Health: Pancreatic Cancer Treatment

Baroness Finlay of Llandaff Excerpts

Wednesday 19th December 2018 Lords Chamber

[Lord O’Shaughnessy]

I agree with my noble friend and am grateful to her for raising this topic. The truth is that outcomes of pancreatic cancer are very poor, and have not improved, as she said. We are determined to change that through a number of routes. The Prime Minister has committed herself and the Government to improving early diagnosis of cancer, so that more cancers are caught earlier, which will be critical for those often caught at a late stage, such as pancreatic cancer. The faster diagnostic standard that I mentioned will help, as will a series of rapid diagnostic centres that have been rolled out around the country. I take the point that we need to do a lot more, and the NHS long-term plan gives us an opportunity to do that.

[Baroness Finlay of Llandaff (CB)]

Can the Minister inform the House how access to treatment will be rapid, given that many people with pancreatic cancer need highly specialised techniques, such as a celiac plexus block from integrated specialist services, but who are currently at the mercy of random commissioning by clinical commissioning groups, or even for the gaps to be filled by different charities? I declare an interest as a vice-president of Hospice UK and of Marie Curie.

[Lord O’Shaughnessy]

I am grateful to the noble Baroness for that question. Obviously, rapid diagnosis is important, but she is quite right that it needs to progress to treatment. The main way we are trying to address that issue is to increase the cancer workforce at every level—nurses, radiologists, endoscopists, oncological doctors, and others. Unless there are the staff to carry out those procedures, we will not get the outcomes that we want.

Mental Capacity (Amendment) Bill [HL]

Baroness Finlay of Llandaff Excerpts

3rd reading (Hansard): House of Lords
Tuesday 11th December 2018 Lords Chamber

[Baroness Jolly (LD)]

My Lords, I welcome the amendment and declare my interests as set out in the register.

I too would like to talk about the application to adults with learning disabilities, autism or dementia who also have a mental health diagnosis, and I would also like to talk about what other noble Lords have mentioned—the interface between the Mental Health Act and the Mental Capacity Act. As the Minister will have seen, Sir Simon’s review redraws the dividing line between when a person should be detained under the Mental Health Act and when they might fall under the Mental Capacity Act.

Given that the proposed new dividing line is “objection” —in other words, those not objecting fall under the Mental Capacity Act—the role of the advocate in articulating the wishes of the individual becomes paramount in ensuring that the individual is treated under the appropriate legislation. With that in mind, I have a couple of questions for the Minister. Does he agree that advocates will need to receive sufficient support and training to understand this new dividing line, as and when it comes into being? Can he also clarify who will be responsible for ensuring that the training takes place and from whose budget the funding for it will come?

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to the Government for adopting the principle of the amendment that we put forward on Report and for recognising its importance. I am glad to see that this will be in pre-authorisation reviews and to hear the assurances that it will act as a trigger for all types of reviews and will be put into the Bill when it goes to the other place.

I also recognise that the Minister has touched on staff induction, which will need to include training on liberty protection safeguards and cover when the review should trigger further action. However, I seek a categoric assurance from the Minister that the code of practice will state that staff will have the full protection of whistleblower legislation whenever they raise a concern, even if, for whatever reason, it does not proceed to initiating a review. I was grateful that during our meetings the Minister openly discussed the possibility of vexatious triggers, although I estimate that these would be very few and that triggers for reviews would involve legitimate concerns about a person’s welfare.

I also seek assurance that in its inspections the Care Quality Commission will be asked specifically to check that all staff know that they can request a review to be triggered and that they know that they will be protected. In addition, the responsible body, whenever asked to undertake a review, will need to keep a register of all such requests so that an emerging pattern of several requests coming from an institution will trigger a more major review into the type of care provided for everyone there.

One of the difficulties I anticipate arising at the interface between the Mental Health Act and the Mental Capacity Act is over the principle of objection. Among this cohort of people, objection may not be active; it may be passive. Sitting quietly, being withdrawn and being unhappy should be enough objection for people to consider whether the person should have been placed somewhere different or whether the conditions of their liberty protection safeguards should be altered. I have the impression that the type of objection envisaged in the Mental Health Act review was much more active than this type of passive objection, which could be interpreted as consent.

The other worrying aspect relating to this Bill and to the entire mental health review is the acute shortage of accommodation for people, both in the short and long terms. There is a shortage of suitable accommodation for people in crisis and of long-term accommodation that can meet people’s needs. Some are therefore accommodated in places not really adequate for their needs, but there seems to be no other option.

I repeat my gratitude to the Minister for having listened and brought forward this government amendment, and for all the other amendments that have gone into the Bill and brought about substantive changes. I look forward to hearing those reassurances in his response.

[Baroness Watkins of Tavistock (CB)]

My Lords, I concur with what other noble Lords have said and ask the Government to take one more look at the remaining conflict of interest relating to independent hospitals. It appears they will be able to employ their own AMCPs and, as the responsible body, authorise the deprivation of liberty of people in the hospital. This could pose a huge conflict of interest. The team has taken a great deal of trouble to remove this in the care home setting, and it seems it would be relatively straightforward to do so for independent hospitals. I fully support the amendments outlined today.

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[Baroness Barker]

My Lords, I do not want to detain the House but I have one or two important things to say. First, the House owes a debt of gratitude to the ministerial team for their work in getting us to this point. The noble Lord, Lord O’Shaughnessy, should take a great deal of the credit for enabling all the things he listed as achievements of the House, going forward. Obviously, the Bill leaves us in a much better state than when it arrived.

There was one contribution by a Member of your Lordships’ House that we have not acknowledged but should: that of the noble Baroness, Lady Browning. She has not been able to take part in many of our debates but she made an important contribution when she stood up and said that the Bournewood gap still exists. For all our work, it does, and it will continue to exist until such time as we sit down and really consider mental health and mental capacity legislation, including who makes the decisions about who comes under what piece of law. Until we sort out that gap, people will still be deprived of their liberty. We can call it by a different name, but they will be.

I will ask the Minister to reflect on one thing. Nobody came to this legislation believing that DoLS had to be preserved. Everybody knew that it was wrong. Everybody understands that we need to make greater and better use of the limited professional resources for overseeing the lives of people detained for one reason or another. We should listen to the noble Baroness, Lady Browning, and reflect on what else Parliament may have to do over the next five, six or seven years to make sure that the gap is addressed once and for all so that people are not wrongfully detained.

[Baroness Finlay of Llandaff]

My Lords, I will very briefly add my thanks to the Minister, the noble Baroness, Lady Stedman-Scott, and the Bill team, for listening. I also thank everyone from outside who brought their own experience, either individually or as part of a professional group, a voluntary sector group or the care home sector. I thank personally those in the Welsh Government who arranged meetings for me and also brought expertise, coming from a different health service framework. That was important because this legislation must apply across England and Wales. So I add my thanks to others.

[Baroness Thornton]

My Lords, I hope this is the final remark. This is indeed the place where, as the noble Baroness, Lady Murphy, said, we all say how wonderful we are; and I think we probably are. The Minister has set the homework that the Commons needs to undertake to get this Bill into even better shape; it needs to consider length of renewal periods, the interface with Simon Wessely’s review, the role of IMCAs, remaining conflicts of interest, impact assessments and implementation, and indeed, the issue of the definition of deprivation of liberty, which the Minister has undertaken to tackle. It also needs to discuss money, budgets and so on, as we have not done so during the passage of the Bill.

I have a few thanks to add to those of other noble Lords. First, I thank the organisations that have given us so much support during the passage of the Bill. If noble Lords cast their minds back to the summer, we were thrown into this Bill at very short notice, as were those organisations. I thank Mencap, VoiceAbility, Mind, the National Autistic Society, the Alzheimer’s Society and the Relatives and Residents Association. I must also mention Lucy Series at Cardiff University, who provided some fantastic briefing.

I thank colleagues from across the House who put things on hold over the last few months to respond to the challenge of this Bill. Indeed, the noble Baroness, Lady Jolly, and I were exchanging emails while we were on holiday at the end of the summer. I thank the Minister and the Bill team for their work. I thank the Minister for listening and for always being available. If I am honest, I think that members of the Bill team might have been on a bit of a learning curve about how to deal with legislation in the Lords, but they eventually seemed to get it. We are much nicer here when it comes to dealing with Bills—but Bills are hard work for everybody involved. Finally, I thank my own team. In the Chamber I thank my noble friends Lord Hunt, Lord Touhig and Lady Wheeler, as well as my noble friend Lord Cashman for his support in the early days. Outside the Chamber I thank Molly Critchley and Bernadette Daly, who have been absolutely brilliant. We will meet our Commons team tomorrow to talk about what we think they need to do.

Health: Cancer

Baroness Finlay of Llandaff Excerpts

Thursday 29th November 2018 Lords Chamber

[Lord O'Shaughnessy]

I do agree with that point, and indeed it was one of the policies announced by the Prime Minister in October. Of course we need to make more progress on early diagnosis. One-year survival rates have improved in the past 10 years but we still lag behind our continental neighbours, as we have done for decades. The noble Lord mentioned GP referrals, which have been in the news this week. The threshold for referrals from GPs to specialist cancer doctors has been reduced in line with the NICE guideline. The consequence has been that in the past seven years, the number of people referred to a specialist cancer doctor has increased by 1 million—that is, an increase of 115%. Therefore, we are seeing more referrals at an early stage. We are seeing many more appointments and of course those will feed through over time into our survival figures.

[Baroness Finlay of Llandaff (CB)]

My Lords, what is the Government’s estimate of the funding needed for better radiological equipment; to train radiographers to be able to report, given the shortage of radiologists; to develop AI, given that the diagnosis of malignant melanoma using AI has been shown to be as accurate as diagnosis by a dermatologist; and to invest in pathology services? Without quantifying the amount and making sure that NHS England and CCGs sign up to these things, I worry that our diagnostic facilities will never catch up with those of other countries.

[Lord O'Shaughnessy]

The noble Baroness pinpoints some really important issues that we need to deal with. The good news is that the number of radiographers has increased by 3,500 in the last eight years, but of course we need to do more and the cancer workforce plan includes plans to recruit more specialists. Greater investment in equipment is taking place, the Prime Minister has announced investment in specialist cancer centres, and the first proton beam therapy centres in this country have now opened. Finally, AI has extraordinary benefits. It is now able to diagnose some tumours better than most expert specialists. We have made some commitments in this area through the expansion of digital pathology and radiology, and we will be doing more.

Mental Capacity (Amendment) Bill [HL]

Baroness Finlay of Llandaff Excerpts

Report: 2nd sitting (Hansard): House of Lords
Tuesday 27th November 2018 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, Amendments 49, 85 and 87, which are in my name, complement Amendment 29—which, like others, I strongly support. Information to the family and those who care deeply about the welfare of the person is the cared-for person’s safeguard against exploitation or bad care or simply having their needs ignored. It is paramount that families have a role to play in the care planning of their relatives, not least by giving them the option to stay fully informed and to object to the proposed plans if they are unsatisfied.

When an assessment happens at one point it is easy to collate all the information, get it signed off and then forget that every day until the scheduled review is a day to be lived by the cared-for person. If the conditions laid out in the authorisation are not adhered to, if the person is not empowered as much as possible to be both mentally and physically active, gradual inactivity and a slipping decline set in.

The care itself is important. Certainly, quality of care will vary between care homes and within them, but monitoring the care plan is central to ensuring that the cared-for person’s dignity is maintained. Their quality of life depends on how they are treated day in, day out, as well as whether they receive care in a way that enhances their personal dignity or, shamefully, they are treated as though they are of less worth. It is therefore imperative to ensure that the cared-for person is placed at the heart of the LPS authorisation process, which is why I want all those consulted in the initial process, as laid out in paragraph 17(2), to be able to access easily the care and support plan. Being able to apply for it is not enough; many people may not even know that they are able to apply to look at it. Relatives will notice if the care plan states that something is not happening and question why.

The care plan and authorisation record must be available to the cared-for person, enabling them to keep track of what is supposed to be happening. For those with fluctuating capacity or less severe impairments, the sense of control and empowerment that this would give is completely in line with the ethos of the Mental Capacity Act. Where the cared-for person cannot monitor their care plan, they can still know, even in their short-term memory, whether they are getting what they should get. Those with specific responsibilities for the cared-for person’s welfare—such as the nominated representative, the donee of the lasting power of attorney for health and welfare or the court-appointed deputy—must have both the authorisation statement and the accompanying care plan.

The care plan must also be provided to the care team in the cared-for person’s place of residence, because where such a place is supported living, I am concerned that those who provide support and are not on a professional register may find that they are not given all the details. I strongly support Amendment 29, introduced so clearly by my noble friend Lady Watkins. People must know what their rights are and what will happen. This will not be costly; it will be far less costly than the court cases that are likely to come if the requirement to provide information about all aspects of the process and plan is not in the Bill.

Amendment 87 deals with what to do in the event of a dispute. It requires an AMCP to be appointed to explore the reasons for the dispute and assess the situation independently. If agreement cannot be reached, independent mediation must be sought before resorting to the adversarial processes of going to court. A group of family law solicitors has been working for over a year to develop a system of mediation to be used before a court proceeding in the Court of Protection. This type of dispute, where everyone agrees that a solution must be found in the interests of the cared-for person, lends itself well to mediation; it would be swifter, cost less than any court action and be far less traumatic for all concerned. If the principle of dealing with dispute is not in the Bill, can the Minister reassure the House that it will be dealt with in the code of practice?

Before I finish, I urge the Minister to recognise the strength of feeling about people needing to be given information about their rights. If he will not accept these amendments, will he agree to bring the lead amendment in this group back as a government amendment at Third Reading? Requiring adequate information-giving must be in the Bill; it cannot be left to the code of practice, nor deferred to the Commons stages. This is one of the most essential planks in ensuring that the care that should be given is given.

[Baroness Wheeler (Lab)]

My Lords, we on these Benches strongly support the key amendments in this group. Amendment 29, to which my noble friend Lady Thornton added her name, would ensure that the responsible body has a duty to make sure that the cared-for person or the person representing them in an advocacy, professional or other capacity fully understands the rights of the cared-for person for whom deprivation of liberty is proposed, and the rights to challenge. Those rights also include specifically the rights to an independent and professional assessment, to a review of the LPS arrangements, to advocacy and support and to be able to challenge the LPS authorisation in court.

The noble Baroness, Lady Watkins, made a strong case for rights to information to be on the face of the Bill, ably following on from the interventions of the noble Baroness, Lady Hollins, during its previous stages. She spoke on the importance of this issue, particularly in respect to people with learning difficulties, and the need, wherever possible, to take steps to increase the cared-for person’s capacity to understand what is happening to them and to have as much involvement as possible to help them determine their wishes and feelings.

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[Lord O’Shaughnessy]

On the noble Baroness’s first point, of course there is nothing to stop us setting out anything in the code of practice. The concern would be whether there would be a clash between what was set out in the Bill and what was set out in the code of practice or in Article 5. That is one of our concerns and it is for that and other reasons that unfortunately we are not able to support that amendment.

[Baroness Finlay of Llandaff]

Does the noble Lord agree that one of the differences here between Article 5 rights normally and this group of people is that these are people who lack capacity to make their own decision, which is why they are being deprived of their liberty? They are particularly vulnerable and unable to speak up for themselves and depend on others. Therefore, if we have something in the Bill—and it may be that the wording in Amendment 29 is not right—brought back by the Government at Third Reading, we would know that there is an explicit right to information to be given to people when they lack capacity, as well as giving it to people when you have done everything to confirm that they have capacity for it.

[Lord O’Shaughnessy]

I recognise the point that the noble Baroness is making. As I said, our belief is that the rights that currently exist, and are in no way amended or reduced as a result of the Bill, provide what she is asking for. Unfortunately, I am not able to give a commitment that we will be able to return to this issue at Third Reading.

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Moved by

[Baroness Finlay of Llandaff]

33: Schedule 1, page 10, leave out lines 14 to 16

[Baroness Finlay of Llandaff]

My Lords, I am most grateful to the Government for having changed the role of the care home manager. All the changes in the Government’s amendments have been welcomed. Almost all of my amendments in this group have fallen away, but I seek reassurance from the Minister that the authorisation process will include inspection of the proposals and conditions as set down in the care and support plan. This is because the necessary and proportionate test can be understood only in the context of the way that the care will be provided and how it will meet the wishes and feelings, as well as important information gleaned from the consultation process. The helpful diagram that was attached to the Minister’s letter of 15 November shows the factors, but I am unclear how they will be contextualised for the authorising body without the authorising body having access to a copy of the care and support plan. It is for that reason that I decided to speak to this group of amendments. I hope the Minister will be able to give me reassurance. This is about the process whereby the authorising body will know that it has accurate information that will affect the day-to-day care of the person. I beg to move.

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[Baroness Finlay of Llandaff]

I am most grateful to the Minister for that clear reassurance. I reiterate our gratitude that the Government decided to change the role of the care home manager, making most of the amendments in this group redundant. Therefore, I beg leave to withdraw the amendment.

Amendment 33 withdrawn.

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Moved by

[Baroness Finlay of Llandaff]

35: Schedule 1, page 10, line 32, at end insert—
“12A The responsible body may not authorise arrangements if an Approved Mental Capacity Professional has concluded that the arrangements should not be authorised.”

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[Baroness Finlay of Llandaff]

My Lords, Amendment 35 is a failsafe mechanism that will save a great deal of court time in the future and make it clear where the process has halted if things go awry. The failsafe is that an approved mental capacity professional—AMCP—can veto authorisation if the AMCP has grounds to object. However, it is important that the AMCP cannot authorise arrangements. In other words, the default position is to preserve liberty and not to impose restrictions on a person without a very sound reason. It is important that we are explicit about the extent of the AMCP’s powers, whether on the face of the Bill or in subsequent regulation, as we will need to be more prescriptive about these powers in the statutory code of practice than we have been to date, for the sound reason of flexibility and the independence of the AMCP.

The reason I tabled the amendment and feel it should be in the Bill is that there is a risk that local authorities facing financial stringencies might be inclined to authorise arrangements that are less costly, thereby revealing an inherent conflict of interest where a local authority is funding a person’s care. We have had many debates about conflicts of interest in relation to care homes but we must remember that in a whole-health and social care system which is under financial pressure, all kinds of little conflicts and pressures can creep in.

The other amendments in this group specify the different criteria whereby an approved mental capacity professional must conduct the review. I am not going to go through each line of these amendments—they are quite self-explanatory—but they show the importance of that degree of independence before taking the major step of imposing restrictions on somebody’s liberty and conditions under the new liberty protection safeguards process. I beg to move.

[Baroness Barker]

My Lords, I will speak briefly to Amendment 77 in my name, which was drawn up because of the experience of many relatives. I make particular reference to the case of Stephen Neary, where relatives had to deal with local authorities which were telling them wrongfully what their position was in law. A great deal of responsibility was put on to the relatives to oversee the right interpretation of the law. This amendment seeks to ensure that, where they are acting in the best interests of someone who is cared for, relatives would be able to meet an AMCP and trigger their involvement. In our earlier discussions, there was an underlying sense on the Government Benches that the involvement of professionals can often be an unwelcome intrusion into families. In fact, many of them do not find that at all. Many find that the first occasion when they come into contact with a professional is the point at which all sorts of information and understanding becomes available to them in support of their loved ones.

Although I am not seeking to press this amendment today, I hope that the Minister might think about it and, if he is disposed to do so, make some supportive statements.

[Lord O'Shaughnessy]

I am grateful to the noble Baronesses for tabling these important amendments. It is critical to get right the role of approved mental capacity professionals and when they should review cases under the liberty protection safeguards system. AMCPs will be a vital part of the system. They will be qualified, knowledgeable and experienced professionals. It is intended that they will act independently, both of the care provider and the responsible body, and that they will make a determination on proposed arrangements after meeting the person and reviewing relevant information.

Amendment 35, tabled by the noble Baroness, Lady Finlay, explicitly prevents the responsible body overriding a determination of the AMCP. The responsible body is responsible for approving the authorisation, but an AMCP is required to complete the pre-authorisation review if it is reasonable to believe that the person objects to the arrangements. The AMCP can also conduct the pre-authorisation review in other cases. Where an AMCP conducts the pre-authorisation review they will determine whether the authorisation conditions are met.

The critical issue here is the consequences of the AMCP determining that the authorisation conditions have not been met. We are absolutely clear that the responsible body should follow the AMCP’s determination, and indeed any responsible body that did not do so would be taking on a significant legal risk. The responsible body might believe that it has a good reason to disagree with the AMCP’s assessment, but in that case the proper course of action would be to discuss this with the AMCP. If the responsible body then tried to override the AMCP’s decision, we would expect the AMCP to raise concerns—first, with the responsible body itself. If the local authority is the responsible body, the concern can be escalated to the Local Government Ombudsman, and if a CCG is the responsible body, it can be escalated to the regional director of commissioning in NHS England. Concerns regarding NHS organisations and independent hospitals can also be raised directly with the CQC in England or Health Inspectorate Wales. Therefore, I hope that noble Lords are reassured that mechanisms are in place to stop any unjustified behaviour on behalf of responsible bodies.

Amendment 77, tabled by the noble Baronesses, Lady Barker, Lady Finlay and Lady Jolly, makes explicit that a pre-authorisation review must also be conducted by an approved mental capacity professional if relatives or those with a genuine relationship to the person object to the arrangements, if there is restriction on contact, if the care home manager or responsible body considers the case to be exceptional, or if the arrangements are for mental disorder or the arrangements include covert medication.

The Government agree that families and carers play an important role in liberty protection safeguards. As the people who know the cared-for person best, they will often know what the person’s wishes and feelings are and whether they do, or would, object to what is being proposed. The Bill already states that a pre-authorisation review must be completed by an AMCP if there is a reasonable belief that a person objects to residing in or receiving care and treatment at a particular place. We are clear that an objection raised by someone with an interest in the cared-for person’s welfare can also give rise to a reasonable belief that the person objects, and this will be confirmed and clarified in the code.

We all agree that deprivation of liberty is a serious matter, especially when accompanied by measures such as high levels of restriction, covert medication and restrictions on contact. Such measures should be put in place only following a best-interests meeting and in some cases will require a court application. This is confirmed in the current MCA code of practice and will continue to be a key aspect of the new code.

I agree that in some circumstances such cases should be considered by an approved mental capacity professional. The Bill expressly allows for a pre-authorisation review to be completed by an AMCP in other cases, as is clear from paragraph 19(1). However, although the Bill is clear about how the lodging of an objection will lead to a review by an AMCP, I have heard clearly from noble Lords and stakeholders that there is a concern about referring appropriate cases to an AMCP. I hope that noble Lords will be glad to hear that I have been persuaded that we need to clarify on the face of the Bill that other cases can be referred to an AMCP.

In the previous day on Report, I stated that we would revisit, in the Commons, the issue of referral to AMCPs, specifically regarding those in independent hospitals. I can now confirm we will be looking at this issue more widely, including the specific concerns raised in the debate and in the amendment, as part of our considerations for government amendments in the other place. I look forward to working with all noble Lords to make sure that we get this right.

I turn briefly to Amendment 46 in the names of the noble Baronesses, Lady Thornton and Lady Barker. The amendment would mean that in care home cases the statement to the responsible body must indicate whether any person interested in the person’s welfare is satisfied that the person does or does not object. I understand that the intention here is to create a mechanism for those with an interest to be able to raise objections. I have already said that the Bill specifies that the statement must reflect any consultation that has been completed with those with an interest in the cared-for person’s welfare, and our later amendments will also make it explicit that that includes the person themselves under the “duty to consult” government amendments. The IMCA and the appropriate person will also have a role in reflecting these concerns.

To conclude this group of amendments, Amendment 104 states that a review is triggered if a person with an interest in the cared-for person’s welfare has raised concerns. As I said, that will be the case. Amendment 109 would change the Bill to reflect the effects of Amendments 34 and 104.

I hope that in answering points raised on these important issues, I have been able to give two kinds of reassurance. The first is that the process of triggering a review will be clearly set out. The Bill as it stands, as well as amendments that we are making, will mean that anybody with an interest in a person’s welfare will be able to trigger a review and that will lead to a consideration by an AMCP. Secondly, in the rare cases where there is a dispute between an AMCP and a responsible body, there will be avenues to escalate such a disagreement to mediation and resolution.

Furthermore, we are determined to get the role of the AMCP right. We think it is necessary to go beyond specifying that those in independent hospitals can see an AMCP and to think of other cases as well, and we are intending to bring forward amendments at the Commons stages of the Bill. I hope that that provides the reassurance that the noble Baronesses are looking for and that the noble Baroness, Lady Finlay, will be prepared to withdraw her amendment.

[Baroness Finlay of Llandaff]

I think I can speak on behalf of all noble Baronesses who had their names on these amendments. We are most grateful to the Government for listening and find all that the Minister said in his speech in response to this group of amendments reassuring and positive. We look forward to working with the Government as these new criteria evolve. I beg leave to withdraw the amendment.

Amendment 35 withdrawn.

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[Baroness Barker]

My Lords, Amendments 61 and 67 return to two issues that I and the noble Baroness, Lady Finlay, raised at earlier stages in our debates.

Amendment 61 pertains to what happens when the circumstances or condition of a person deprived of their liberty change. As we have said on previous occasions, that may be someone with dementia whose condition deteriorates or, as in the cases cited by the noble Baroness, Lady Finlay, it could be someone with a brain injury whose condition improves and who regains some of their capacity. It is the intention under the Bill that deprivations of liberty will last considerably longer than under current circumstances.

I seek an assurance that there is an ongoing duty on care home managers and those responsible for arranging and carrying out assessments to revisit people whose conditions are likely to change to ensure that their detention is still the least restrictive option.

In Amendment 67, I use the word “conditions” in a completely different sense. As has been said, under DoLS people carrying out assessments and authorisations have the right to say that it would be in order to detain someone and deprive them of their liberty provided that certain conditions are met. The noble Baroness, Lady Finlay, has given us memorable examples of what those conditions might be. However, in truth, the most common condition concerns medication and reviews of medication.

The Government have consistently said that the Bill does not alter that—and that, as ever, the matter will be dealt with in the code of practice—but I am simply asking for a statement from the Minister setting out the legal force by which it will be possible in future for those who are responsible for depriving people of their liberty to do so on the basis of conditions which must be met. The importance of those conditions— particularly when we talk about DoLS in the community —is that they can make something a least restrictive option and therefore admissible.

It is for that reason that I have returned to these two amendments today, and I beg to move.

[Baroness Finlay of Llandaff]

I have added my name to Amendment 61 because it is important that we recognise that no one has a crystal ball—we cannot predict what is going to happen. Even people we think might be seriously impaired, as the noble Baroness, Lady Barker, said, can sometimes improve and it can be quite unexpected.

It is inconceivable that the course of a person’s illness will match the timetable of annual reviews—that is not the way bodies behave when they have an impairment; if someone does not improve within an expected time frame, they must be reassessed. Otherwise, there is a real possibility that they will languish with inappropriate restrictions on their liberty when such restrictions are no longer necessary or proportionate. In fact, in the case of medication reviews, they may have become inappropriate because they may be on medication that is unnecessarily a sedative.

Of course, those who deteriorate will also need phased authorisations and reviews. Without the Government laying out explicitly this degree of uncertainty in the timeframe and the fact that wherever there is expected to be uncertainty, it should be specified, I fear that there will be pressure to define the amendment’s principle by going to court. We will then end up with a court precedent that is not necessarily applicable to a lot of people, but which they will get caught up in anyway. We will end up with a risk-averse response. I hope the Government will be able to accept, if not the actual wording of the amendment, the principle that the timeliness and the timeframe need to be specified wherever possible to avoid that confusion.

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[Lord O’Shaughnessy]

My Lords, before introducing these amendments, I thank the noble Baroness, Lady Barker, for accepting my explanation on the previous group. I am conscious that we need to explain this in more detail, but I am grateful to all noble Lords and to the noble Baroness, Lady Thornton, for not pushing this point. This is something that we can clarify to get to a better system.

The amendments in this group are clearly central to the Bill, because they are all about putting the cared-for person at the centre of the new liberty protection safeguards. Noble Lords have been at pains to highlight a concern that the cared-for person is not listed explicitly as a person to consult. That has clearly always been our intention, but it is nevertheless quite right that that should be explicit in the Bill.

Amendment 71 clarifies that the cared-for person must be consulted as part of the consultation under new paragraph 17. Amendment 63 sets out that the person’s wishes and feelings must be considered as part of the determination that the arrangements are necessary and proportionate. Amendments 110 and 111 update other parts of the Bill to reflect the new explicit consultation requirement and to make some other minor drafting changes.

The consultation required by the Bill is important in establishing the cared-for person’s wishes and feelings, and identifying objections to the arrangements. It is also an important way of involving the person and their families in the process, and making sure that the liberty protection safeguards authorisation is something that happens not just to them, but with them. It has always been our position that the person should be consulted, but it is quite right that we set this out explicitly. Through these amendments we have also been explicit that the person’s wishes and feelings must be considered as part of the necessary and proportionate determination.

Briefly, Amendment 68, tabled by the noble Baronesses, Lady Finlay and Lady Jolly, would also ensure that this point is considered. I hope they will feel that the Government’s amendments have dealt with their issues and that they will feel happy not to press their amendments.

[Baroness Finlay of Llandaff]

I am looking to the noble Baroness, Lady Jolly, because I am sure she will agree with me. I am grateful and happily give way to the government amendment, which does what we wanted to do. We will not do anything with our amendment. I thank the Minister for his clarifications.

[Lord O’Shaughnessy]

I thank the noble Baroness for her agreement. I beg to move.

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Moved by

[Baroness Finlay of Llandaff]

76: Schedule 1, page 13, line 15, at end insert “, or
(c) there is dispute between the responsible body and the registered health or social care professional who has carried out the review under paragraph 20.”

[Baroness Finlay of Llandaff]

My Lords, I declare an interest. Some years ago I was involved in helping the police prosecute people who were responsible for care but who were delivering terrible abuse in what was then termed an EMI home. A care assistant, encouraged and supported by her friend who worked on the domestic side, thought, “This wouldn’t be good enough for one of my relatives”. As we explored the cases, families in their statements commented on all they had noticed but said they did not feel able to raise concerns, let alone complain. They feared that their relative in the home would be victimised if they said anything or raised any questions. It was case records that revealed repetitive patterns of entry that gave the clues to support the statements that relatives gave to the police and provided evidence against those abusing these people, which led to a successful prosecution. The Minister has already said that the triggers for an AMCP review will be expanded. We look forward to working with him and officials on this. That should cover Amendment 76 when there is a dispute. Amendment 74 has, of course, fallen through pre-emption.

I shall focus on Amendment 76A, because it supports the whistleblower and ensures an independent review. Without that, we will fail those who need protection and leave whistleblowers with no option other than to stay silent and say nothing—or, if they can pluck up the courage, go to the CQC or the police, with all the disruption, expense and risk of losing their job that that involves. It would also mean a delay in alerting when things are not as they should be. The other amendments in this group concern other ways of triggering a professional expert review. I know that we have legislation designed to protect whistleblowers, but for domestics—cleaning and kitchen staff—and care assistants, who are often those who spend most face-to-face time with people, who need the job and may not be able to find alternative employment where they live, it takes enormous courage to say that things are not right. Sadly, it is more courage than many people can pluck up.

A Guardian report, published on Friday, cites examples of “terrible indignity and neglect” in for-profit care homes across the country. Whistleblowers have risked their jobs and livelihoods to report cases of,

“inappropriate and disproportionate use of physical restraint”,

on residents with autism, and carers failing to manage medicine safely. In this article, Eileen Chubb, founder of Compassion in Care—a charity that campaigns on behalf of whistleblowers for better levels of care—was quoted as saying:

“We have seen first hand the appalling consequences of poor care … company after company making millions whilst on the frontline vulnerable people are left without the basics to sustain life”.


Carers who break the silence surrounding abuse, such as the whistleblowers at the home cited, deserve protection.

Even if a care home is a good home and receives a good rating from a CQC inspection, relatives may visit only intermittently and may not be aware that the care that they think is being given to their relative just is not happening for them. They will not be aware of the minute-to-minute, hour-to-hour aspect of a person’s care. It is the staff there for hours on end who can benchmark that care. They may realise that the person has become increasingly withdrawn and increasingly less communicative, and perhaps cries at night and seems very unhappy. The staff must confidently be able to ask for a review without prejudice.

This amendment will play an important role in giving protection both for residents and for those who call for a review. It calls for a review because it is far less threatening for somebody who has a concern to be able to ask for an independent review from an AMCP who can come in and assess what is going on—they do not feel that they need the body of evidence to make an accusation of malpractice. That is why this should be in the Bill, even if all the other ways of triggering a review are consigned to the code of practice. I feel quite strongly that when staff feel that something is not right and want to say so but their seniors are not recognising it, they must have the ability to protect the cared-for person, because the cared-for person is so vulnerable. I beg to move.

[Baroness Thornton]

My Lords, right from the beginning of this Bill—at Second Reading and in Committee—concerns have been expressed across the House about how the interests of the cared-for person can be ensured through the process of using the AMCP when that person is at their most vulnerable and may not be articulate at all. The noble Baroness, Lady Finlay, articulated exactly what we are saying. Amendment 76A, in my name and those of the noble Baroness, Lady Barker, and the right reverend Prelate the Bishop of Oxford, is an essential fail-safe that we believe needs to be in the Bill.

Like the Minister, we have sought across the House to prioritise the issues that we thought were most important for the cared-for person. I think we have come through rather well in improving this Bill together, and mostly without having to resort to Divisions. I hope that the Minister will accept Amendment 76A, because it is certainly in line with the aspirations that he has expressed to the House about safeguarding the cared-for person. If he is not prepared to do that, certainly on these Benches we hope that the noble Baroness, Lady Finlay, will seek the opinion and support of the House, because it is certainly there.

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[Baroness Finlay of Llandaff]

I am most grateful to the Minister for realising the seriousness of this issue and that our current whistleblowing policies are inadequate. I do not share his concern about vexatious reporting because if you got such reporting from a staff member, it would be pretty obvious pretty quickly. The review would have happened and if one person is better protected, it is far safer than many people being inadequately protected. I accept that my drafting—I am grateful to the Public Bill Office—may not be perfect and because the Minister will come back to this at Third Reading, we will have a meeting and then be able to bring back an amendment.

[Baroness Thornton]

May I seek clarification from the Minister? He said that he would come back to Amendment 76A. Is this about Amendment 76 or Amendment 76A?

[Lord O'Shaughnessy]

It is Amendment 76A.

[Baroness Finlay of Llandaff]

I am grateful to the noble Baroness, Lady Thornton, for clarifying on the record that we are talking about Amendment 76A. With the caveat that the meeting will include all of us who have been involved in and feel so concerned about this matter, I will withdraw the amendment, knowing that we will bring something back at Third Reading in this House and not leave it to the code of practice or the Commons. I beg leave to withdraw the amendment.

Amendment 76 withdrawn.

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[Baroness Finlay of Llandaff]

My Lords, I support the amendment. I would like to put an illustrative example before the House, although I know this is Report so I will be very brief. I heard recently about someone who had sustained a head injury, living in a place where he received care, who got very aggressive whenever people suggested that he should attend to his own personal hygiene or tidy up. Any type of reasoning or persuasion completely failed. The solution was not to restrict what he did at all but rather just to walk in, put a vacuum cleaner in the room and go out again. He seemed to then go into an automatic mode of vacuuming, cleaning up, tidying up and then washing, and everything was sorted, including his personal hygiene.

I mention that because it is important for us to realise, when we are thinking of restrictive options, that sometimes you need to be imaginative to find the least restrictive option for people. Letting people out a certain amount can be far more effective than being so risk-averse that you limit what they can do.

[Baroness Thornton]

Yet again, the noble Baroness, Lady Finlay, brings us a helpful example. I put my name to the amendment and we support it. It is part of a suite of amendments about keeping the cared-for person as far as possible empowered to make their own decisions, which must be intrinsic to the Bill. The amendment would ensure that the least restrictive method is always used.

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[Lord O'Shaughnessy]

I am grateful to the noble Baroness for moving the amendment. Obviously, it is worth having an opportunity to restate that we clearly agree with her that it is necessary that anybody with an interest in a cared-for person’s welfare is able to trigger a reasonable request or, indeed, an objection on their behalf that constitutes a reasonable belief. That is something that we have discussed in terms of people who are supportive, such as family members, appropriate persons, IMCAs, and so on. Clearly, we have agreed to talk further about the role of whistleblowers and staff members.

I can reassure the noble Baroness that what she is asking for is already contained in numerous places in the Bill. The amendment deals specifically with paragraph 31(3)(b) of Schedule AA1. It is implicit in the description,

“person with an interest in the arrangements”,

that that includes people who have an interest in the cared-for person’s welfare. That is the purpose of the Bill. As I have made clear, any objection from someone who has an interest in the person’s welfare constitutes a reasonable belief, as set out elsewhere in the Bill. I am grateful for the opportunity to return to this issue and hope that I have reassured the noble Baroness that this is absolutely included in the definition.

[Baroness Finlay of Llandaff]

Before the Minister sits down, will he confirm that “interests” does not include the interests of the care home manager, where it may be a cheaper option, and that the interests of the cared-for person are definitely at the centre of the clause as written? I want to be absolutely sure that it cannot be misinterpreted in the future to mean “interests” in a much broader sense than the interests of the cared-for person.

[Lord O'Shaughnessy]

That is a very valid question. We have tried to deal with the conflict issues in other amendments. It is absolutely not the intention that that ought to be misused for the purpose referred to by the noble Baroness. I will need to get specific clarification about the implications of this, but I can reassure her that that is not the intention of it. If it needs to be clarified in a letter to noble Lords and, subsequently, in a code of practice then that is what we will do.

Organ Donation (Deemed Consent) Bill

Baroness Finlay of Llandaff Excerpts

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

[Baroness Finlay of Llandaff (CB)]

My Lords, I congratulate the noble Lord, Lord Hunt of Kings Heath, on bringing this important Bill to this House. It will bring organ donation legislation in England in line with that of Wales and Scotland for the benefit of all. I should declare that I was involved in the early stages of consultation in Wales, and I introduced the Kidney Transplant Bill in 2008 for presumed consent to donate one kidney, provided there was no evidence either from a central registry or from the dead patient’s relatives that he or she had opted out of being a potential donor. My Bill did not progress but I continued to have an involvement in the developments in Wales.

Many years ago, I conducted a study of bereaved parents and was struck by the comfort that donation gave them after their terrible, tragic loss. Some regretted not being asked about transplant donation and one regretted having declined.

Laws send social messages. When we were considering such legislation in Wales, we undertook very widespread consultation and carefully considered the pros and cons. I hope that England can now learn from our experience, because all the planning and consultation was essential to the success of the legislation when it came into force.

I want to cover how we went about it, the results of our process overall and things that I hope the Minister and the team will implement to take this forward. I am grateful to Professor Vivienne Harpwood from Cardiff University school of law for giving me the latest data. She has worked on this issue for years. I also pay tribute to the noble Baroness, Lady Randerson, whom I would like to call a friend—she is indeed a friend—for the important role she has played in Wales.

A tremendous amount of careful thought and planning contributed to the success of the legislation: there was very careful consideration of the ethical issues; we studied the outcome of similar legislation in other countries and consulted with many sections of society, including faith groups and ethnic minority groups to help us understand their sensitivities, respect their views and address their concerns; and numerous meetings and consultations took place. Although the Human Transplantation (Wales) Act obtained Royal Assent on 10 September 2013, the system did not begin to operate until December 2015 to allow adequate time for people to absorb and understand essential information about the new law.

As we had decided to introduce a “soft” opt-out system, we realised that it was necessary to have a large-scale information/education process, during which families were encouraged to discuss their wishes and people were urged to make their views about organ donation known to their relatives. Every household in Wales received carefully designed bilingual written information on more than one occasion, and there was an extensive media campaign, roadshows in supermarkets and other places, and a national countdown clock. This campaign informed people clearly that they could either opt in or opt out of the organ donor register, or do nothing if they did not object but wished their family to decide. A 20-second TV advert urged, “Talk about your organ donation decision or someone else may speak for you”. It was very powerful.

By 2017, over half the adult population in Wales had talked with family about their wishes. The widespread publicity about the benefits of organ donation helped people understand the gift of life, and we saw an early rise in the number of organs donated and transplanted. We also invested in training specialist nurses in organ donation. As the noble Lord, Lord Hunt, stressed, these nurses are key to the legislation working well. They sensitively explore the family’s recall of those conversations and their feelings.

It is essential that the bereaved family are able to express their views and know that they will be respected, as the Bill before us ensures. There must never be pressure on families. They are being asked to consider donation when they are numb at the sudden loss of the person they love—their child, spouse, fiancée, partner, brother, sister or a parent. Their grief at that time is overwhelming, and they live for the rest of their lives with the events of that tragic day. They remember every word of the conversations they had, second by second. That is why a soft opt-out, as in this Bill and in Wales, is so important.

Remembering donors and thanking families with national events, such as the Order of St John services of thanksgiving, are important to recognise that they have given the gift of life. In my own family, the service honoured the man who died, bringing enormous comfort to all the bereaved, including his children.

Three and a half years after we implemented our legislation in Wales, we now have the highest combined donation rate in the UK of 80.5% after brain stem or circulatory death. Currently, England runs at 66.2%, Scotland at 63.6% and Northern Ireland at 66.7%. Donation after brain stem death now has consent rates in Wales of 88.2%, as opposed to those in England at 73.3%. Donation after circulatory death consent has also risen in Wales to 68%, compared with 59.8% in England. These figures are better than we were expecting when the legislation was going through the Assembly, and the accompanying publicity campaign might account in part for this latest good news and, importantly, that we have not had the problems or backlash predicted.

There has been a steady increase in Wales. On 1 December 2016—the first anniversary of the implementation of the new legislation—the figures indicated that 39 organs were transplanted from patients whose consent was deemed. Welsh Government reports published on the same day were accompanied by positive statements by both the First Minister and the Cabinet Secretary for Health. By February 2018, 39% of the Welsh population had opted in to donate.

When you speak to people from donor families, you realise how glad people are to have been able to transform the lives of complete strangers, despite having faced the overwhelming tragedy of losing a loved one. You realise how important the recognition of their gift is, through these services of thanksgiving and so on, as they go forward in their own lives.

I seek two reassurances from those taking this forward. The first is that the public education campaign will be as thorough and carefully planned as ours in Wales. The second is that it will be accompanied by enough intensive care beds and specialist nurses in organ donation. Families must never feel hurried, and there can be a need to maintain hydration and oxygenation while waiting for the transplant to be set up. Even those waiting for a transplant always keep the phone by them, anxiously waiting for that call to the operating theatre, but it can take some time to get there. I am grateful for the assurance given in the letter from the Minister and the noble Lord, Lord Hunt, that preferential donation, which I argued hard for in 2009, will not be jeopardised. Where a family member is awaiting transplant, and the tissue is compatible, relatives must be able to ask for that specific organ to go to that person, while other organs go unconditionally to others waiting.

On a solemn note, I hope with this Bill we will see an end to transplant tourism, where desperately poor people sell an organ—nearly always a kidney—or, even worse, organs are harvested from executed prisoners. We should follow Italy, Spain, Israel and Taiwan in legislating to confront this abhorrent human rights issue, but that is for another day.

The Bill before us today is incredibly important. It can help the 5,000-plus people waiting for a transplant to join the 50,000 now living thanks to organ donation. It is truly the gift of life, and it deserves a smooth passage.

Mental Capacity (Amendment) Bill [HL]

Baroness Finlay of Llandaff Excerpts

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

[Lord Woolf (CB)]

My Lords, I am very grateful for the expectation about my contribution to this debate, which the noble Baroness, Lady Tyler, just referred to. I am only too conscious that I shall disappoint her, but I will do my best.

First, I must disclose an interest. I have a relative whom the Bill may affect. I am also a member of the Joint Committee on Human Rights. The noble Baroness, Lady Tyler, was quite right in everything she said about the committee’s report, which has something useful to say in connection to this. I hope the Minister will agree with that. I see him nodding his head and telling me that it is so.

I shall focus on the second amendment proposed by the committee, which supplements the one moved by the noble Baroness, Lady Tyler. It is designed to limit the unintended harm caused as a consequence of the Cheshire West case, which is not easy. That harm takes two forms: first, it has resulted in a huge increase in the number of people who will be caught by the Bill; secondly, it means that people who do not need the precise benefits normally available to those in their position are dragged into that protection to their disadvantage.

I shall try to describe the persons concerned. They are people who have problems that would fall within the context of the Bill, but are residing, possibly in their home or some other institution, somewhere where they are perfectly content and well looked-after. There is no problem in their case. I do not think it necessary to expand the burdens on the Treasury caused by people in their condition by including them, unless it can be shown that there is a real necessity. Although the language of the amendment proposed by the committee, to which I am speaking, is complex, if one reads it carefully it does not give rise to any difficulties, but it could have the ameliorating effects to which I have referred. For those reasons and those the noble Baroness has given, I commend this amendment.

[Baroness Finlay of Llandaff (CB)]

My Lords, I should like to comment on these amendments. Before I do that, I thank the Minister on behalf of everyone for listening, as well as for his willingness to meet Peers and to move on the things that had caused enormous concern to many of us.

I have a couple of concerns regarding these amendments. I commend the noble Baroness, Lady Tyler, and the noble and learned Lord, Lord Woolf, for trying to get us back to a definition. I completely agree that if we do not have a definition, the matter will go to court and we will end up back in a circle that we do not want to be in. The problem I see is the non-negligible period, which will be really difficult to define. If somebody is in a confined space for even 10 minutes or a quarter of an hour, that could be absolutely terrifying for them and completely unjustifiable. We have a difficulty in trying to use time as a measure, but I understand why it is there as well.

In his amendment, the noble and learned Lord, Lord Woolf, certainly includes the principle of consent, which means that there should be information that the person has capacity and that their care and treatment are voluntary. I was a little worried, however, that his proposed new paragraph 2(1B)(d) in the amendment, which would require two clinicians to confirm in writing, rather ran counter to the principles set out in Part 1 of the Mental Capacity Act itself, Section 1(2) of which states:

“A person must be assumed to have capacity unless it is established that he lacks capacity”.


It almost turns itself on its head if you must have somebody to verify that they have capacity.

I note that in his letter to us, the Minister stressed the importance of supporting liberty as much as possible and valid consent wherever possible. Would the Minister be prepared to say that we can work on this between now and Third Reading? If we can reach a definition that seems right by then, we will have done the whole community a great service.

[Baroness Thornton]

My Lords, I thank the noble Baroness, Lady Tyler, and the noble and learned Lord, Lord Woolf, for bringing forward the amendments. I can see that the Government have a decision to make about which way to go on them.

Listening to the Joint Committee on Human Rights is always a good idea. We discussed a statutory definition during the previous stage of the Bill, when the Minister repeated that he,

“should like to take some time between now and Report to consider the opinion expressed by noble Lords and in the report of the Joint Committee about the benefits of a statutory definition”.—[Official Report, 5/9/18; col. 1849.]

I understand why the noble Baroness, Lady Finlay, is thanking the Minister already but it may be slightly premature. I know what she means, but let us wait until the end of the next day and a half. It is important that the Minister shares with us now where that thinking has led him.

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[Baroness Watkins of Tavistock (CB)]

My Lords, I support this group of amendments and I am delighted that the Minister has had his mind changed. Not using this phrase will change how people feel about their relatives who may be suffering from mental disorders. I am also optimistic that, in the longer term, using such modern nomenclature will make mental health professions more attractive to young people.

[Baroness Finlay of Llandaff]

My Lords, I also welcome these amendments; removing “unsound mind” is a major step forward. I have a couple of questions for the Minister and I hope he can clarify. I may have misheard him but I understood him to talk about head injury. It would be helpful if he could clarify that he was referring to acute head injury—or acute brain impairment of any sort—as opposed to long-term damage such as frontal-lobe damage, which can happen when you have had a major brain injury. This can result in very long-term problems and difficult behaviours, which may mean that people currently need to be assessed as subject to deprivation of liberty. Could he clarify that we are not discounting a whole group of people who, it is generally felt, benefit from being properly assessed and safeguarded?

I would also like confirmation from him on another group. In January 2015, the then Mental Capacity Act deprivation of liberty safeguards policy lead in the Department of Health wrote out quite widely. There had been a concern about people who were nearing the end of life, including palliative care patients and patients in hospices. It was made clear in this letter that if somebody had consented to a care package and then went on—as part of their disease process when they were dying—to need some restrictions, and possibly to be moved to another place of care, that would not fulfil the acid test as such; neither would it in the case of people who were being nursed in a side room who were not under continuous supervision and control. The reason was that, in palliative care cases, there is often a time when the family cannot cope as the patient becomes unconscious, is moved to a hospice or develops another condition that had not been anticipated. It would be an inadvertent consequence if this letter from January 2015 no longer stood. It has been important and has made care easier. It was following this letter that we were able to change the regulations for what had to be referred to a coroner. That made a major difference, because families found it terribly traumatic to find a relative subject to a deprivation of liberty safeguard having to be referred to a coroner. I simply seek clarification on those two issues, but I in no way question the importance of removing “unsound mind” from the Bill. I hope this is the beginning of us seeing the end of that term, which is stigmatising.

[Baroness Hollins (CB)]

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

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[Lord O'Shaughnessy]

My Lords, we now come to the largest group of amendments on the issue that has perhaps taken up most of our attention in the progress of the Bill so far, and quite right too.

The government amendments in this group relate to ensuring that care home managers have an appropriate role in the liberty protection safeguards system that we are seeking to implement. You would have to have had ears of cloth not to have heard the concerns raised by noble Lords and stakeholders throughout the passage of the Bill about the proper role of care home managers. I agree that we must be absolutely clear at this stage in legislation about what is the right role for those care home managers. I also agree that there should be no scope for any conflict of interest—not when we are talking about the safety and care of very vulnerable people—and that we should ensure that all assessments are completed by those with the appropriate experience and knowledge. Furthermore, people should always have confidence that they will have access to independent support and representation.

I will shortly address the specific amendments in this group. Before I do so, I would like to draw noble Lords’ attention to other germane government amendments, which we will deal with on the second day of Report but which are important to consider in the round with the amendments in this group. Those include proposals that we have made to ensure that only responsible bodies can arrange the pre-authorisation review and that care home managers will be explicitly excluded from completing the pre-authorisation review. This is important because pre-authorisation should not confirm poor care planning or perpetuate a system where someone is receiving care in an inappropriate setting. The amendments that we have laid and which we will deal with on the second day will counteract any incentive the care home manager might have to ensure that a resident stays in a care home inappropriately. We are also determined to make sure that the care home manager cannot act as a gatekeeper to the IMCA appointment, and we have laid amendments accordingly.

There has been a great deal of discussion about the role of care home managers in authorisation. I have strongly and deeply considered noble Lords’ concerns in the context of what we know works now in the current system. There is a desire to make sure that the liberty protection system that we intend to introduce builds on what works and changes what does not. Under the current DoLS system, care home managers have the role of identifying that someone may lack capacity and need restrictions as part of their care. In practice, they must complete form 1, which brings together all of the current assessments for a person. This is then sent to local authorities, which appoint a best-interest assessor to conduct a further assessment ahead of providing the authorisation. This is an appropriate role for care home managers to undertake, and is the role we are proposing and clarifying through our amendments.

Amendment 30 requires the responsible body to make a decision on whether it is content that it is appropriate for the care home manager to carry out the relevant functions prior to authorisation, including arranging assessments and carrying out consultation. Amendment 90 applies this decision to reviews as well. This is an important change because it provides additional protections in cases where there may be concerns about a particular provider and its capability for conducting its role, and it allows responsibility to take on all the relevant functions in these cases. There may also be cases where there are no concerns about quality of care, but there may, for example, be particularly strong social worker involvement and it may make sense for them to take on those functions.

This power to remove the care home manager from the process can be enacted at any point, and we would expect it to be done at the earliest possible point, particularly if there are concerns. We will use the code of practice to set out the detail so that it is applied consistently by different local authorities, with clear criteria for the responsible body to make a decision on whether to retain responsibility for the relevant functions. In the case of care home residents, this significantly strengthens the role of local authorities in terms of oversight, intervention and supporting the quality of the operation of the scheme. If the responsible body has decided that the care home manager should be responsible for providing the statement and carrying out the other functions, the care home manager will bring together the information, evidence and assessments needed for the responsible body to make a decision on whether to authorise the liberty protection safeguard. In many cases, this will bring together recent valid assessments that can be used for this purpose.

As has been said previously, care needs change over time. We recognise that putting hard and fast rules on the validity and timeliness of assessments would not recognise the reality of what happens. That is why we will set out in the code of practice what we would expect to see in terms of valid and up-to-date assessments. The Bill also enables the responsible body to step in, if they are not confident in the validity of the assessments, by refusing to authorise the arrangements. Let me be clear that all the assessments would involve consultation with the person. In addition, the Bill will require the care home manager, or the responsible body, to complete the consultation with the person and other interested persons.

Some noble Lords have stated their concern that there is a potential conflict of interest if care home managers were to conduct assessments. The Government agree that there is a potential financial conflict if care home managers were to complete assessments for people in their own care homes, particularly when it comes to considering whether there are less restrictive alternatives. Amendment 52 explicitly excludes care home managers or others from undertaking the assessments if they have a specified connection to the care home, in particular if there is a financial connection. This will be set out in regulations. We will use the regulations to ensure, in England, that care home staff are not able to conduct assessments where they have a potential financial conflict of interest and the Welsh Government will have the power to do the same. Doing this in regulations allows us to provide the necessary detail, given the complexity of the care home sector, to ensure that there are no loopholes. For example, we would not want someone who works in another care home run by the same company to conduct the assessments.

Noble Lords have rightly asked questions about who undertakes the assessments and in particular why there were no clear requirements on the expertise of those who undertake capacity and medical assessments. That refers tangentially to the issue raised by the noble Baroness, Lady Hollins, before. Although that is already provided for in binding Article 5 case law, I have been persuaded that more clarity is needed. Amendment 52 clarifies that capacity and medical assessments must be carried out by someone with appropriate experience and knowledge. Capacity assessments should be completed by a registered professional such as a nurse, social worker or occupational therapist, and medical assessments must be completed by a physician. We will set out in the code of practice the experience and knowledge that we would expect to see for those undertaking assessments.

On the point about experience and knowledge, Amendment 53 tabled by the noble Baroness, Lady Finlay, would have the effect of requiring that the person who conducts the assessment has the appropriate skills and knowledge. The noble Baroness is absolutely correct that the person who completes the assessment should have the necessary skills to be able to conduct the assessment. Amendment 52 already provides for that within the description of experience and knowledge and we would expect that to cover the necessary skills. We will define that in the code of practice so that it explicitly describes the skills, using the term “skills” and describing the kinds of skills that ought to be required of the person carrying out assessments.

There are also some minor amendments that clarify definitions of care home manager and responsible bodies. Amendment 8 updates the definition of care home manager. Amendment 9 corrects the definition of care home manager in Wales. Amendments 11, 15 and 24 set out a definition of English and Welsh responsible bodies. Amendment 17 removes the definition of local health board as it is now superfluous.

I hope that noble Lords have had a reasonable chance to examine all the government amendments in this group. They have been carefully crafted to reflect to the best possible extent all the concerns set out by noble Lords at Second Reading and in Committee to remove any concerns about conflict of interest and make sure that care home managers are not, to coin a phrase, marking their own homework. They have an important role in organising assessments, but it is effectively an administrative function with proper oversight, and assessments will be carried out by those with the proper qualifications, expertise, skill and knowledge. I beg to move.

[Baroness Finlay of Llandaff]

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

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

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

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

[Lord Hunt of Kings Heath]

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

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

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

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


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

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

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

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

To me that sounds very comprehensive and welcome.

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

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

--- Later in debate ---

[Baroness Meacher]

My Lords, I put my name to this amendment and I very strongly support it. Having been a Mental Health Act commissioner for many years and having visited independent hospitals as well as NHS hospitals and other establishments, I remember those independent hospitals as being the most alarming environments that I ever visited. Very often, the biggest problem was indeed the conflict of interest. People would get into those hospitals and be treated, and that was all good, but whereas in an NHS hospital the pressure all the time, from the day of arrival, is to plan the exit and aftercare in the community, once those hospitals had got the person better they had a lovely ride. The patient was there and was no trouble, no longer had symptoms and was miles—maybe hundreds of miles—from their family. They did not get visits. The conditions in which those people were held were shocking, and the degree of the deprivation of liberty was often deeply shocking. Did they go out in the grounds? Probably not. Did they go out for walks? Probably not. Any kind of a sense of liberty could be lost, not just for days, weeks or even months, but for years. We would do our tiny best, but the fact was that we might get round to one of those hospitals every two years. It was inadequate to say the least. I therefore urge the Minister to take this very seriously. We are worried about care homes, which are probably local and have the family nearby, if there is one. They can be a problem, but this is on another scale and of another degree of severity, so I strongly support this amendment and urge the Minister to consider it.

[Baroness Finlay of Llandaff]

My Lords, I, too, have put my name to this amendment. My noble friend Lady Meacher has laid out very clearly some of the problems and conflicts of interest that can arise. One of the difficulties is deciding which will be the responsible body. If the place where somebody is treated is quite a long way from whoever commissioned their care, it can create real problems for a local authority or a clinical commissioning group, which might be funding outside the range of common care for somebody to be some distance away. That is why we have to decide which is to be the responsible body, and that responsible body must take those responsibilities seriously. The advantage of the responsible body being a designated NHS trust is that the private hospital is likely to have consultant-level staff who are likely to have an NHS contract somewhere at another trust, which may be nearby, or if they are part of a specialised group they will be subject to a degree of oversight, appraisal and so on within that specialist area. They are less likely to have local GPs who would be answerable to clinical commissioning groups. One just does not know. They have to go to one or the other. The most dangerous of all would be to have what one might term a mixed economy of a responsible body in some situations and a clinical commissioning group or local health board in another.

In Wales, things are a little different because the local health board covers the hospital sector and the community, so we have clearly defined geographical boundaries with much easier lines of answerability. My feeling is that we need to plump for one. I hope that the Government will, and I can see that there may, on balance, be advantages in saying the designated NHS trust is the responsible body.

[Baroness Thornton]

My Lords, I shall speak to my amendment, which is in this group. The noble Baroness, Lady Finlay, said that the Government need to opt for something here to solve this problem. Mencap, in particular, and VoiceAbility have been very exercised by this because, as noble Lords have said, there is a conflict of interest when an independent hospital can be responsible for authorising deprivation of liberty for people in the hospital for the purposes of assessment and treatment of a mental disorder. My amendment names the CCG or local health board as the responsible body to remove that conflict of interest.

Since the Winterbourne View learning disability abuse scandal in 2011, the Government have been trying to reduce the number of people in these settings but, it must be said, largely without success. There remain 2,350 people with a learning disability and/or autism in these settings who in many cases could, with the right support, be in the community, but half of them are in independent hospitals. The independent hospital sector is expanding—to the horror, it must be said, of very many people. The average cost of a placement in an assessment and treatment unit for people with a learning disability is £3,500 a week. It can be as high as £13,000 a week. The average stay is of five and a half years. This is really not acceptable. Many noble Lords may have seen the excellent piece by Ian Birrell in the Mail on Sunday—not a newspaper I would normally read—which looked at the companies and the significant profits they make from these very lucrative contracts. The article details two giant US healthcare companies, a global private equity group and a Guernsey-based hedge fund, as well as two British firms and a major charity. The point is that these bodies are responsible for deprivation of liberty, and that can neither be acceptable, nor indeed what the Government intended. The Minister needs to provide us with some solution to this problem.

--- Later in debate ---

[Lord O’Shaughnessy]

That is a perfectly reasonable question, but the AMCP would absolutely look at every case. There would not need to be an objection raised. I was just explaining the hierarchy for non-independent hospital cases. It would be, in a sense, going to the second-highest port of call for scrutiny that we are considering in other cases to highlight the seriousness of it. There would not be that gatekeeper point which the noble Baroness is worried about.

[Baroness Finlay of Llandaff]

How would we be clear that we knew about all the people who had a deprivation of liberty, if we are depending on that independent hospital to notify and call in an AMCP? That AMCP may be one with whom they end up having an uncomfortably close or cosy relationship. How could there be a degree of independence, when the person signing it off as the responsible body would still be the one with a vested interest in keeping their beds full and their income going, which was the very thing that concerned us about the care home? Is the Minister prepared to meet us and discuss this outside? I understand the intention to have everyone assessed by an AMCP, but I am worried that if we leave it to go to the Commons, some of the concerns that have been raised here may not get carried over.

[Lord O’Shaughnessy]

Absolutely—I would be more than happy to do so. I have tried to demonstrate our intention to deal with the issue, but we remain open-minded about the best way to do it. We have concerns with the amendments as laid—we were trying, if anything, to turbo-boost the approach. I recognise that the noble Baroness is concerned about an overfamiliarity between individuals, which she is trying to make sure that we avoid. There may be other concerns with the model that we are considering. I am more than happy to take that offline, and that would be a very fruitful discussion.

--- Later in debate ---

Therefore, I make it clear to the Minister that we have thought long and hard about how to deal with this issue, which we have argued back and forth over the past few weeks, in a way that offers the greatest legal clarity and assurance to people who will be subject to this law, to their families and to practitioners who have to interpret it. With that in mind, I beg to move this amendment, and I have to say that at this point, reassurances about anything in a code of practice will not suffice.

[Baroness Finlay of Llandaff]

I endorse the comments of the noble Baroness, Lady Barker, in moving this amendment. One of the reasons that it should be in the Bill is that we have been trying to have the cared-for person at the heart of our deliberations, and the wording here is completely compatible with other parts of the Mental Capacity Act.

There is a terrible tendency when people look at the least restrictive option to also think about what might be convenient for them. The least restrictive option might not be the easiest, and might mean that staff have to behave in quite a different way. By wording these two amendments in this way, we are looking at the risk of harm to the person specifically, and are keeping the person at the heart of this. There always will be a risk that decisions will be contested in court and will need to go to court, and an application to the court may be judged specifically against that test, because it is in the Bill. If it is in the code of practice, there is a real danger that it could be downgraded.

[Baroness Thornton]

I put my name to this amendment, and we on these Benches very much support the intention behind the amendments in this group.

I bow to the fact that the noble Baroness, Lady Barker, has lived and worked with this for a very long time indeed, has reviewed the Mental Capacity Act and was very influential in the way it was formed. There has been a lot of discussion with stakeholders about this group of amendments and how we can best express “necessary and proportionate” in a way that will strengthen the Bill and prevent harm to the cared-for person. These amendments do that, providing clarity. Again, as I mentioned in the previous debates, because this is to do with protection and powers, it has to be in the Bill and not the code of practice. I hope that the Minister will agree to the amendments, because it is probably the best way forward, and that he will end this discussion in harmony and agreement.

Breast Scans

Baroness Finlay of Llandaff Excerpts

Monday 19th November 2018 Lords Chamber

[Lord O'Shaughnessy]

The noble Baroness is of course right. It is precisely because of interference with the image that the trial was discontinued and the evidence not collated. Such cushions are used for women across the country who are particularly sensitive or after surgery, but I have asked the committee to consider whether there are ways in which they can be used more systematically to relieve discomfort without interfering with the crucial image that needs to be captured.

[Baroness Finlay of Llandaff (CB)]

My Lords, will the Minister undertake to ask Sir Mike Richards to look at the need for large paddles for ladies who have large breasts and who may currently need to have two separate images taken on the same side, with the two images then put together, which does not always give a good picture? Not all breast screening services can supply larger paddles to have larger films.

[Lord O'Shaughnessy]

I am more than happy to do so. If the review is not the correct forum for consideration of such an issue, I will refer it to the advisory committee instead.

Health: Stroke

Baroness Finlay of Llandaff Excerpts

Wednesday 14th November 2018 Lords Chamber

[Lord O'Shaughnessy]

I understand the noble Baroness’s frustration about the gap between the strategy and the plan but it was right to include the work undertaken on the stroke plan within a long-term plan, because clearly that covers every aspect of how the NHS is working. In the meantime, I point out to her that the NHS RightCare programme for cardiovascular disease has been set up. It is aimed specifically at dealing with some of the variation in service that she talked about. But there is good news in stroke care: not only is there less incidence than 10 years ago but 30-day mortality rates have more than halved, so there is progress which we need to build on.

If the noble Baroness and the House will allow me, I would like to use this opportunity to pay tribute to my noble friend Lord Skelmersdale, who died very recently. He was a predecessor in this role and a great champion of stroke care, both as a Minister and as chair of the Stroke Association for 10 years. I am sure that everyone in the House would offer their sincere condolences to his family and friends.

[Baroness Finlay of Llandaff (CB)]

My Lords, will the Government outline the plans to roll out thrombectomy, which is sucking out the blood clot and is done under remote X-ray control? It has massively improved outcomes, even on thrombolysis, which tries to dissolve the clot. Such services need to be available across the UK on a 24/7 basis because stroke does not respect the clock or the calendar.

[Lord O’Shaughnessy]

The noble Baroness is absolutely right. In 2017, NHS England announced a rollout of the mechanical thrombectomy procedure to 24 centres across England. It is expected that 10% of stroke patients will be eligible. It leads to big reductions in disability after stroke, is now approved by NICE, and will be a significant part of the long-term plan which we will publish by the end of the year.

Mental Capacity (Amendment) Bill [HL]

Baroness Finlay of Llandaff Excerpts

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

[Baroness Murphy (CB)]

My Lords, I am the world’s greatest pragmatist in this matter. I am very sympathetic to what the noble Baronesses, Lady Barker and Lady Tyler, are saying. This Bill is by no means perfect. It has huge gaps and we would not have started from here, but the reality is that this Bill will be with us for the rest of the autumn and I believe that Sir Simon Wessely’s report will be submitted to the Government around 12 December, so it is likely to come before Third Reading and before we finish the Bill. We will be able to see if there are great big gaps. I do not think the two things will overlap very much. We might be helped out, particularly on amendments on advanced directives, and in that context we can perhaps make ourselves closer to what Sir Simon Wessely recommends, but I do not think there is anything to address, except that the current Bill is not working. We have all those people waiting for an assessment who will never be assessed. We need some legislation in place. There is some urgency. I know we would like a perfect Bill, but we are not going to get one. What we need is an implementable Bill which makes assessments doable for people who need them and so that we can get some process in place. The Bill is not perfect. We would not start from here, but we have this Bill and we should continue with it.

[Baroness Finlay of Llandaff (CB)]

I shall continue on the theme that my noble friend Lady Murphy has set out. Last week, I chaired the National Mental Capacity Forum leadership group. One of the people there said that:

“While there was an initial knee-jerk reaction amongst care providers and the local council, if you consider the”.


liberty protection safeguards,

“in more detail you quickly come to understand that it is actually quite an innovative solution”,

because there is such a backlog and so much difficulty in trying to get anything in place.

I am concerned that we are trying to draw clear lines between different types of illnesses and conditions when it is pretty impossible to do so. There are mental health conditions that impair your capacity, even though you may be compliant with treatment, there are physical illnesses that result in impaired capacity, and there are illnesses—Lewy body dementia is one of them—where part of the illness means that you may be a risk to other people. Huntington’s disease is similar and a horrible disease to have. Trying to draw clear lines between those different groups is difficult.

I looked at the amendment and for a definition of “fluctuate” and “short”. I tried to think how I would define “fluctuate” or “short” in a clinical context, and I could not because “short” might be short to some people and long to others and fluctuation can be all kinds of directions and with different degrees of severity. The difficulty we are grappling with here is that we are trying to write something in legislation that will be literally black and white: black words on a white page. The people we are dealing with are incredibly individual and have very different needs. That is why, returning to our previous debate, the stress on wishes and feelings and on consulting people who know the person becomes incredibly important. We will go on to talk about ways that people can call for external scrutiny because, if they care about the person, they need to be able to do that.

--- Later in debate ---

[Baroness Thornton]

The amendment would reduce the maximum time for which an individual can be held in detention without renewal from three years back to 12 months. The Bill would allow responsible bodies to renew an authorisation of deprivation of liberty in some cases for up to three years, while simultaneously reducing the safeguards that a renewal process would require. The amendment would shorten that three-year period to a maximum of 12 months.

Why is that important? Tripling the potential length of an authorisation period to three years creates a stark difference between the Mental Capacity Act and the Mental Health Act, apart from anything else, and moves away from best practice in other countries. Paired with the new LPS renewal process, which weakens safeguards designed to prevent lengthy detentions, a three-year authorisation will be likely to face legal challenge.

At its core, the new LPS system is intended to safeguard vulnerable people who have been deprived of their liberty on mental capacity grounds. The possibility of a three-year period of detention with limited safeguards gets the balance wrong between safeguarding vulnerable individuals and the desire to reduce the bureaucracy of the system.

Strasbourg case law confirms that a lawful deprivation of liberty for the purposes of Article 5(1)(e) of the ECHR must include both “limits in terms of time” and “continuing clinical assessment of the persistence of a disorder warranting detention”. Therefore, in order to comply with Article 5, any system must contain, first, a provision for the termination of the authorisation after the maximum time has expired and, secondly, an ability to terminate an authorisation before the time limit has expired if the deprivation of liberty is no longer necessary.

A three-year renewal limit is likely to pose problems for responsible bodies, especially in cases concerning conditions such as learning disabilities, acquired brain injuries and other non-degenerative mental impairments. The courts are likely to intervene to interpret those paragraphs concerning renewals—paragraphs 27(a)(ii), 28(b)(ii) and 29(1)(b)—as narrowly as possible. Capacity assessments are time specific, and a three year-old capacity assessment cannot be relied on as accurate evidence for detention. Therefore, we propose to reduce the three years to 12 months.

It is notable that a 2017 paper comparing mental health legislation in five different jurisdictions—Canada, Australia, Scotland, the Republic of Ireland and England and Wales—states that renewal orders vary in different jurisdictions,

“with the time periods for subsequent orders being longer in duration up to a maximum of 12 months, except in Ontario (3 months) and Victoria (6 months)”.

The Law Commission states that a three-year period should be considered only in the context of robust safeguards and constant review. Given the weakening of the safeguards throughout the rest of the Bill, it would be inappropriate to triple the length of time for which an authorisation can last.

In his opening remarks on the Bill, the Minister stated:

“It is essential that the system afford the necessary protections for the most vulnerable people”.—[Official Report, 16/7/18; col. 1061.]

The Bill as currently drafted would in this respect not deliver that protection. I beg to move.

[Baroness Finlay of Llandaff]

My Lords, I have three amendments in the group designed to remove any ambiguity about authorisations, in that an authorisation would fall if it partly fell—in other words, if the person’s condition had either improved or changed to such an extent that the plan in place was no longer applicable, even in part, that would warrant a complete review. I accept that it would have to be a light-touch revision, because some things might not have changed, but I am not comfortable with simply allowing it to be reviewed and people to say that these parts of the condition no longer apply.

Amendment 58C is to stress the need for evidence to be supplied to support statements. I hope that the Minister will be able to provide me with some assurance. That evidence might come from photographs, video recordings of behaviour or whatever. That may be quite different to the written word. I worry that one person’s observed written word may not adequately portray a picture, particularly where the cared-for person has become withdrawn. Someone might interpret that as their being compliant, when actually they may be deeply unhappy. A broader direct recording of the person could be helpful.

I tabled Amendment 62A because I was concerned that the care home manager might be in the process of arranging for adaptations to be made to meet the cared-for person’s needs in line with that person’s wishes and feelings, and that the Bill’s wording does not provide enough flexibility to consider the arrangements to meet the individual’s needs.

[Lord O'Shaughnessy]

I thank the noble Baronesses for tabling their amendments about renewals. I deal first with Amendment 58A, moved by the noble Baroness, Lady Thornton, which, as she said, would have the effect of meaning that authorisations cannot be renewed for longer than 12 months. As she pointed out, this would go against the Law Commission’s recommendation, which was that there could be circumstances under which renewals took place for up to three years, particularly following an initial review after up to 12 months and if it was unlikely that there would be a change in the person’s condition.

These three-year renewals are in place so that those who are in a stable condition and unlikely to recover are not subjected to annual assessments. The Bill does provide the safeguard—referred to by the noble Baroness—which ensures that an authorisation would need to be reviewed if there is a change. We would also want to make sure that there are appropriate reviews of arrangements when annual reviews under the Care Act take place. It would be up to the responsible body to set review periods. In care home settings, the care home manager must report to the responsible body on any reviews that have been carried out. As the Bill stands, there are significant safeguards to prevent abuse or lack of care of the vulnerable person.

All that being said, I know how strongly noble Lords and stakeholders feel about this issue. The noble Baroness, Lady Thornton, made a valid point about aligning the review process with the terms set out under the Care Act. I would like to give further thought to this, particularly in the context of the discussions which will be taking place about the proper role of the care home manager. There is clear concern about a proper system of oversight and regular review where responsibility has been devolved to the care home manager. If the noble Baroness will allow me, I will follow that up after this debate.

Amendment 58B, tabled by the noble Baroness, Lady Finlay, considers an authorisation ceasing to be renewed if it has lapsed wholly or in part. We will want to give further consideration to that. As discussed earlier in Committee, there are circumstances under which one might be happy for an authorisation to continue after a very minor change. That might be the proper process to align this to, and I want to give further thought to this.

Amendment 58C asks that, when deciding whether to renew authorisations in care home cases, responsible bodies should consider other relevant information, as well as that provided by the care home manager. I can confirm that the Bill does allow responsible bodies to consider information other than that provided by the care home manager. That would, inevitably, be in other formats too. We will set out more detail on that in the code of practice.

Amendment 62A would add the word “arranging” to the scenarios in which the care home manager was required to notify the responsible body that an IMCA should be appointed. The amendment intends to make sure that that happens at the earliest stage, including when the assessments are being arranged. That is what the word “proposing” in the Bill achieves. We are satisfied that the language currently in the Bill means that care home managers would be looking at this issue when they are beginning to propose an authorisation, which is the earliest point at which planning for, arranging or bringing together the assessments would take place. I would be happy to demonstrate what underpins our belief that this is the case. I do understand what the noble Baroness is driving at; it is something which we are trying to achieve.

On that basis, I hope that the noble Baronesses are willing to withdraw or not move their amendments.

--- Later in debate ---

Moved by

[Baroness Finlay of Llandaff]

61: Schedule 1, page 17, line 23, at end insert—
“(c) for a named person to be in charge of training and revalidation of Approved Mental Capacity Professionals,(d) for honorary contracts with neighbouring local authorities and health bodies as required.”

[Baroness Finlay of Llandaff]

My Lords, I do not want to detain the Committee by revisiting too much of our debate on day 2, when the Minister stated that the local authority would decide for itself how to organise and manage how AMCPs will operate. My concern is that they must be trained to a uniformly high standard. Such training should include assessment in all the key domains of responsibility. They should be registered as an AMCP and subject to revalidation over time. These people will, potentially, hold an enormous amount of power over somebody who is vulnerable.

I am also concerned that, unless those professional standards are in place, we will have a problem with quality control. In the event of a concern being raised about an AMCP, it is important that they are formally registered with the local authority. I also raise the question of how they will be indemnified and who will be responsible for their appraisal and supervision. They must have honorary contracts with adjacent local authorities to enable them to act, because some local authorities have relatively confined geographical areas. Given that these should be professionals, they should be listed with their professional body as having specialised training and skills. Another reason for this is my worry that, if they are going to function in hospitals, and unless they have a formal honorary contract from the local authority and are registered, we may end up with a two-tier system between local authorities and hospitals. I am not sure how that is going to work.

Amendment 61A seeks to expand the range of people who can train to become an AMCP. I declare an interest as president of the Chartered Society of Physiotherapy; I was at its annual conference at the weekend. I did not add physiotherapists to the list when I wrote the amendment, because I had not had a chance to consult them. However, it was evident, from many inspirational presentations, that physiotherapists working in head injury, acute trauma and stroke units, and in mental health services, can often be key to rehabilitation and restore people dramatically to a degree of independence that others had not envisaged. They felt very strongly that they did not want to be excluded; they have a lot to offer and are keen to train up, which seems very sensible.

I have also come across a few—not many—doctors who have retired from their main clinical practice but remain on the medical register, still work in some capacity or another, and, in later life, have developed an interest in people with impaired capacity. They have years of experience behind them, particularly in old-age psychiatry and so on, and would like to train as an AMCP. The criteria on which to select people should be their motivation, personal skills and background experience. We should not judge them by their original clinical degree qualification, because that is arbitrary. It does not mean that just because you are a nurse, a clinical psychologist or a social worker you would be perfectly fitted to this role; nor does it follow that because you are a speech and language therapist or a physiotherapist or whatever, you would not be suitable to take on this role and these responsibilities.

I therefore hope that the Minister might be able to expand a little, or perhaps not even discuss it here but think again, on how we will ensure that the people who carry this responsibility are trained to a uniformly high standard, are properly indemnified, can be identified, are able to function properly and can be held to account for the way in which they take decisions and advise. I beg to move.

[Baroness Jolly (LD)]

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

--- Later in debate ---

[Baroness Finlay of Llandaff]

My Lords, I learned some years ago not to have lists in the Bill, and I have fallen over my own list on this amendment. I am most grateful to the Minister for the reassurances that he has given. A lot of work will need to be done so that we make sure that training is there for the right people at the right time, but for now I beg leave to withdraw the amendment.

Amendment 61 withdrawn.

--- Later in debate ---

Moved by

[Baroness Finlay of Llandaff]

63: Schedule 1, page 18, line 18, leave out “the manager is of the opinion” and insert “there is reason to believe”

[Baroness Finlay of Llandaff]

My Lords, in this group of amendments we begin to get into the issue of IMCAs and how that whole system will operate. In Amendment 63 I use the words,

“there is reason to believe”,

because I feel strongly that anyone who is concerned about the cared-for person—whether they are family, a friend who knows them well, a care assistant in the care home, if they are in a care home, or somebody who is coming into wherever they are being cared for, such as supported living—must be able to raise them independently, if necessary anonymously, and to request that an IMCA is appointed to go and see what is happening.

In Amendment 64 I removed the word “only” because I was attempting to remove the veto from a care home manager. The potential veto of a care home manager has caused so much concern in debate, and a great deal of anxiety in the briefings that have come through to us. I stress that advocacy—we will come on to that overall—needs careful monitoring, too, and people who act as advocates need support and supervision. Not just anybody can be an advocate, and we have to be careful that we do not exclude family and those who know a person well by having an advocate come in when in fact a family member who has known them for years may be in a much better position.

Also, we have to have a way of screening out advocates who, for whatever reason, may not be the right people to do this at the time. Unfortunately, it is inevitable and part of human nature that people will want to work in a field if they have had some experience of being on the receiving end. But certainly, when you look at bereavement counsellors and so on, they need to have a clear period before they are selected, and they need to be carefully selected and screened, and supervised. We are talking about extremely vulnerable people here, and the last thing we want to do is somehow to open the door to them being vulnerable at somebody else’s hands through our best intentions. I beg to move.

[Baroness Barker]

My Lords, this is again a rather fundamental indicator of some of the things that are badly wrong with the Bill. The words “best interests” appear in it three times, and twice they are used in relation to a care home manager being able to restrict access to advocacy. As the Bill stands, referral to advocacy is controlled by a relevant person, either the responsible body or the care home manager, and an advocate must be appointed if a person has capacity and requests an advocate—that is quite rare, and I have to say that under the Bill it would be something of a miracle, because they do not have the right to information about not only their current circumstances but about other less restrictive options. The Minister’s statements on information last week, when he referred to GDPR, were so strange that it has taken me a considerable time to work out that he had completely misunderstood that under the current system people have a right to information. They have the right not to request information but to be provided with information, which this amending Bill severely restricts.

However, the second condition is by far the most worrying. Somebody can request an advocate if the person lacks capacity and the relevant person is,

“satisfied that being represented and supported by an IMCA would be in the … person’s best interests”.

I invite noble Lords to think what would have happened if those words had been in law during Winterbourne View. That is why I am quite happy to use the word “shocking” about the Bill, as this is unacceptable. My amendments would try to get rid of the abuse of the term “best interests” to limit vulnerable people’s access to support. The Minister knows that under the DoLS system, by and large, if somebody requests an advocate, it is up to the relevant body to try to do their best to find one, or that they find an appropriate person. I refer to the point made by the noble Baroness, Lady Finlay, that under case law at the moment, local authorities have the right to override if an appropriate person is not doing their job properly on behalf of the person. That too will be undermined by the Bill.

The Minister will also know that if somebody has no relatives and nobody else in the world—they are “undefended”, to use that rather archaic but useful and clear term—they have an automatic right to advocacy. I know that much will be made of advocacy being expensive, advocates being a resource that is not readily available, and that people who do not need advocacy will be unnecessarily interviewed. I am quite happy to talk at length to the Government about ways in which advocates or advocacy resources could be better used and better targeted—but absolutely not by drawing it like this, putting this sort of hurdle not even in a code of practice but in a Bill.

--- Later in debate ---

[Lord O'Shaughnessy]

I am happy to discuss the issue with all noble Lords, as I have said in the past. I return to where I started: the intention of this approach is to make sure that independent advocacy is not imposed on someone who genuinely does not want it. It is not to provide a “get out of jail free” card for poor care home managers. If that is a concern, I take it very seriously, but it is not the intention of the Bill. However, if it is the case, something needs to be remedied. Let me assure noble Lords that I will make best efforts to do so as we move forward from Committee.

This has been a very useful discussion. In some sense it has provided a degree of continuity from our discussion last week, while moving on to the issue of advocacy, which we will clearly explore further. I hope that, with the reassurances I have given at this stage, the noble Baroness will feel able to withdraw her amendment.

[Baroness Finlay of Llandaff]

My Lords, this debate has been extremely interesting and, in many ways, gets to the nub of some of our concerns. In looking at the Bill, one thing I have tried to do is to benchmark its procedures to see how they would work. I was involved in prosecuting appalling care in EMI homes. I am trying to see how we could have discovered sooner that there were problems there.

I share the concern about the care home manager having too much power. Having said that, I have found the Minister’s answers today reassuring, as they were on the second day in Committee. I suggest, however, that the number of objectors will be very few, because many of these people have such impaired capacity and are not in a position to object—it may be other people who speak up on their behalf.

[Baroness Barker]

I wonder whether the noble Baroness, Lady Finlay, agrees that, when you watch well-trained advocates at work, you see that they absolutely understand if their presence is upsetting somebody. They are not routinely attempting to force themselves on to people who definitely do not need their help. The question of whether somebody wants their help or not is a more nuanced professional judgment.

[Baroness Finlay of Llandaff]

I agree with the noble Baroness that when they work well, they can work extremely well. As I said earlier, I would also caution against the family and other people being potentially pushed aside, and people being not adequately supervised or monitored.

We have a great deal to consider outside the Chamber tonight. I am grateful to the Minister for being in listening mode so far. This group of amendments and the next are the ones that we will need to have a big discussion about. In the meantime, I beg leave to withdraw the amendment.

Amendment 63 withdrawn.

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Moved by

[Baroness Finlay of Llandaff]

65: Schedule 1, page 18, line 33, at end insert “or a person concerned with the welfare of the cared-for person has requested independent support for the cared-for person”

[Baroness Finlay of Llandaff]

My Lords, I feel that I should apologise for leading on this group of amendments, but it was by chance that my number came up. It was not my choice: I did not ask to lead on it.

The role of Amendment 65, which is the one that I really want to speak to, is to state clearly that we must strengthen the voice of anyone who has any concerns so that they can speak up on behalf of the cared-for person. I note that my noble friend Lady Hollins’s Amendment 66 provides powers to the voice of the responsible body and would mean that the responsible body must listen to representations. Amendment 67 strengthens the word “must”. There is a great deal in these amendments. I will not take the time of the Committee by speaking to other noble Lords’ amendments, other than to say that this group of amendments contains a great deal of rich wisdom. I beg to move.

[Baroness Hollins (CB)]

My Lords, this group of amendments concerns the appointment of an advocate, or appropriate person, to support the cared-for person in exercising their rights. The appointment of an independent mental capacity advocate and the identification of an appropriate person rely on care home managers being able to arrange a capacity assessment and a best-interests decision and on them notifying the responsible body. I noted the Minister’s assurance on our last day in Committee that care home managers will not be making an assessment themselves. But how will errors be identified and what will happen if the care home manager gets it wrong? Will the Minister tell the Committee how that will be detected on the basis of a paper-based review by the local authority when the paper has been supplied by the care home manager? The responsible body should not rely simply on what the care home manager thinks.

My Amendment 66 gives the local authority discretion to appoint an appropriate person or IMCA without notification from a care home, with whom there may be a conflict of interest, if the responsible body has reason to believe that such representation and support is needed for the cared-for person. Reasons to believe might include notification by an AMCP or a third party, or local authority social services involved in care planning.

The provision of advocacy can have a transformative effect and be the first time that the cared-for person’s views, and those of their family, are forcefully represented to decision makers. A failure to listen to people or to give weight or credence to what they say lies at the heart of many of the tragedies that have shamed social care and health services over recent decades. For that reason, it is vital for people to get the support that they need to express their views and exercise their rights, either through the appointment of an appropriate individual, often a family member, or an independent mental capacity advocate.

As they stand, Clauses 36 and 37 of the Bill are confusing and poorly drafted, with inconsistencies. For example, the Bill states:

“An IMCA should be appointed if the cared-for person … has capacity to consent to being represented and supported by an IMCA, and … makes a request to the relevant person”—


but IMCAs are instructed to support and represent only people who lack capacity. My Amendments 67, 69, 70, 73, and 74 add emphasis and aim to address these inconsistences and ensure that every cared-for person has access to support from either an appropriate person or an IMCA who is both willing and able to help them understand and exercise rights of challenge.

As it is drafted, the Bill leaves open the possibility of circumstances where a person may have neither an IMCA nor an appropriate person and therefore no means of being able to exercise their rights under Article 5(4) of the European Charter of Human Rights. Rulings such as the AJ v A Local Authority judgment, in paragraph 35, stipulate:

“Article 5(4) may not be complied with where access to a court is dependent on the exercise of discretion by a third party, rather than an automatic entitlement … Where a person lacks the capacity to instruct lawyers directly, the safeguards required may include empowering or even requiring some other person to act on that person’s behalf”.


My amendments therefore remove best interests from the criteria for appointment of a representative, as this should play no role in determining whether people are able to exercise their rights of challenge. Will the Minister explain the basis on which he believes that Part 5 of the Bill as drafted is fully compliant with this ruling and with ECHR Article 5?

I am also concerned about the potential conflict of interest if those responsible for arranging and providing care, such as care home managers, also act as gatekeepers to the person’s ability to exercise their right of appeal through best-interest assessments. There should be a clear route for the cared-for person to be able to appeal and to get the support that they need to do this. We know that access to justice is already a serious problem under the current system. The appeal rate is below 1% and cases such as that of Steven Neary and others show how hard it is for families and detained people to challenge public bodies where they object to the arrangements. I understand that the Government estimate that the new arrangements will reduce the appeal rate even further to 0.5%.

My Amendments 76 and 77 recognise the considerable responsibilities being placed on an appropriate person. In some circumstances, an appropriate person such as a family member who knows the person may well be best placed to assist the cared-for person, but may need some assistance. Making sure that an IMCA is involved in these cases would enable them to fulfil this role with support.

Nothing in the Bill details the functions that the IMCA will perform. It would help the Committee if we understood why this has not been addressed. The Law Commission’s draft Bill provided powers to strengthen regulation provision—Section 36 of the Mental Capacity Act—around how an IMCA is to discharge the functions of representing or supporting, including challenging decisions and facilitating a person’s involvement in relevant decisions. The experience of DoLS over the last nine years has shown us the need for clarity on when the representative—an IMCA or lay person—can or needs to challenge the authorisation.

My Amendment 79 recognises this and reinserts regulation-making powers into the Bill, extending it in the case of an IMCA appointed under the LPS to make provision as to how that advocate is to support the cared-for person, and where relevant the appropriate person, in exercising the right both to make an application to court and to request a review. This provision is necessary to secure a person’s rights under Article 5(4).

The Bill recognises that the role that the appropriate person undertakes provides a vital safeguard for the cared-for person for the purposes of Article 5 of the ECHR, but the Bill fails to place a duty on the responsible body to keep under review whether the appropriate person is undertaking their functions. This is an important safeguard under the DoLS, where the relevant person’s representative role—essentially an identical role to the appropriate person—has a duty to maintain contact with the cared-for person. My Amendment 80 places a duty on the responsible body to keep under review whether the appropriate person is undertaking their functions and, if they can no longer fulfil them, to appoint another appropriate person or IMCA at that point.

The Minister has given reassurances, a number of times, that issues within the Bill will be addressed through the code of practice. The requirement to act needs to be in the Bill. How it is done and implemented could be set out in the code of practice. I hope that the Minister will accept that these amendments address serious and fundamental issues that need to be resolved within the Bill.

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I hope, on that basis, that the noble Lord, Lord Touhig, will recognise that the Government intend to work together to make this Bill better. I think we are making some progress in that endeavour, and I am looking forward to working with him and all noble Lords to improve it further. On that basis, I hope that noble Lords will feel able not to press their amendments.

[Baroness Finlay of Llandaff]

My Lords, this has been a fascinating debate. I listened very carefully to the speech of my noble friend Lady Hollins. Her experience shone through, and there was much wisdom in her comments. I worry that perhaps in this and the previous group of amendments we have not adequately focused on the need to support the cared-for person as much as possible in making their own decisions and in supporting them. I can envisage a situation where the appropriate person has limitations for whatever reason and it would seem very sensible that they were then able to request an IMCA be appointed.

However, just on the other side of it, we must not forget the enormous burden out there already. Only last week I spoke with a brain injury case manager, Dr Mark Holloway, who works with a care home. He said he is currently managing 13 cases of clients with acquired brain injury who are awaiting DoLS approval from the local authority. Despite the efforts of the care home staff and their solicitors, they have not been able to get this through. We must not lose sight of the fact that the current system is, quite frankly, completely failing. He was saying that they have worked very hard to make sure that it is the least restrictive option, but he is concerned at the lack of scrutiny of their decision-making. In their efforts to acquire DoLS authorisations, the care home staff have sought and paid for expert legal advice on multiple occasions to support them constructing clear and evidenced capacity assessments. He stresses the difficulty of assessing capacity in acquired brain injury and the need to assess function: not just what is said but how the person is actually functioning—what is done and the complexity of it.

I hope that we will return to the issues behind this set of amendments, because in a way I do not feel that we have done justice to the subject tonight. It does need a bit more discussion outside this Chamber. I beg leave to withdraw my amendment.

Amendment 65 withdrawn.

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[Baroness Murphy]

My Lords, Amendment 84, in the name of the noble Baroness, Lady Thornton, is possibly one of the most important amendments we have tabled to the Bill. It has become so much more important over the last 20 or 30 years to try to encourage people to make decisions in advance about what should happen to them and to encourage them to think about what will happen in the event of things going wrong—to think about things such as lasting powers of attorney and advance decisions on mental health services. I understand that Sir Simon Wessely will recommend some changes that are very similar to this to go into the new mental health legislation. It would be good, bearing in mind our previous discussions, if we could feel confident that the same sort of approach was being taken in this Bill.

Advance decision-making in legislation has proved quite difficult to implement, because you have to have a widespread campaign of understanding how people can make these decisions. It also has to have the individual making the decision accept that things will happen to them that they are not expecting, which is sometimes very difficult. That is why it so difficult to get people to sign up to insurance against long-term care; they simply do not believe that it will ever happen to them. It is very difficult to get these bits of legislation implemented and widespread, but we have to start somewhere. This is such an important piece to try to get into a Bill, to start people thinking about their future and what is acceptable. This would be a very important thing for the Bill.

I would also like to see Amendment 85 implemented. It is something that the Law Commission had in originally. I am not quite sure why it came out. It sort of just disappeared in the transcription somewhere. It is an important safeguard. We tend to forget all those Victorian cases a couple of hundred years ago when people were quite regularly held in circumstances against their wishes and unlawfully deprived of their liberty. It is as well to be reminded that it can, and probably does, still happen quite frequently. To have something on the statute book would be helpful, so I support the two amendments.

[Baroness Finlay of Llandaff]

My Lords, I am afraid I will take a different view. Amendment 84 is potentially incredibly dangerous in the context of the Bill. I can understand why people with a mental health disorder who know exactly what is likely to happen to them when they relapse and know what treatment they do and do not want can make an informed decision based on their previous experience of their illness and episodes. Here, however, we are asking people to provide advance consent to their liberty being deprived in a situation that they do not know about and have not experienced. The evidence from advance care planning—I have a recent paper from Ontario—showed that people’s knowledge was very poor. There were decision conflicts and when they were re-interviewed later they had re-evaluated their decisions in the light of further information and as things had moved forwards.

The problem is that the cared-for person’s experience of care is based on human interaction. They cannot predict who will be the carer at some point in the future, nor how that interpersonal chemistry will work. I am concerned that there is a real danger that someone could be locked in to having to live with what they said previously. There is a lot of evidence from the world of care planning that people do change their preferences. Indeed, as an illness progresses, they may change them very radically.

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[Baroness Finlay of Llandaff]

I do not want to prolong this too much but I will ask the noble Baroness: has she in any way lost confidence in the proposal that she put forward when the Mental Capacity Act was a Bill before us? It was for an advance statement of wishes, which has, when properly used, been a very powerful tool to make sure that somebody is listened to. My concern has been that our discussion to date has been about the wishes and feelings of the person as previously expressed. From the way she was talking, I am concerned that it sounds as if she might have lost confidence in the ability of that—because, as I have said, I have a real concern that tying somebody legally to enforcing something which was said in advance could potentially be really dangerous.

[Baroness Barker]

No, I have not lost confidence in that; I simply wish to undertake further discussion, given that—I say it again—it looks entirely likely that mental health legislation may be changing. I think, in light of that, that it is a wise discussion to have.

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[Baroness Thornton]

Amendment 83 concerns the power of attorney and restrictions on it. This amendment comes from Clause 3 of the Law Commission’s draft Bill. I said right from the outset that in Committee we would test the Bill against those issues that the Law Commission had decided to put into the draft Bill and ask why they had been dropped. Many of them are absolutely at the heart of the safeguards that are necessary for vulnerable and cared-for people. The amendment would insert a new section into the Mental Capacity Act, which expressly prevents,

“a donee of a lasting power of attorney or a deputy”,

appointed by the Court of Protection from consenting on a person’s behalf,

“to arrangements which give rise to a deprivation of … liberty”.

This is the position in the current law but this statement makes it explicit. I beg to move.

[Baroness Finlay of Llandaff]

My Lords, I have three amendments in this group, which are there simply because the topic is lasting power of attorney. I do not have an argument with Amendment 83 at all. It is absolutely right that the person’s best interests must be considered and that someone cannot just give consent on their behalf.

The amendments that I have tabled are designed to solve three current problems that we have with lasting powers of attorney. The first, Amendment 83ZA, relates to the identity documentation that somebody must produce to show that they are the donee of a lasting power of attorney. These are bulky papers which have to be registered and stamped by the Office of the Public Guardian, and then produced. For many people who are donees, those papers may be at their home; that may be a long way away from wherever the cared-for person—the donor—is. When that donor has lost capacity, the donee can either carry the sheaf of papers around with them all the time or just hope to be going via their home filing cabinet to pick them up before they go to see the person.

I hope that we might move toward something a bit more modern in electronic identification—something like the driving licence, which is a small card on which you can have a registration number. You could also have a picture of the donor as well as one of the donee, which would allow a second layer of recognition. That would also, I hope, focus the mind on the fact that the donor must be at the centre of all the decision-making. Its validity could easily be checked against a number, so that if it had been updated—and for some reason the previous form had not been returned—a simple check with the Office of the Public Guardian might verify its status.

Amendment 87G is designed to solve another problem that has been arising: that a person may appoint several people to hold their lasting power of attorney in the event that they lose capacity. However, as time goes on it has happened that they lose confidence in one of those people, for whatever reason. Maybe there is a dispute in the family or they feel that the person is no longer able to take a decision in their best interest, for whatever reason, and they want to revoke having that person as a donee. The problem is that it is quite a complicated process and they have to go back to square one. This amendment is designed to make it much easier for them to state that they no longer want one person listed but they want the others to remain. I have discussed this with the Public Guardian, who sees it as a problem at the moment that the revocation of a donee is difficult.

Amendment 87E arises out of a problem which is also beginning to occur. I should declare an interest here because it is a problem that is close to my heart: a member of my family has severely impaired capacity and her spouse, who is the only person who can act on her behalf, is becoming older. There is concern about what happens if he cannot act on her behalf and take decisions. At the moment, it is only when the donee loses capacity that others can go to the Court of Protection for a court-appointed deputy. The aim of this amendment is to allow the donee to make some provision so that, in the event of their losing capacity—either temporarily if they have a fall with a fracture, a head injury or have pneumonia, or permanently so they become frail and possibly demented—they can make provision ahead of time in the cold light of day. The alternative is the family, with one family member who lacks capacity and the person who was taking care of their affairs now acutely ill and in crisis, having to go to the Court of Protection to get a court-appointed deputy, which can take some time.

I have discussed this with the Court of Protection, which wants to be helpful in moving things forward, and with Alan Eccles, the Public Guardian, who is extremely sympathetic to the problem and can see that people who took out a lasting power of attorney, or prior to that an enduring power of attorney, and never expected to live as long as they have could now find that the donee is at greater risk of becoming frail than they anticipated. Donors are outliving their prognosis not just by months, but by years and possibly decades.

[Baroness Watkins of Tavistock (CB)]

It strikes me that Amendment 87E would apply not only to this Bill but to other Acts. Does it fit here? I understand the principle of what my noble friend is saying.

[Baroness Finlay of Llandaff]

It could have wide-reaching consequences, but a lot of people who have lost capacity and are in a state of high dependency are already in nursing homes, so they are already being cared for in the system and may be subject to deprivation of liberty. Some of them have long-term continuing funding for their care, but they have been there for a long time and the donee, who is managing all their affairs and advocating on their behalf, is very concerned about their welfare in the event of them failing.

[Lord O’Shaughnessy]

I am grateful to the noble Baronesses and the noble Lord, Lord Hunt, for tabling amendments in this group. I am very aware of the complexity of this issue. For a lay person such as me, some of the terminology can be confusing. I will do my level best to be as clear as humanly possible, but if I fail in that endeavour I will write to noble Lords and explain better what I am attempting to explain now.

The effect of Amendment 83, as the noble Baroness, Lady Thornton, said, would be to confirm in law that a donee of a lasting power of attorney or a deputy appointed by the Court of Protection was unable to consent on a person’s behalf to a deprivation of liberty. If they could provide such consent, the person would not be considered to be deprived of their liberty and no safeguards would need to be provided.

The Law Commission report stated that it was already the position in law that a donee or deputy could not consent to a deprivation of liberty. We confirmed in our response to the Law Commission’s report that the Government agreed with its view on the current legal position, and the Bill does not change the current situation. While the Bill creates a duty to consult with any donee of the lasting power of attorney or a deputy, it does not enable a donee or deputy to consent to the deprivation of liberty on behalf of the cared-for person. In other words, under this Bill the cared-for person would still be deprived of their liberty in those circumstances and would still need to be provided with safeguards to satisfy Article 5, which is of course the whole purpose of DoLS and liberty protection safeguards. In that sense the amendment, with which we agree, would serve only to duplicate existing legislation and is not necessary. I hope I have provided an adequate explanation to noble Lords, but obviously I am willing to set out in more detail exactly why we believe the current situation is not changed by the Bill as it stands.

I turn to the amendments in the name of the noble Baroness, Lady Finlay. Amendment 83ZA would require the Office of the Public Guardian to provide documentation, which may be in electronic form, to identify the donor and donee or donees of a lasting power of attorney and to recall the documentation if the donee’s power is revoked. As the noble Baroness pointed out, this is designed to make it easier for attorneys to provide proof of the existence of a registered LPA. It is right that there ought to be a robust system of proving that there is a valid power. My understanding is that the Ministry of Justice and the Office of the Public Guardian are actively considering how to offer a digital means of providing evidence of a valid LPA, and we expect to bring forward proposals in due course. I am happy to pursue that further with colleagues in that department and that office to understand greater details of their plans and to share those with noble Lords if they are forthcoming, which I hope that they will be.

Amendment 87E, in the name of the noble Baroness, Lady Finlay, would allow the donee of a lasting power of attorney to nominate someone to replace them if they were no longer able to fulfil their duties—I think that means if the lasting power of attorney was no longer able to fulfil their duties—while Amendment 87G would allow a replacement attorney to be nominated by the donor at the time of registering the LPA to take over the power if the donor decides to remove the power from the donee.

I do not need to reiterate to noble Lords just how critical it is to get the law and the rules in this area right; as the noble Baroness, Lady Watkins, pointed out, the rules around this would not apply only to this Bill. It is worth pointing out that there is provision in the original Mental Capacity Act to allow a person making a lasting power of attorney to nominate a replacement in the event that their attorney is unable to continue, but I think the point that the noble Baroness, Lady Finlay, was getting at is that there is a slight chicken and egg situation here: at the point where they no longer have capacity but the person whom they have previously appointed is no longer able to fulfil their role or the cared-for person no longer wants them to do so, they cannot go back in a time machine and appoint someone else—in other words, they cannot know what they do not know. I have just made things really clear by getting all Donald Rumsfeld about it all.

Having said all that, I want to consider if there is a way of unlocking that paradox, but clearly the implications of that would go well beyond the remit of what we are discussing here. I do not want to make any promises that it is not in my power to keep. I would appreciate the opportunity to explore this further so that we can consider how to give the donor more opportunities to have a sense of choice and agency as they think ahead to the future. I would have thought that we must be able to provide for that without creating extra complications. I look forward to taking that up with the noble Baroness and other noble Lords who are interested in the topic. On that basis, I hope the noble Baroness will feel able to withdraw her amendment.

Mental Capacity (Amendment) Bill [HL]

Baroness Finlay of Llandaff Excerpts

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

[Baroness Finlay of Llandaff (CB)]

My Lords, I have Amendments 47 and 50 in this group. They are concerned with the point at which court proceedings are triggered. It is appropriate that there is an ability to appeal, but it is also important that courts are not inundated and that disputes are resolved outside court as much as possible. Going to court should be the last port of call, but it should be accessible and should occur only when other interventions such as mediation have failed.

Sadly, sometimes cases need to go to court, which is why I have worded an amendment to allow the AMCP to consider going to court as part of their role. However, the AMCP must also be able to verify information and meet independently with the primary source—that is, the cared-ford person. That might mean setting up a meeting well away from other people who have previously been involved so that they can form their own view on whether there are other avenues that might be pursued before resorting to the court.

[Baroness Hollins (CB)]

I have added my name to Amendment 49 in the name of the noble Baroness, Lady Barker. My concern is that a failure to meet the person directly might lead to a desk-based review, which would not enable the necessary scrutiny of the appropriateness of the care arrangements.

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Moved by

[Baroness Finlay of Llandaff]

32: Schedule 1, page 12, line 19, leave out “Consultation” and insert “Duty to ascertain wishes and feelings of the cared-for person
(A1) The main purpose of the consultation required under this paragraph is to try to ascertain the cared-for person’s wishes or feelings in relation to the arrangements and the likely impact of the arrangements on the cared-for person’s wellbeing.”

[Baroness Finlay of Llandaff]

My Lords, this group of amendments takes us to the heart of the duty to ascertain the wishes and feelings of the cared-for person. For that reason, I am most grateful to the noble Lord, Lord Hunt of Kings Heath, for adding his name to my amendment, which would rename this part of the Bill, changing a consultation to a duty, and move up this paragraph from lower down:

“The main purpose of the consultation required under this paragraph is to try to ascertain the cared-for person’s wishes or feelings”.


That must be paramount. If we do not make arrangements that fit with and respect the known wishes and feelings of a person—or we make arrangements that cut across the feelings of others and cannot justify them very carefully—we will have failed completely in what we are trying to do. We should be empowering people to live as they want to live as much as possible while accepting that we need some restrictions in place.

That is why this group of amendments would also move the cared-for person to the top of the list of people to be consulted and make it clear that the professional responsible for the care plan needs to undertake the consultation. That will then inform what is happening and how the care is to be organised on a day-to-day basis and in the longer term, as well as ascertain whether the restrictions that may be put in place are necessary and proportionate in the light of knowing the cared-for person’s wishes and feelings.

It is important to remember that people do not object only actively. They may signal objection by becoming more withdrawn or less active. They may start eating less or there may be changes in toileting and so on—all of which can signal that someone is unhappy. All these changes should be considered in thinking about whether somebody is objecting in the broadest sense to whatever has been provided for them. They may well signal that their wishes and feelings are not being adequately respected. I beg to move.

[Baroness Hollins]

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

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

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


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

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

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[Baroness Stedman-Scott]

I thank all noble Lords for their important contributions to these amendments. I agree completely with the noble Baroness, Lady Finlay, about the importance of ascertaining the cared-for person’s wishes and feelings when consulting as part of the liberty protection safeguards processes. Sometimes it is more important to listen to what is not said or expressed over and above that which is said. Watching people’s behaviour and demeanour can tell us a lot about how they are feeling. The noble Baroness, Lady Watkins, gave us a good example of somebody who lost their parents and was terribly distraught about it, although what was causing him most angst was being able to see his sister only for short periods because of the distance travelled. We must make sure, in taking through this Bill, that we do everything we can to read those signs and that people are empowered to make the best decisions.

On care home managers completing the consultation and how we ensure that alternatives are considered, I can say to the noble Lord, Lord Hunt, that a wide range of people are consulted. Previous consultations conducted by professionals often relied on things that were not meaningful or in the best interest of the individual. We want the least restrictive as a principle—a requirement of Article 5 in case law—that must be considered and will be set out in the code of practice. The code of practice will be very important.

I say to the noble Baroness, Lady Barker, that the care home manager would consider whether a decision was appropriate and the decision would be reviewed by the responsible body. Any family member, IMCA or appropriate person could challenge a decision not to consult the cared-for person. The Government are committed to making sure that the consultation around the cared-for individual is at the heart of everything. We must move heaven and earth to make sure that we understand exactly what they want and that the consultation is respectful in every way.

The Bill already outlines that the main purpose of the consultation is to ascertain the cared-for person’s wishes and feelings. This is to ensure that the liberty protection safeguards are consistent with the focus of the rest of the Mental Capacity Act, which places the wishes and feelings of the person, even if they lack capacity, at the heart of the process.

The noble Baroness is also right to highlight the importance of considering the impact of the arrangements on the person’s well-being. Similarly, we are also clear that we expect the impact of the arrangements on the person to be addressed when undertaking consultation. However, the purpose of the consultation would be to consider the impact from the person’s point of view. This is crucial to how the Mental Capacity Act works.

The concept of well-being is not mentioned in the Mental Capacity Act. It is a legal concept which has particular meaning under the Care Act and the Social Services and Well-being (Wales) Act. We are concerned that it would cause confusion if this concept were inserted into the liberty protection safeguards.

However, the liberty protection safeguards will be in place to support living and will be positive for a person’s well-being. The accompanying code of practice will outline how the model works within wider care provision, including the Care Act, which has duties in relation to promoting well-being.

The amendment in the name of the noble Baronesses, Lady Hollins and Lady Finlay, explicitly requires that the cared-for person be consulted. Noble Lords raised this issue on our previous day in Committee and I know that there is enthusiasm for this proposal, as it is felt that it will more clearly place the person at the centre of the determination of their wishes and feelings.

The Government have also heard very clearly that noble Lords felt that the person themselves must be consulted. Again, I agree. If we are to secure the improvements that we want, it is essential that the person and their voice, wishes and feelings about any proposed arrangements are placed at the heart of this model. We will make sure that the Bill reflects this. I am grateful for the expert views of noble Lords in helping to improve the Bill to put this beyond doubt.

I agree with the noble Baroness, Lady Hollins, and the noble Lord, Lord Hunt, that it is important for those deciding whether an authorisation for deprivation of liberty should be given to consider whether any less restrictive options are available. Considering less restrictive alternatives is also an important aspect of the wider Mental Capacity Act. For example, the fifth principle of the Act requires decision-makers to have regard to less restrictive options. Nothing in the Bill changes this. The code of practice will set out how the liberty protection safeguards will work within the wider framework of the Mental Capacity Act and the care landscapes more widely.

Respectfully, therefore, I maintain that there is no need to add the words suggested by the amendments because they already form an integral part of the assessment process. We have made clear that the main purpose of the consultation duty is to ascertain the person’s wishes and feelings in relation to the authorisation, and this can include the person’s views about acceptable levels of restrictions.

For example, a person might wish to receive care in a care home where they have freedom to spend time in the community rather than in a care home where there is less freedom to do this. This might be because the conditions are less restrictive. This is an essential part of the liberty protection safeguards and is delivered through the assessment process. The noble Lord, Lord Touhig, made a very valid point when he asked whether we would want this for us. We must make sure that we treat people and respect them in the way we would like to be treated and respected ourselves.

I hope I have been able to provide a satisfactory explanation, but if there are outstanding concerns, I am happy to discuss them further. I trust that the noble Baroness will be able to withdraw her amendment.

[Baroness Finlay of Llandaff]

My Lords, I must admit that during the Minister’s very positive response, my hopes were up that she was going to accept the amendment and the change of title of this paragraph in the new Schedule. The reason I say that is that words matter: they set the tone. It would be very useful to be able to discuss this further so that we might take out the word “Consultation”, which has connotations of medical consultations and other things, and that we might state on the face of the Bill as a heading that there is a, “Duty to ascertain the wishes and feelings of the cared-for person”.

The noble Baroness, Lady Hollins, reminded us of the importance of wishes and feelings and that we should not slip back in time to old-fashioned, awful institutional care. The well-being Act in Wales was behind some of the wording as well, and the reason for moving that part of the Bill higher up.

The noble Baroness, Lady Barker, asked some very valid questions. Best-interest decision-making should be a process, not a one-off, and for that process to happen, it is very important that the person is consulted because their previously expressed wishes and feelings might no longer be their wishes and feelings now that they are in a different situation, but they might need help expressing those wishes and feelings as they are now. That process should also include their beliefs and values, some of which they might still hold on to and some of which they might have abandoned over time. There are other factors that the person might be likely to consider if they were able to consider them: their current views and past views might be expressed by others who know them well and care about them.

I hope that we can pursue the discussion further, but, at the moment, although I will withdraw the amendment, I would like to reserve the right to come back to this on Report, because unless we get wishes and feelings up there, in bold type as a heading, we might well find that, inadvertently, we fail the very people for whom we are arguing. I beg leave to withdraw the amendment.

Amendment 32 withdrawn.

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[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.

[Baroness Barker]

When the Minister responds, will she confirm the point made to us by a number of stakeholders that harm to others, rather than harm to self, which is the basis of decision-making in best interests, is included in the Bill—because it is not explicitly ruled out and it was in the Law Commission’s proposals. If that is the case, that is a very significant change. The number of people included may well differ solely for that reason.

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Moved by

[Baroness Finlay of Llandaff]

50B: Schedule 1, page 13, line 42, at end insert—
“(aa) any arrangements that are not authorised or are authorised subject to conditions,”

[Baroness Finlay of Llandaff]

This group of amendments relates to the authorisation record. I have added an additional criteria in Amendment 50B because there may be arrangements put in place after an initial authorisation has begun—or that were subject to conditions—and parts of the authorisation may need early review. Amendment 62A is designed to ensure consistency—the care home manager will not do the assessments but will arrange them. Amendment 58B relates to renewal; if part of an authorisation no longer has effect it must be reassessed from scratch, not simply renewed. Amendment 58C requires that original evidence is submitted, not a second-hand report. It would allow the responsible body to see the authentic assessment rather than an interpretation of any original material.

[Baroness Barker]

My Lords, I am afraid that I think some of the amendments standing in my name have been wrongly grouped. I am sorry; I have been busy this afternoon going through everything else and I am now a bit stuck regarding the procedure and what I should do. I will speak to them, although I am rather reluctant to start this group.

[Baroness Barker]

But am I right in thinking that if I do not speak to my amendments today, they will automatically fall?

[Baroness Finlay of Llandaff]

It might be of assistance if I intervene here. If the noble Baroness is referring to amendments in the group beginning with Amendment 58A, I understand that if she does not speak to them now, they can be dealt with in the next group.

[Lord O'Shaughnessy]

I am no expert in parliamentary procedure but my understanding is that, as they come after the amendment we are considering now and indeed the one that we would consider next, they can be retabled.

[Lord O'Shaughnessy]

I am grateful to the noble Baroness, Lady Finlay, for initiating this discussion. Clearly the purpose of her amendments is to make sure that an authorisation cannot be renewed if it wholly or in part ceases to have effect. In some cases, an authorisation will not be renewed if in part it is no longer valid, but there might be other cases where minor changes to the restrictions are needed and that should not prevent an authorisation being renewed. We want to provide further detail in the code of practice and I would appreciate the opportunity to work on that with her.

The noble Baroness has also tabled amendments outlining that authorisation records should detail when arrangements are not authorised or if they are authorised with conditions, and that in care home cases responsible bodies should consider other relevant information, as well as information provided by the care home manager. I can tell her that in some cases if arrangements are not authorised, it might be useful to include them in the authorisation record. However, given the debate that we had on the previous grouping about the general trend towards the inclusion of data or information within records that are then made available to patients, their families and so on, I want to reflect on whether they should always be included and I will come back to that on Report.

The Bill allows the responsible bodies to consider information other than that provided by the care home manager, and further detail on the circumstances and kinds of information will be provided in the code of practice. On that basis, I hope that the noble Baroness is reassured and will feel able to withdraw her amendment.

[Baroness Finlay of Llandaff]

I am most grateful to the Minister for that clarification. I agree that some parts of this would be better in the code of practice than in the Bill, particularly because they might need modification as experience develops. If they are in primary legislation, we are effectively stuck with them for a time, whereas otherwise they can be altered. Therefore, I beg leave to withdraw the amendment.

Amendment 50B withdrawn.