise the life sciences sector to locate in the UK, which is something that we all want. The noble Baroness, Lady Thornton, was unwarrantedly pessimistic about the potential of these public/private partnerships. They have existed for decades between the pharmaceutical sector and the NHS, which has offered data through clinical trials and other means. This, of course, is about taking it up another level. We need to make sure that these partnerships develop, but that they do so in a right and proper way and that the NHS gets a fair deal.

[Baroness Thornton]

I absolutely accept what the noble Lord is saying, but the record so far of the NHS’s business acumen has not been great.

[Lord O'Shaughnessy]

That is a point to which I will return. I recognise absolutely the concern voiced in this Chamber and in debates elsewhere about making sure that the NHS gets a fair deal.

We have heard from the noble Lords, Lord Mitchell and Lord Freyberg, about Sensyne Health. One of our own number, the noble Lord, Lord Drayson, founded this company, which has taken an interesting attitude while working with lots of university hospitals and trusts. It has both shared equity in the company with those trusts and given them royalties for algorithms built on the data that it holds. For me, this is a step change in how we conceive of data as being not just a service rendered but a form of capital invested. As we work to create more guidelines on the right kind of commercial strategy—and I reassure noble Lords that we will work on that over the autumn—these must recognise that people view data more like a form of capital, and therefore the commercial arrangements need to reflect that. Having said that, we also need to provide a degree of flexibility. The noble Lord, Lord Macpherson, explained the difficulty sometimes not just in valuing this data—we are engaging in that Treasury exercise—but in making sure that the right arrangements occur between the public sector, the private sector and academia.

If I may, I want to take issue with something that the noble Lord, Lord Mitchell, said about the difference between “maximised” and “fairly”. We are slightly dancing on the head of a pin here, and I will explain why. Of course we want to maximise the benefits to the NHS, both directly through value sharing and, down the line, in the development of new technologies and treatments. Equally, as is the case with oil, if you ask for too high a price, people will not buy it and there is nothing to share. Therefore, when I talk about fair distribution, it is about making sure that we maximise the benefits and that the role of the NHS’s contribution in the creation of maximal benefits for health and wealth is recognised fairly.

I am interested in the noble Lord’s idea of a sovereign health fund. He and I have discussed that previously and I want to consider it more. However, it is a fair criticism that we need to improve the commercial acumen in the sector. Some ideas have been mentioned, including the creation of a technology transfer office or similar for the NHS, and we are certainly considering that.

I want to very quickly touch on the issue of skills, which was raised by the noble Lord, Lord Kakkar. We have asked Dr Eric Topol to lead a review on changes in technology and new developments to make sure that we have the right skills in the NHS. He will publish his final report by the end of the year, and that will feed into the long-term funding plan that we are developing.

We know that the NHS has a huge asset in its hands. People have bequeathed a precious gift to it and we have to get the maximum benefit from it. At the same time, we need to bring people’s trust and provide reassurance at all times. As the noble Lord, Lord Hunt, said, it is a fine balance—a line that we need to tread. The Government are very conscious of that. Things are moving quickly; we need to move quickly as well. That is why this debate has been extremely useful both in raising the salience and highlighting some of the issues but also, as I said, in providing a ground for new ideas.

Many noble Lords asked whether we will have a strategy. They will know, have seen and it has been mentioned that we have a new Secretary of State. He is not just a technophile but I believe was actually a coder at some point in his life. I reassure noble Lords that not just embedding technology but realising the potential for value and making sure it is maximised and fairly distributed will form a core part of the long-term plan we are developing. I look forward enormously to working with all noble Lords in this House who have contributed to this debate and elsewhere to make sure that we are able to achieve that goal.

Mental Capacity (Amendment) Bill [HL]

Baroness Thornton Excerpts

Committee: 1st sitting (Hansard): House of Lords
Wednesday 5th September 2018 Lords Chamber

I have been discussing this with general practitioners. I declare that I was on the safeguarding toolkit working party of the Royal College of General Practitioners. Safeguarding is different from liberty protection safeguards or a deprivation of liberty, but sometimes in people’s thinking they get muddled up and unclear, and it becomes particularly difficult when you are talking about people who are cared for in their own home. I am sure that we will come on to that later, but I would be interested to know whether the Minister agrees that the general thrust we should be taking is that the care plan must be appropriate for that person and constantly revisited, and that we must be able to make sure that all the views of those people who have the welfare of the person at heart, and who have been perhaps chosen by that person to speak for them when they can no longer speak for themselves, are respected.

[Baroness Thornton (Lab)]

My Lords, I will speak to Amendment 20, which is in my name on the Marshalled List and has been grouped with the amendment in the name of the noble Baroness, Lady Finlay.

During the briefing we had with the Bill team and the Ministers, my notes tell me that the first clause is a key change to the new regime, and that it is concerned with the portability of deprivation of liberty. I understand that the noble Baroness’s amendment makes sure that Section 4B—on the deprivation of liberty necessary for life-sustaining treatment or vital act—and Schedule AA1 are compatible with the provisions set out in the rest of the Bill and that they do not conflict with a valid decision to refuse care or treatment. The noble Baroness raises some important and substantial issues right at the beginning of the Bill and raises issues of conflicts which will need to be resolved.

Amendment 20 in my name comes from paragraph 15 of proposed new Schedule AA1 in the Law Commission’s draft Bill, quoting it exactly. It prevents the responsible body authorising arrangements for the cared-for person to reside in, or receive care or treatment somewhere, if those arrangements conflict with a valid decision by a donee of a lasting power of attorney or of a deputy appointed by the Court of Protection. As I say, the wording is exactly the same as that in the Law Commission draft Bill.

Under deprivation of liberty, a deputy and attorney may object to any deprivation of liberty and effectively block it, pending an application to the Court of Protection. I can see no obvious reason for excluding this from the Bill. The Government claim that it is already in the main provisions under the original Act—in Section 6(6) —but this is only the case where the basis for the deprivation of liberty is in “best interests”. If the basis for DOL is risk to others, that would not necessarily be the case, and so for the avoidance of doubt it is important to include this clause. If we do not, the risk of litigation on this point is probably quite high.

Deputies and donees should be able to refuse a deprivation of liberty, so this amendment seeks to ensure that the views of those donees and deputies, who have been appointed by the cared-for person to make the decisions in their best interests—as was eloquently outlined by the noble Baroness, Lady Finlay—are given appropriate weight with regard to where the cared-for person resides for care and treatment.

I am pleased to say that this amendment and what the noble Baroness, Lady Finlay, said, enjoys widespread support from the organisations who have found the time, even under the pressure we have all been under, to say that they support this. They include Mencap, VoiceAbility, Mind, the National Autistic Society, Liberty, Age UK, Sense and many others. The amendment looks at the clash or overlap between the different regimes that govern this area of law. I must ask why the Government did not adopt the Law Commission formulation. The Minister should be aware that I will return to that theme throughout Committee, because the Government seem to have cherry picked the Law Commission report, and some of the most important safeguards of liberty seem to have been omitted or watered down by the Bill.

[Baroness Browning (Con)]

My Lords, I refer to my interests in the register. I will pick up on two points that have been raised in the amendments, particularly the amendment in the name of the noble Baroness, Lady Finlay.

At Second Reading, I too raised my concern about the status of attorneys with lasting power of attorney, particularly over wellness and health. These are some of the most personal decisions. In some ways, I am more concerned about that than about attorneys who have power over the money. Money always seems a rather black and white matter—it either is or is not a good idea. But there are many shades of grey over health and, in particular, well-being. I should like to link this with decision-making and the other point in the noble Baroness’s amendment, about the need for qualified speech and language support to interpret and make sure there is a clear understanding of what “P”’s interests really are.

When you look at certain people with certain disabilities, particularly those with communication disorders—such as autism, learning disabilities and, of course, dementia—it is not always the case that they cannot express a view. But getting to that view—unless it is a real, life-threatening medical emergency—takes quite a long time. First, particularly those with autism and a learning disability, the individual has to be comfortable and familiar with the person asking the questions, however experienced. It is no good sending a stranger in for a five-minute cup of tea and a quick chat and thinking that person will then disclose their innermost feelings. How many of us would?

The point is that getting to that view might often be about something known for many years by someone who has been appointed as an attorney with a lasting power of attorney. I believe the two things are linked in those cases. We know from the Alzheimer’s Society that such a lot can be achieved for the quality of life and well-being of people with dementia and Alzheimer’s by giving enough time, when asking a question, to allow the person to process the information before they give an answer. Brain function is very different in these people. They need time to process the question they are being asked and to process how they will communicate the answer; it can take quite a long time.

This point was picked up quickly by the Alzheimer’s Society which says, for example, on a very simple matter, that when people with Alzheimer’s in residential care homes are asked whether they would like tea or coffee and do not immediately reply, they are processing the question and that can take a long time. They might prefer coffee today, but because they had tea yesterday, the answer may be quickly assumed—“I expect you will have tea, you always have tea”—before they can even process the information and the way they will communicate the answer.

How much more complex it is, and how much more time is needed when people are being asked more complicated questions about potentially life-changing decisions. This cannot be left only to someone with speech and language experience, important as that is, and such people need to be experienced. But people with a lasting power of attorney, who might have held an LPA for many years, and who know the individual extremely well, are in a prime position to act as an interpreter when important decisions are being made.

I believe my noble friend is aware of my view on this already. Those of us who served on the original Bill and its pre-legislative scrutiny many years ago know that a lot of thought went into the existing Bill on LPAs. To have one part of a Bill give rights to an individual through their attorney but then to diminish that in another part of the Bill, through amendment, seems not only wrong but seriously, morally wrong. I hope my noble friend will address this point when he replies to this amendment.

--- Later in debate ---

The Bill makes sense in terms of cost-cutting, but like many other Members of your Lordships’ House I do not understand why many of the safeguards that the Law Society proposed needed to be retained have not been retained. If the Minister can explain that, and the strength of the connection back to the principles of the Mental Capacity Act, then perhaps his job in the next few days might be a good deal easier than it will otherwise be.

[Baroness Thornton]

I am grateful to my noble friend for tabling this clause stand part. It was necessary for a number of reasons. I am also grateful for the contributions that have been made because they bear out the reason why it was important to put down this debate. The first reason has been alluded to by many noble Lords and is the very unsatisfactory scheduling of the Bill. It means that noble Lords and stakeholders have not had sufficient time to consider the Bill and all its amendments for today. The vast majority were put down last week, and the Marshalled List became available yesterday. It was difficult for anybody to see whether the tabled amendments probed the Bill sufficiently and made all the improvements that noble Lords deemed worthy of consideration.

There is a lesson here about scheduling: if you have the Second Reading immediately before a recess, a sufficient number of sitting days must be given to allow noble Lords to table amendments and have the necessary discussions with stakeholders and each other. Getting almost 100 amendments tabled from a standing start when the House rose is pretty good going, and I congratulate noble Lords across the House for that. Some of us were emailing each other and the Public Bill Office from the poolside or the middle of fields during the Recess. However, people are playing catch-up, which does not bode well for a thorough-going scrutiny.

I congratulate the Bill team for managing to talk to noble Lords during the Recess, but in some ways they must have had an unsatisfactory time as well because we did not have the full list of amendments until Friday evening. As many noble Lords have said—it is clear from my mailbox too—in the last two or three days stakeholders are also playing catch-up and are expressing great concern about some aspects of the Bill. In a way, the frustration that that has raised is why my noble friend has tabled his amendment to oppose the clause stand part. That allows us not only to mention things that are not covered in amendments but to raise these points.

From my point of view, and from these Benches, depending on what the Minister says in his reply, we might need to raise issues of scheduling and time to consider some of the serious implications of the Bill, and possibly table amendments at the next stage that address some of the concerns raised in this debate—particularly the issue of care home managers. Notwithstanding the issues raised by the noble Baroness, Lady Finlay—she may well be right about people understanding the processes in the Bill—that does not alter the fact that we do not know who will authorise or whether it will work.

This links to my second point, which is about consultation. I would like to know where the care home manager’s role in this came from. It happened between the Law Commission draft Bill and this Bill. Suddenly, the care home manager is it, and I think that that might probably have been a surprise for some people—certainly for the noble Baroness, who did not hold back in her views about care home managers. On the consultation issue, it is clear from the Law Commission report that it did extensive consultation, leading to the creation of its draft Bill. There were something like 83 nationwide events and 583 written responses from interested persons and organisations. Some of those events were very significant indeed, with many stakeholders. Where did the issue of the role of care home managers come from? I should like the Minister to share that with us, as he must be aware of the level of disquiet about the expectations and the responsibilities that would have to be assumed by care home managers for the assessment required to authorise the deprivation of a person’s liberty when the person lives in their care home.

I also want to know the view of the CQC on this proposal. What is the view of the care providers, the ADASS and the LGA? They are all key stakeholders in that decision. I should be grateful to have the Minister’s take on the view of those important organisations on this proposal. I could not find the issue among the material circulated by the Minister or, indeed, in the letter he sent, which I found useful and informative.

My noble friend has done the House a favour in raising these issues and allowing a large number of questions to be asked at this stage, which might inform the next day’s discussion in Committee, the next stage of the Bill and perhaps also the discussions that we will need to have in the coming weeks.

[Lord O'Shaughnessy]

I start by agreeing with the noble Lord, Lord Hunt of Kings Heath, that of course extensive scrutiny is deserved for legislation of this kind, which we have achieved both at Second Reading and, for those who could not be there, in the second Second Reading debate that we have just had. That scrutiny is obviously reflected in the 100 or so amendments that have been tabled. It is worth using this opportunity, as the noble Baroness, Lady Finlay, did to some extent, to remind ourselves why we are here pursuing this legislation.

The noble Baroness, Lady Barker, asked why now? Well, in 2014, the House identified that the DoLS system was not fit for purpose and the Government tasked the Law Commission with completing its report into DoLS. It recommended that the current system needed to be replaced as a matter of pressing urgency. I will come on to the point about the discrepancies between the two approaches but, nevertheless, that was its view. The Government stated that we would do this as soon as parliamentary time allowed—part of the issue around scheduling is indeed “when parliamentary time allows”. It is important to use opportunities when they arise to do important things, even if it means that people have to work during the summer or holidays. I realise that that is not always ideal, but the scheduling, for example, of Committee over a long period—and we will then need to think about Report—should give lots more time for these kinds of discussion. I reassure noble Lords that we want to have and are open to those discussions.

The model that we have created is based on that developed by the Law Commission and, like the Law Commission, we want to increase the protection of some of the most vulnerable people in society, to protect their rights, not just in theory but in practice, and to improve access to justice. I confirm to noble Lords that we have worked and continue to work with a range of stakeholders to build on the Law Commission’s model and to produce a streamlined system. “Streamlined” is an important way of describing this, because the noble Baronesses, Lady Jolly, Lady Barker and Lady Murphy, talked about cost-cutting. This is in fact about creating a system that has the effect that we want with the budget that it is given; that is the point. As we know from the backlog, lots of people are being denied access to justice because of a system that is disproportionate in its application. That is what we are trying to solve, so that those cases that really do deserve the highest level of scrutiny are able to receive it. That really is at the heart of what we are trying to do. I emphasise that Nicholas Paines, the Law Commissioner who led this review, said that this Bill,

“will go a long way towards addressing the flaws of the current system and better protect the most vulnerable in our society”.

I would not claim at this point in the proceedings that it is perfect. I am sure that we can improve it, but it is important that we are doing it, that we are doing it now and that it has support from the Law Commission itself.

More recently, the Independent Review of the Mental Health Act: Interim Report, which was referenced by the noble Baroness, Lady Barker, and led by Simon Wessely, stressed the need for an,

“appropriate calibration between resources spent on delivery of care and those spent on safeguards surrounding the delivery of that care”.

That is what we are trying to achieve through this process. I reassure the noble Baroness, Lady Tyler, who was quite right to talk about the interaction and interface between the two Acts and how they operate that, while we are taking this opportunity to act now while we can, if there are future recommendations that mean there have to be further changes, we would be open to those. This will not be the last opportunity to make sure that the interface between the two Acts, once the reviews have been completed, could be amended, if that is what is necessary. It is important that we have acted now and that those 108,000 people currently in the backlog will have swifter access to justice—that is the main argument. That is my Second Reading speech summarised and repeated.

From what the noble Lord, Lord Hunt, has said, I do not think that he wants to remove this clause, not least because it would remove the new system while not stopping the repeal of the current system, and nobody wants that. At the heart of what the noble Lord spoke about is this focus on care homes, which I think is worth dwelling on. The system has been carefully designed to ensure that there is independence and proper accountability. Care homes will not authorise any applications. That will fall to a wholly independent responsible body—the local authority.

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[Baroness Barker]

My Lords, I hope that it is permissible for me to rise again. For the avoidance of doubt, will the Minister confirm that I understood him correctly? Is he saying that the role of the care home manager has not changed? I understand that, under the existing law, a care home manager may request that somebody’s capacity be assessed, but that assessment is not usually done by them. That assessment is done by somebody else. Is he saying that that is not going to change? I am sorry, but I think it very important that noble Lords understand what the Minister says.

[Baroness Thornton]

I understood that the Minister said “escalate”, which means that something changes. Perhaps when he is answering the question of the noble Baroness, Lady Barker, he could also explain the word “escalate”.

The Government may need to think about carrying out some form of assessment of the appropriateness and suitability of care home managers to undertake this task. If that has not been done, perhaps it needs to be done in the next month or so.

[Lord O'Shaughnessy]

In answer to the noble Baroness’s question, the point that I was making is not that the role of the care home manager will not change but that they are not being asked to do something of which they have absolutely no experience or responsibility for at the moment. As the noble Baroness, Lady Finlay, pointed out, care home managers are already required to make applications and to consider capacity and restrictions, so they already have a role. The distinction is that, as the Bill sets out, the assessments can be made within the care home itself—of course, not by a person with direct responsibility for care. That is one of the issues, of avoiding conflict of interest. In all cases, those will be authorised by the local authority. If there is any reason, through that authorisation, for concern—for example, of conflicting views between the person cared for and their family—then the AMCP, the mental capacity professional, will have the opportunity to decide on the right course of action. That is what I meant by escalate—not that there is a choice of whether to escalate authorisation to the responsible body, as that will happen in all cases, but that there is a further opportunity for consideration by an AMCP if there is any sense of this happening. We will explore in more detail in future groups whether there is a reason for further investigation, including, of course, speaking to the cared-for person, their family and others.

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Moved by

[Baroness Thornton]

2: Schedule 1, page 6, line 2, leave out “18” and insert “16”

[Baroness Thornton]

My Lords, we are moving to the issue of changing “18” to “16” and applying the provisions of the Bill to 16 year-olds. I have four points to make.

First, this amendment is supported by the LGA and the ADASS. Secondly, the GMC is concerned that, given that the Mental Capacity Act applies to people aged 16-plus, excluding those below 18 from the liberty protection safeguards in the Bill may leave an important gap in the liberty safeguards. Thirdly, the Royal College of Psychiatrists has pointed out that case law has established that the parents of children under 16 may give consent to what would otherwise constitute a deprivation of a child’s liberty where the matter falls within the “zone of parental responsibility”, but it has been held that a parent cannot give equivalent consent for a 16 to 17 year-old. It therefore argues that the Bill should be extended to 16 to 17 year-olds to provide them with better safeguards, as they are not served well at present.

Finally, the Law Commission looked at this in some detail. It was part of its remit from the Government that it should consider,

“the position of young people aged 16 and 17 (but not children aged 15 or younger). Most of the Mental Capacity Act applies to people aged 16 and over. However, the DoLS only apply to adults aged 18 and over. There are several legal provisions that permit the deprivation of liberty of children … Under section 25 of the Children Act 1989, a child who is being looked after by a local authority can be placed or kept in secure accommodation in England, provided for the purpose of restricting liberty. The Mental Health Act can be used to detain a person of any age suffering from mental disorder for the provision of medical treatment. Beyond these cases, the deprivation of liberty of a young person can be authorised by the Family Court or Family Division of the High Court under their respective inherent jurisdictions or by the Court of Protection”.

There is of course a complicating factor: namely, that,

“the Strasbourg court has recognised the right of parents—in certain cases—to consent to restrictions placed on their child which would otherwise amount to a deprivation of liberty”.

That refers to the Birmingham case, which noble Lords may well be familiar with.

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[Lord O'Shaughnessy]

I would like to thank the noble Baronesses, Lady Thornton and Lady Murphy, for tabling these amendments, which seek to apply the liberty protection safeguards to 16 and 17 year-olds in the same way that they apply to adults. Noble Lords have been absolutely right to point out, as they did at Second Reading, that in the Government’s response to the Law Commission report, we accepted in principle that 16 and 17 year-olds would be included in the new liberty protection safeguard system. I know that noble Lords are motivated not just get to get this right in general but also, as the noble Baroness, Lady Thornton, said, in relation to specific cases that are known to them, sometimes very close to home. I understand and sympathise absolutely with the desire to do that.

The noble Lord, Lord Touhig, is also right to say that it is something I said I would consider and would seek to bring further news. We are still considering this very actively. What is clear even from this brief debate is that, as the noble Baroness, Lady Tyler, pointed out, there are some critical interactions that we need to get right with other bits of the system. These include the role of parents, how the safeguards would apply to looked-after children, and interaction with processes such as the education, health and care planning processes for those with special needs and disabilities. As the noble Baronesses, Lady Murphy and Lady Thornton, reminded us, we need also to be mindful of the current court case.

At this stage, I repeat and underline our commitment to make progress and to offer the best possible protection for this group of vulnerable young people. Proper scrutiny and detailed thought is required, and that thought is ongoing. I recognise the arguments for including this group. Like all noble Lords, I want to make sure we get this right and get the interactions right, so that they do not end up being fixed subsequently by the courts, as the noble Lord, Lord Hunt, pointed out in a different context.

Our intention is to use the time between now and Report to continue having those discussions, both with noble Lords and with stakeholders throughout the sector, to make sure we can get this right. On that basis, having given the commitment that we will work hard to do what we can between now and Report to get the right outcome, I hope the noble Baroness will be prepared to withdraw her amendment.

[Baroness Thornton]

I thank the Minister for that. What can I say but, “Thank you, and let us hope so”?

Amendment 2 withdrawn.

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[Baroness Barker]

My Lords, I shall not detain the Committee for long but it is important to recap on a bit of history. The original legislation that came before your Lordships’ House on this issue—the Mental Incapacity Bill—was subject to the first ever pre-legislative scrutiny. In going through that then very innovative procedure, Members of this House and another place did a couple of things which at that time were game-changing. One was that we invited people who lacked capacity to come and give evidence to us. But we went further than that. When we produced our report, we invited them back to discuss with them what we had listened to and what we had changed. One of the first and most important things that we did was to change the title from the Mental Incapacity Bill to the Mental Capacity Bill. We also, for the first time ever, produced an easy-read version of a Bill.

I strongly support my noble friend Lady Tyler because this feels like a real regression in thinking. I understand that the term is there because somebody somewhere believes that it has a legal meaning. We came up against those same arguments all those years ago and this House led the way in getting lawyers and counsel to change their minds. I do not see a reason for us not to do the same again.

I wish to add one point. I vividly remember listening to the people whom we invited back to talk to us after we had produced our report. At this point, there were only Members of your Lordships’ House in the room—the Commons were busy and had not turned up. I remember one particular gentleman who said, “When I first saw this, I thought it was really rubbish, but actually you’ve done quite a good job”. I have to say that in all my years in your Lordships’ House I do not think that I have ever received a more sincere accolade. That is not to belittle anybody’s contribution to this, but I think that my noble friend has made a very strong point.

[Baroness Thornton]

These Benches support the amendment. As the noble Baroness, Lady Tyler, and others have said, the reference to unsoundness of mind is offensive to those with learning disabilities, dementia and brain injuries and their families. The noble Baroness, Lady Barker, has just demolished all the legal arguments for including the phrase in the Bill, and indeed a lot of organisations, including the Royal College of Psychiatrists, say that it out of place in today’s society. The GMC argues that it is not clear what added protection or benefit is achieved by using the term. VoiceAbility says that “unsound mind” is not used in modern psychiatry and that it could lead to debate in disputes. Therefore, I hope that the Minister will be as agreeable about this amendment as he was about the last one.

[Lord O'Shaughnessy]

I do hate to disappoint. I thank the noble Baronesses for introducing this point. We discussed it at Second Reading and I have huge sympathy with the concerns about this kind of language. Frankly, it is not the kind of language that we use. As the noble Baroness, Lady Murphy, pointed out, she has not diagnosed anyone as being of unsound mind for decades. It is a throwback and we are in the process of destigmatising mental health issues, as the noble Lord, Lord Cashman, pointed out. That is an endeavour that we are engaged in earnestly together. However, it is important to distinguish between the operational language used in care and the language used in the courts, and I want to discuss that.

This is not just about semantics; it is about terms that have established legal precedent and a jurisprudence based on their interpretation. It is worth discussing the consequences of deviating from a term that is in current use because of its role and the fact that the phrase is used in the European Convention on Human Rights. As the noble Baroness, Lady Tyler, pointed out, the term has not changed since the 1950s and the creation of the ECHR, and it has subsequently been used by the Strasbourg court. There is a risk, and it is worth recognising, even if it is one that noble Lords might be prepared to contemplate. The risk is that a different expression such as the one proposed by the noble Baroness, Lady Tyler—it is a perfectly reasonable starter for 10, as I think she called it—could create a gap for some people who need access to liberty protection safeguards but do not meet the criteria of having a disorder or disability of mind, although they would have met the criteria of unsound mind.

It is important to note that the Law Commission used this language. We have been accused of deviating from the Law Commission Bill but it used this language and we have copied it to ensure that the liberty protection safeguards are compliant with the ECHR and that there is no gap with people not being covered. This could include people with learning disabilities, brain disorders or disorders of consciousness. In essence, the problem here is not this Bill. In a way, the Bill has a problem because of the language that has not been changed since its creation in the ECHR.

Therefore, although I agree with the sentiment behind the amendment, new terminology would risk creating a gap for people between the ECHR and this proposed law, and we are all concerned to avoid such gaps. Any gap would require people to have recourse, instead, to the Court of Protection. Therefore, it is not the case that people would have no recourse; they would have recourse to the Court of Protection, but we know that the people being cared for and their families and carers can find that an intimidating and difficult process.

It is also important to note that the Court of Appeal has indicated that some people with certain forms of learning disability might not be considered mentally disordered under the definition put forward by the noble Baroness but would still be considered of unsound mind for the purposes of the convention. That is another reason why there is a risk of a gap. For example, there is a particular risk that some individuals with brain injuries, or certain disorders of consciousness, might fall within the gap.

At Second Reading I did say, earnestly, absolutely and honestly, that I wanted to take this away and consider it, because of the frankly unsatisfactory nature of the term when it comes to modern practice. We have also listened to the contributions of a range of stakeholders—a number of people are of course very interested in this, and not just in this House—and to the contributions of the Joint Committee on Human Rights to see whether it is possible to use better language. I know this is not something the House will welcome, but I have concluded that, although the term is regrettable, there is a risk in using alternative language of creating a gap. Between those who would be captured under the definition suggested by the noble Baroness, Lady Tyler—or, indeed, potentially any other definition—and those currently captured under the terminology “of unsound mind”—

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[Baroness Finlay of Llandaff]

My Lords, I have an amendment in this group that does not sit terribly well with the first two—but so be it. I will be brief. These attempts to define a deprivation of liberty are nobly submitted, but I worry about potential unintended consequences from the wording. I will not go through them in detail, but I hope that the Minister will assure us that this is something we can take away and look at. One difficulty is that one person’s imprisonment—a deprivation of liberty—might not be a deprivation of liberty to another, so this may be very personal in some aspects.

On Amendment 81 in relation to a “vital act”, I hope that the noble Baroness, Lady Murphy, will take reassurance from me—I do not know whether the Minister will agree with this or not—that anything done must be in a person’s best interest. Part of that is that it is a benefit and not a burden—or it may be a burden, but the benefits outweigh the burden. That has to be a fundamental principle in clinical decision-making.

The reason I tabled Amendment 82, which relates to an urgent authorisation, is that, looking through, I was concerned about unintended consequences from the way the legislation was written. I could see two, possibly—but they may be misplaced anxieties. First, in a true emergency situation, as a consultant in emergency medicine said to me, you just get on and do what you have to do. You do not go and look at paperwork. So, in an emergency situation, you may have to restrict somebody’s liberty to do what you have to do, which is in their best interest. You do not do something that is not in their best interest—and the last thing we want to do is impose any more bureaucracy or paperwork.

So I suggest that, possibly in the code of practice and not in the Bill, it should be clear that an urgent authorisation is an authorisation to begin longer-term care, but in an acute situation, in a clinical decision, nobody would expect people to even begin this process until we get to about 48 hours. I say that because a clinical decisions unit will normally have people staying in it for under 24 hours, as they may even on an acute medical ward, before being moved to a longer-term in-patient unit where their longer-term care may be assessed. Of course, we have people who have a transiently impaired capacity because of illness and the treatment of that will restore their capacity, such as the diabetic whose diabetes is out of control through either hyperglycaemia or hypoglycaemia, and things such as hypocalcaemia as well. None of those should be included.

The concern at the other end was that an urgent authorisation could be used for example to take a confused person with advanced dementia where care at home had completely collapsed. Possibly their main carer at home had suddenly been admitted to hospital. They would then have to be moved into a nursing home placement at great speed, but that may not be what they want and they cannot consent to it. They would have to be moved to that place, be in a placement and be assessed there. There needs to be some time limit so that this cannot linger on for months or years, with somebody saying, “Oh, well, they are here under an urgent authorisation”, rather than a longer-term authorisation. That is why I tabled the amendment. I accept that it is not perfect, but I hope it is something we can look at. It may be that the code of practice can clarify those issues.

[Baroness Thornton]

I have added my name to the amendment tabled by the noble Baroness, Lady Jolly, precisely because I thought we needed to have this discussion. That was exactly right. I would hate to choose between the two amendments, but this sets out when deprivation of liberty occurs:

“Arrangements that give rise to a deprivation of … liberty”,


are when the cared-for person is placed,

“under continuous supervision and control”,

they are “not free to leave” and the responsible body believes that it is in the cared-for person’s “best interests”. That is worth putting on the face of the Bill if at all possible.

The Joint Committee on Human Rights made a strong argument in favour of a statutory definition. I read its report and it seems absolutely right that that is what we should do. I would be interested to hear what one of the lawyers in our midst might have to say about this: whether they think that it would be a useful thing to do and whether the stabs we have made at it so far are helpful. We are interested in this discussion but we realise that this is the beginning of the discussion rather than something that may be appropriate right now.

When listening to the noble Baroness, Lady Finlay, talking about her amendment, it occurred to me that this is one of those occasions when technology is important. When you have an emergency admission, you need to be able to input the name of the person into a PalmPilot, which will tell you whether a DoLS is already in place and whether a do not resuscitate order has been made. Recently I have had experience of exactly this situation with a family member. Because the information was not readily available in an emergency, we ended up where we did not want to be. I just add that to the debate because I know that the Minister and his boss are very interested in technology and its uses in the health service. This is another of those occasions where it might be useful.

[Lord Woolf]

Perhaps I may respond by giving one lawyer’s view on the matter referred to by the noble Baroness, Lady Thornton. I should put on the record that I am a member of the Joint Committee on Human Rights and therefore was a party to the report, and of course I support it.

When the opportunity arises to deal with a situation where it is clear that a decision of the Supreme Court has had consequences which may never have been anticipated, it would sometimes be helpful if the judges had the opportunity to look at the matter again. If the sort of steps so ably advocated by the noble Baroness, Lady Murphy, were taken, I would suggest that serious consideration should be given to them as they could have a beneficial effect from the pragmatic point of view as well as on the point of principle.

I am sorry, but I ought to have added that I have a relative who could be affected by this legislation, and I declare that.

Mental Capacity (Amendment) Bill [HL]

Baroness Thornton Excerpts

Committee: 1st sitting (Hansard - continued): House of Lords
Wednesday 5th September 2018 Lords Chamber

[Lord Hunt of Kings Heath (Lab)]

My Lords, I have added my name to the amendment tabled by the noble Baroness, Lady Hollins. As she eloquently said, the puzzle relates to paragraph 17 of new Schedule AA1 on consultation, which references those who must be consulted. The aim of the consultation is,

“to try to ascertain the cared-for person’s wishes or feelings in relation to the arrangements”,

but the paragraph does not specify that the cared-for person must be consulted. The Minister might just refer me to Section 4 of the Mental Capacity Act and say that it is covered there, but so are the provisions in sub-paragraphs (a) to (e) in paragraph 17(2)—they are all listed in the best interests test. Therefore, the puzzle is why the Government have decided that there should be no attempt, at least in statute, to seek the cared-for person’s wishes and feelings. We are already concerned that these measures are not focused on the interests of the cared-for person; they are about streamlining bureaucracy and saving money, and this rather lends to that suspicion. I hope that the Minister will be able to agree to the noble Baroness’s amendment, because it is a very important symbol of what this is really all about.

[Baroness Thornton (Lab)]

My Lords, this group of amendments tests the proportionate nature of the decisions being taken. Amendment 29 would put the views of the cared-for person at the centre of the assessment and ensure that adequate weight was given to their wishes and feelings. I have not been able to find in the Bill where that is expressed, and that is shocking and surprising. We have to see a clear statutory duty to consult the cared-for person, and the scope of that consultation must include their past wishes, feelings, values and beliefs. I invite the Minister to tell me whether he believes that the Bill as it stands achieves that, because I cannot see that it does. If this amendment is not agreed to, the Minister and the Bill team must think about how they can best make sure that the Bill reflects the need for consultation with the cared-for person.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O'Shaughnessy) (Con)]

I thank noble Lords for tabling their amendments and for contributing to a debate that has continued the discussion that we had before dinner. It again gets to the heart of why we are here, which is to make sure that when people need to be deprived of their liberty, it is in their best interests to do so and that the restrictions are proportionate and necessary and so on.

I agree with the spirit of the amendments. It is important that we intend to, and do, safeguard the well-being, wishes and feelings of the cared-for person. Dealing with the first set of amendments, I take this opportunity to reassure noble Lords that the changes being sought are already required by law in several ways.

First, the European Court of Human Rights has made it clear that a decision on whether arrangements are necessary and proportionate must include consideration of the cared-for person’s wishes and feelings about the arrangements. It should also be noted that, as the noble Lord, Lord Hunt, pointed out, wishes and feelings are already a part of the first-stage best interests decision-making under Section 4 of the Mental Capacity Act and I can confirm, as I have done already, that the Bill does not change this. Furthermore, wishes and feelings will also be considered as part of the “necessary and proportionate” test, and the code of practice will provide further detail about how that will work in practice.

Going even further, as has been referenced by several noble Lords, we have created in this Bill a specific requirement to ascertain a person’s wishes and feelings in relation to the proposed arrangements through the duty to consult with anyone with an interest in the cared-for person’s welfare—first and foremost the person themselves, as well as their family, carers, friends, advocates, interlocutors or anybody with a substantive interest in their care. I believe that there is substantial legal protection, force and direction to make sure that the person’s wishes and feelings are considered first and foremost in any of these kinds of arrangements. As this debate has demonstrated, there are clearly lingering concerns that that is not the case, because of the existing framework, notwithstanding the enhancements through the duty to consult that we are introducing. However, I am eager to make sure that it is well understood, and to work with noble Lords so we can make clear that those responsibilities already exist, both in statute and—

--- Later in debate ---

[Lord O'Shaughnessy]

I take the points that the noble Baroness is making. Obviously we will discuss this further. But it is important to reflect on the new duty to consult. It is not a duty to consult everybody but the person, so it is not fair to say that there has not been an earnest attempt in the Bill to make sure that the person is fully consulted in the necessary and proportionate test, even if the noble Baroness does not like the precise way that that has been done. It is important to set that out.

[Baroness Thornton]

It is a spectacular omission not to mention the very person whose liberty is being restricted. I ask the Minister and the Bill team to remind themselves of Articles 5 and 8 of the UNCRPD, which mandate such consultations.

[Baroness Hollins]

This needs emphasis because of the culture of care that we have in this country. There is still such a paternalistic attitude towards the person, that not to emphasise it is to miss the point.