Integration White Paper

Baroness Finlay of Llandaff Excerpts

Thursday 10th February 2022 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, before I ask my question, perhaps I might formally apologise to the House for an error I made last night in Committee on the Health and Care Bill in responding to the debate on my Amendment 287 on dispute resolution and children’s palliative care. I had missed email correspondence from Together for Short Lives prior to the debate, in which the organisation had offered to discuss my amendment with me. I hope the House can accept my sincere apologies and regret at my inaccuracy. I have had helpful correspondence with the charity today.

I turn to today’s Statement. In my role as chair of the Mental Capacity Forum, I welcome the mention in item 5.14 of training in mental capacity, because there is a tremendous need for training at every level.

I also welcome the concept of personalised care, but I am concerned that the paper before us just does not go far enough. We need to document what matters to a person, and that needs to be an ongoing dialogue, not a tick-box exercise. If we know what matters to a person, that can inform best-interest decisions if the person loses capacity, and it is important for informal carers and family members to know that beforehand. Personalised care must include emotional care.

I am also concerned that there is nothing here about training the unpaid carers. They do not just need training in physical aspects of care; they need emotional training and training in how to de-escalate their own emotional stress, particularly when dealing with mental health issues in the person that they are caring for. There is nothing here about child carers and how information goes to a school that a child is a carer and may be under tremendous stress—or it may be that I have missed it in the documentation.

I hope the paper will stress the importance of people being listened to, which will inform decisions when deterioration happens. I would welcome the Government’s comment on how they are going to train enough people and instigate training across the board, both in sensitive listening skills and in achieving the high aspirations that I think the paper has attempted to set out.

[Lord Kamall (Con)]

I thank the noble Baroness for her clarification and for notifying me earlier about the issue that she apologised for. One of the issues for us is that we want to make sure that if all the parts of the healthcare and social care systems are talking to each other, and there are accountable people, we hope that people will not fall through the cracks and that there is a multi-agency approach. It will be difficult to be overly prescriptive here, because what would work in one area might not work in another.

The point that the noble Baroness makes about training is critical. In many debates in this House, we have understood that we need to take the social care workforce seriously and give support to unpaid carers of whatever age, whether they are children or family members. Sometimes they are doing it because they do not want their loved ones to go into a home and sometimes they just need a bit of respite. We are looking at a number of issues around carers—first, unpaid carers but, secondly, making sure that being a carer is a rewarding career and is not seen as being at a lower level than, say, a nurse in the health service.

One reason for having a voluntary register, for example, is to understand the landscape and then put in place proper and different educational pathways, and other pathways, into care. Having national qualifications at levels 4, 5 and 6 and so on will show parity of esteem and that this is a worthwhile career. We have the Made with Care campaign to start to encourage more people back. We are looking at a number of different ways to make sure that carers are not just forgotten. If they work in care homes, that is fine, but we want to make sure that there is a real career structure for them, and also that they can move between health and social care, both ways. There may well be nurses or doctors who want to move across. We have to make sure that going from one place to another is not seen as disadvantageous in any way and that the system is truly joined up.

Of course, this is all top level and shows our ambition to integrate. We do not want to be overly prescriptive; decisions have to be made at place level.

Covid-19: Lateral Flow Tests

Baroness Finlay of Llandaff Excerpts

Thursday 10th February 2022 Lords Chamber

Asked by

[Baroness Finlay of Llandaff]

To ask Her Majesty’s Government how many COVID-19 lateral flow tests are awaiting approval under the Medical Devices (Coronavirus Test Device Approvals (Amendment) Regulations 2021; how many have been approved; and how many that already hold Medicines and Healthcare products Regulatory Agency approval will fall if not re-approved by the extended deadline of 28 February.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall)]

As of 3 February 2022, 87 lateral flow devices were in the CTDA approval process, and none have been approved—

[Lord Kamall (Con)]

I am sorry, this is a 2.45 am hang- over. Lateral flow devices from 20 CTDA applications are currently included on the temporary protocol. If we interpret the phrase “Medicines and Healthcare products Regulatory Agency approval” as CE marking, we are currently considering proposals to ensure the continued supply and usage of tests beyond 28 February and will announce plans once a decision has been confirmed.

[Baroness Finlay of Llandaff (CB)]

I am grateful for the Minister’s response despite the late hour of last night’s debate. I am concerned that the information I have is that there are still 200 tests waiting, 46 have been assessed and validated at Porton Down, and the process is not well-aligned with the MHRA processes. What is being done to bring those processes back in line? What is being done to bring forward applications from devices that provide a differential diagnosis between Covid and influenza? These are already being used in Europe, but I understand that none are available in the UK because they have been held up in the validation process.

[Lord Kamall (Con)]

I should perhaps start with some background on this and why we have reached the situation we are in. Her Majesty’s Government began the large-scale procurement of Covid-19 test kits at the height of the pandemic. To ensure supplies for the universal testing offer, Porton Down assesses tests offered to Government. It found that three-quarters of those offered failed to meet their stated performance in their instructions for use. For most testing technology, the manufacturer needed only to do self-assessment to meet the CE marking rules, but clearly, when they were tested, they were not meeting those standards. We considered that the current standard was insufficient and did not keep bad tests off the market. That is why we had a public consultation in April that showed strong support for a more rigorous regime. In terms of avoiding a cliff edge, as it were, if they have not been validated, we are looking at solutions.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 1 & Committee stage
Wednesday 9th February 2022 Lords Chamber

[Lord Stevens of Birmingham (CB)]

Briefly, I also support these amendments, including the Government’s comprehensive amendment, but I was spurred into action by the noble Baroness, Lady Bennett. It is worth saying that when it comes to public trust, a survey of 28 countries conducted at the end of last year found that British doctors were more trusted by people in this country than doctors in any of the other 27, so we start from a well-founded position of high trust. However, trust in a profession is of course founded on the basis that people will act in a way that puts the interests of the person they are looking after first, and these amendments help to deliver that.

I want to use the opportunity to try to draw the Minister out slightly on a couple of questions supplementary to those which my noble friend Lord Patel raised. Sunlight may indeed be the best disinfectant. but we have two types of shade going on at the moment. The first is that, through the voluntary register which the ABPI established in 2017, we have just under a third of eligible doctors who are not reporting. Therefore, obviously to the extent that the Government commence these amendments on a mandatory basis, that will deal with that aspect of shade; the 68% will become 100%, which will be most welcome.

The second type of shade relates to the scope of the payments that have to be declared. Here, I think the Government’s amendment is potentially very suitably broad. However, it would be wonderful to hear the Minister confirm that it will cover payments to all NHS bodies, not just to trusts or indeed teaching hospitals; that primary care will be in scope; that it will cover the independent sector as well as the NHS; that it will cover payments made to patients’ organisations; and whether, in time, the Government will consider extending it to payments made to health professionals other than doctors. I conclude by simply reporting that when you ask people in this country which profession they most trust, the answer is actually not doctors; it is nurses.

[Baroness Finlay of Llandaff (CB)]

My Lords, I have my name on this amendment. I will not repeat all the points made by other people so far, but I point out that using the words “shall” or “must” avoids any argument over threshold. The problem with having a word that is not definitive is that there would be arguments over what would and would not have to be declared.

To put a slightly positive note on the whole situation, I say from clinical experience that patients want to go into trials and to contribute to the level of knowledge. Very often, people who are seriously ill will say, “I know that I won’t benefit from it, but I hope that other people will by me going into this trial”. But they want to know that the trial is properly conducted, that everything is open, that nobody is profiteering from their generosity and that they are genuinely contributing to the body of knowledge across the country. When people who I know socially contact me because they have been given a potentially devastating diagnosis and have been referred to somebody, the question is always, “Are they the best in the field?”, which is often followed up with, “Are they doing research in the field?” and “Are they completely up to date?” So often, when people realise that they are deteriorating, they will ask whether there is a trial that they can be entered into.

This goes much further than just being sunlight. This amendment would support future endeavours and innovation in the country and would encourage people to enter into studies.

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Moved by

[Baroness Finlay of Llandaff]

287: After Clause 148, insert the following new Clause—
“Dispute resolution in children’s palliative care
(1) This section applies where there is a difference of opinion between a parent of a child with a life-limiting illness and a doctor responsible for the child’s treatment about—(a) the nature (or extent) of specialist palliative care that should be made available for the child, or(b) the extent to which palliative care provided to the child should be accompanied by one or more disease- modifying treatments.(2) Where the authorities responsible for a health service hospital become aware of the difference of opinion they must take all reasonable steps—(a) to ensure that the views of the parent, and of anyone else concerned with the welfare of the child, are listened to and taken into account;(b) to make available to the parent any medical data relating to the child reasonably required to obtain evidence in support of the parent’s proposals for the child’s treatment (including obtaining an additional medical opinion); and(c) where the authorities consider that the difference of opinion is unlikely to be resolved entirely informally, to provide for a mediation process, acceptable to both parties, between the parent and the doctor.(3) In the application of subsection (2) the hospital authorities—(a) must involve the child’s specialist palliative care team so far as possible; and(b) may refuse to make medical data available if the High Court grants an application to that effect on the grounds that disclosure might put the child’s safety at risk having regard to special circumstances.(4) Where the difference of opinion between the parent and the doctor arises in proceedings before a court—(a) the child’s parents are entitled to legal aid, within the meaning of section 1 of the Legal Aid, Sentencing and Punishment of Offenders Act 2012 (Lord Chancellor’s functions) in respect of the proceedings; and the Lord Chancellor must make any necessary regulations under that Act to give effect to this paragraph; and(b) the court may not make any order that would prevent or obstruct the parent from pursuing proposals for obtaining disease-modifying treatment for the child (whether in the UK or elsewhere) unless the court is satisfied that the proposals—(i) involve a medical institution that is not generally regarded within the medical community as a responsible and reliable institution, or(ii) pose a disproportionate risk of significant harm to the child.(5) Nothing in subsection (4) requires, or may be relied upon so as to require, the provision of any specific treatment by a doctor or institution; in particular, nothing in subsection (4) —(a) requires the provision of resources for any particular course of treatment; or(b) requires a doctor to provide treatment that the doctor considers likely to be futile or harmful, or otherwise not in the best interests of the child.(6) In this section—“child” means an individual under the age of 18; “health service hospital” has the meaning given by section 275 of the National Health Service Act 2006 (interpretation);“parent” means a person with parental responsibility for a child within the meaning of the Children Act 1989.(7) Nothing in this section affects the law about the appropriate clinical practice to be followed as to—(a) having regard to the child’s own views, where they can be expressed; and(b) having regard to the views of anyone interested in the welfare of the child, whether or not a person concerned within the welfare of the child within the meaning of this section.”

[Baroness Finlay of Llandaff (CB)]

My Lords, this amendment has been several years in gestation. It dates back to the case of Charlie Gard in 2017. There have also been other cases that suggested we must do better than rush to the courts, with all the anguish that causes to parents and clinicians alike, let alone the expense to the NHS and others. That is why I am proposing that there should be independent mediation where there is a serious disagreement between loving parents and the clinical team caring for a child who is not Gillick-competent.

Difficulties arise when the child’s prognosis seems hopeless to clinicians but the parents do not share that view and want to know that they have tried everything. The clinicians may feel that the best interests of the child would be for the child to be allowed to die, but the parents can perceive this as life being ended, even though the child would have already died without all the care and interventions that had been put in place. In other words, when death occurs, the child dies of their underlying condition. The clinicians have not euthanised the child. However, pressures in the media towards doctors administering lethal drugs and euthanasia have portrayed death as a solution, and there is a perception that our overwhelmed NHS is desperate to clear beds, save money and, sadly, even cover up shortcomings.

However, no one has interests when they are dead; they are a corpse. By contrast, the parents feel that any improvement is worth having, and that it is in the best interests of the child to continue to experience their love and affection and to try a novel therapy that seems, on balance, possibly to do more good than harm—that is, it does not cause significant harm to the child—and, if there is no improvement, it is easier for them to accept the natural death of their child.

In Charlie’s case, a novel treatment seemed to offer hope, a nucleoside powder to be added to feeds of mitochondrial depletion syndrome. This did not involve invasive procedures and was estimated by New York-Presbyterian Hospital and Columbia University Irving Medical Center’s Dr Hirano to have a 56% chance of success. That is important because it is over 50%. In 13 out of 18 children with TK2 mitochondrial depletion it had appeared to be beneficial but it had not been tried in RRM2B, the variant that Charlie had. This was not a distressing invasive treatment from a dubious medical centre, and the parents would gladly have had Charlie as part of an N of 1 trial, accepting failure but knowing that they had done everything.

The total cost of a three-month trial of nucleoside powder would have been about £3,000. Contrast that with the costs of over £250,000, made up of £205,225 costs to Great Ormond Street Hospital, almost £35,000 that his parents had to fundraise for, and £32,500 spent by Cafcass. That seems to be the norm. Cafcass also reported that in 2016 it was involved in 18 parent-doctor disputes that ended up in court. If these costs are indicative, that suggests around £4.5 million from the NHS each year.

No one should underestimate the intense emotional anguish of these parents in such cases, nor the stress and difficulty for the clinical team. The requirement that the parents can seek a second opinion means that they can do so swiftly, with full access to their child’s clinical record. This recognises the speed with which children can deteriorate when very ill.

Currently a second opinion may be sought only by a clinician. This part of the amendment would put the parents on an equal footing to ensure that they could seek one too. If there is a dispute between those with parental responsibility then, as now, the court would have to be involved. It is for the courts to veto inappropriate demands, and no clinician would ever be forced to administer a treatment that they did not view as being in the best interests of the child.

Rather than clinicians and parents being pitted against each other, with press interest and the risk of campaigning groups further polarising views, the amendment proposes that independent mediation must be offered. It needs to be independent to remove the suspicion that the mediator is entering the discussion biased towards the clinical establishment and away from the parents. Mediation is different from arbitration; it must be voluntarily entered into, using mediation processes designed to avoid legal disputes. It may help the parents to realise that the clinicians’ decisions are right after all and in the best interests of the child. Indeed, such realisation is evident in some of the very sensitive judgments given by the court.

The amendment would focus on the balance of probabilities. There is no absolute line because each case is different. If the dispute remained intractable, the case would proceed to the court, where the court would have to take into account all the evidence and consider whether the risk was significant. “Significant” is not a precise medical term; it would leave it to the court to decide whether the risk of harm involved in the parents’ proposal was sufficiently significant to interject across their parental responsibility and prohibit the proposed treatment. It would create the legal test of “disproportionate risk of significant harm” to assess the balance of factors, replicating the legal test already used by social services under the Children Act 1989 to consider whether to remove the child from their parents’ care. This legal test would sit before, rather than replace, the current “best interests” test, which is very broad and can be subject to different interpretations.

Contrary to the misleading briefing that some Peers may have received, the legal test in the amendment would not allow a person with parental responsibility to force any intervention. The court must always be, and would remain, free to objectively judge the issues. In the rare cases where disputes still reach litigation, access to legal aid would ensure families can access justice without being forced to rely on outside interest groups to fund the case.

The aim of this amendment is to solve some major problems for the Government. It would ensure resolution of some distressing prolonged disputes between loving parents and clinicians, disputes that benefit no one, and would reduce the likelihood of cases escalating to the courts and the millions of pounds in litigation costs. I beg to move.

[The Deputy Chairman of Committees (Lord Geddes) (Con)]

I advise the Committee that the noble Baronesses, Lady Brinton and Lady Masham of Ilton, have indicated that they wish to take part remotely. I call the noble Baroness, Lady Brinton. I am sorry, I thought it was in alphabetical order. I shall therefore call first the noble Baroness, Lady Masham.

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[Earl Howe (Con)]

My Lords, the noble Baroness, Lady Finlay, has brought a vital and sensitive debate before the Committee, for which I for one am very grateful. At the heart of each of these difficult cases is, as she said, the well-being of a child, and that principle has to remain uppermost in everyone’s mind. While the views of parents and guardians are routinely considered in everyday care, occasionally difficult disputes will arise. When they do, we should carefully consider how best to protect the interests of the child. I will start by saying that I fully agree with the noble Baroness that any failure to listen to the concerns of parents or a guardian would be bad practice.

However, I have a concern about the practical impact of this amendment. In cases of the care of children with life-limiting illnesses, the amendment would place the views of parents and guardians above those of clinicians and—let us be clear—the courts, which have a statutory obligation to act in the best interests of the child. Establishing a default presumption in favour of the parents’ views would fundamentally change the current balance. It would move away from the impartial assessment of the individual child’s best interests being paramount based on all the evidence in each specific case.

I understand the view that parents know what is best for their child and their wishes should be paramount. Sadly, though, I am afraid that I cannot fully agree with the proposition advanced in the amendment. It is sometimes the case that desperate parents in these tremendously difficult circumstances are subject to the flattering voice of hope and, as a result, are not acting in a way that is necessarily in the best interests of their child.

To protect the child, it is right that when every effort at resolution has been unsuccessful there is recourse to a judicial process that can impartially assess all the evidence as to what treatment is best for the child. I also fear that it would be difficult for a clinician to determine, in the wording of the amendment, “anyone else” who has an interest in a child’s care. In considering the provisions of the amendment, I note that a child’s medical data can already be provided to parents following a subject access request, so we do not feel that legislation here is necessary. I absolutely agree that specialist palliative care teams should be part of the multidisciplinary team for any child or adult with a complex life-limiting illness; their involvement is an integral part of good practice, and I would expect referrals in such situations. However, I do not agree that it is necessary to put that into law.

Let me say something about mediation. I listened with care to my noble friend Lord Balfe. We know that mediation can and often does play a vital role in facilitating better communications and creating a space where voices on both sides of a dispute can be heard in a non-adversarial way. Unfortunately, that does not provide a solution in every dispute. The Government are supportive of the many excellent mediation schemes already available, including through charities and the private sector. We agree that parents and clinicians should be able to access such schemes where they wish to do so. However, we are not convinced that legislation is the answer to these thankfully rare but nevertheless tragic cases.

The current lack of statutory prescription means that mediation can be tailored specifically to meet the individual needs of families and their children, clinicians and hospitals, reflecting the unique circumstances of each case. There is currently a wide range of work and research into avoiding such protracted disputes and improving the approach to managing conflicts, with the aim of promoting good, collaborative relationships between parents and healthcare professionals to seek resolution without lengthy and costly legal battles. Furthermore, on those rare occasions where disputes are heard before a court, the amendment seeks to extend legal aid. Legal aid is already available for best interests cases, albeit subject to a means and merits test.

I understand the strong views on the amendment across the Committee. I understand that these issues are ethically charged and I take them seriously. However, I also believe that the current approach properly balances the views of parents and guardians with those of clinicians and, above all, with the paramount importance of the best interests of the child in question. The sensitivities around this subject are acute but I hope that what I have said has clarified why I do not feel able to accept what I know is a well-intentioned amendment.

[Baroness Finlay of Llandaff (CB)]

My Lords, I cannot hide my deep disappointment at the response from the Government, because I think this situation will only get worse unless we recognise the difficulty of decision-making when you are faced with a child whose prognosis is poor, who has a very rare condition, where nobody has a test to predict what will happen, and where the parents feel that they are not being listened to.

Currently in the NHS we have clinical teams that change rapidly. The one person—often—who has continuity and has seen the child day after day is the mother; sometimes it is the father who is with the child all the time. But you get different clinical teams, and you may have a gap of five days between one doctor visiting and coming back, and they may say: “Oh my goodness, what a change.” But when you have a handover, you do not get a complete picture.

Vaccination: Condition of Deployment

Baroness Finlay of Llandaff Excerpts

Thursday 3rd February 2022 Lords Chamber

[Lord Kamall (Con)]

I hope that the noble Lord will forgive me, but I had a lot of meetings on the Bill today. When the questions came in and I saw the original answer, to be perfectly frank, I was not content with it and I pushed back, which is why I need more time to answer the question.

We are completely clear. We intend to revoke the requirement in its entirety for both care homes and the health and wider care sectors. The care home requirement has been in force since 11 November, but the requirement for health and wider social care was not due to come into force until 1 April. This means that first doses would have been needed by today in order for people to be fully vaccinated by 1 April. We wrote to the sector to clarify how the 3 February deadline would be impacted by the Government’s intention to revoke the regulations. While this particular question was specific to wider social care settings, not care homes, the letter was clear that we intended to revoke them for both care homes and wider social care.

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to the Minister for the way in which he has answered these questions, because he has done so in a very nuanced way and this is a difficult topic to deal with. Can he reassure me that there will be no let-up in the effort to understand the fears behind why people are vaccine hesitant, particularly when they are working in these settings, so that they can change their mind without any sense of losing face? Will the general infection control measures that have been put in place, such as handwashing, social distancing and ventilation, be maintained? It is not only Covid that is transmitted from one person to another; there have been thousands and thousands of cases where patients have acquired a nosocomial infection in hospital. One of the most important measures—particularly for something like MRSA—has been handwashing in between treating every patient. Any let-up in these procedures could well mean that we would slip back to the bad old days of multiple wound infections on surgical wards.

[Lord Kamall (Con)]

As ever, the noble Baroness is absolutely right. Once again, I thank her personally for her frequent advice and questions, based on her years of experience. This gives me the opportunity to be quite clear: just because we are intending to revoke VCOD does not mean that we should let up in the fight against this virus. We need to continue to be vigilant, to wash hands, to respect space, and we hope that many people will continue, as in this Chamber, to wear face masks in crowded places and to ventilate areas, particularly when you are with people that you do not know and do not normally associate with. We should not give up on those; in fact, some of those measures, especially handwashing and others, are good common sense anyway, whether we have a virus or not. We hope that one of the lessons from this whole Covid experience has been the need for better hygiene and for us to be more aware. We cannot yet let up. We may have revoked VCOD, but it is really important that we continue to battle against this virus.

On the first question, about understanding the very real concerns, as the noble Baroness said earlier, I do not think we should simply categorise people as anti-vaxxers or pro-vaccine and virtuous; I think we need to understand their reasons. I had conversations this week when I was chairing the round table with local community organisations and I made the point to them that we want to learn from them. It is all very well for me, as a Lords Minister, to say this, but they understand much better in the community. Sometimes, it is a lack of trust. Sometimes, there are historical trust reasons. Sometimes, it is people’s personal experience. Noble Lords will have heard the recent story about the police, for example: it does not exactly engender trust in figures of authority within certain communities. It just shows the spillover effect of all these issues—discrimination, racism, but also lack of trust—and we have to be quite clear that we understand individual communities. Sometimes, even though they are in the same ethnic community, they may live in different parts of the country and respond in quite different ways. It is very easy to group people and say, “Oh, all BME, all Asians or all disabled people feel this way.” These people are individuals, and we need to understand their concerns.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 2 & Committee stage
Monday 31st January 2022 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to the Minister for introducing these amendments as he did and for giving us the assurance that John Baron, who had worked so hard on all of these issues around cancer care and cancer outcomes, has been fully consulted and is fully supportive of them. I was heartened to hear his stress on early diagnosis. All too often at the moment, patients are diagnosed in emergency departments when presenting late because their condition, for whatever reason, has been missed. We certainly need more early diagnostic tests to be available.

I am also grateful to the noble Lord, Lord Moylan, for speaking about a cancer which, in my experience in palliative medicine, is often within our domain. Indeed, I hope that the Minister might be able to find a way of supporting my colleague Professor Katherine Sleeman at King’s, who wants to establish a What Works centre, for a remarkably small amount of money, in order to roll out best practice in the way that the noble Lord, Lord Moylan, recommended. I do not expect the Minister to answer that now—perhaps we can discuss it later—but there certainly is a need to roll out best practice widely, not only from the cancer centres but out into the cancer units and beyond those to the general NHS.

Up until now we have had too much of an emphasis on process. This switch in emphasis to outcomes is most welcome; I expect everyone to strongly support these amendments.

[Lord Aberdare (CB)]

My Lords, I too am pleased to speak in support of the amendment addressing pancreatic cancer tabled by the noble Lord, Lord Moylan, to which I have added my name. I am grateful to the noble Lord for sharing a draft of his speech with me so that I have no need to test your Lordships’ patience by repeating facts and arguments that he and, indeed, the noble Baronesses, Lady Morgan and Lady Finlay, have already stated so tellingly.

I shall just emphasise a couple of points. I imagine that most, if not all, of your Lordships either know or know of someone who has died of this horrific cancer. Few survive more than a few months, unless they are lucky enough to be among the small number—I think it is about two in five people—whose cancer is diagnosed early enough to be operable. I find it quite shocking that the UK still lags so far behind other countries; as we heard, it is 29th out of 33 countries for its five-year pancreatic cancer survival rates. Research spending on pancreatic cancer is scarcely a quarter of that on leukaemia, for example, and supports correspondingly few researchers and projects. Hopefully, the noble Baroness’s friend may get some more of that.

There is a sort of vicious circle: because pancreatic cancer is so deadly, few patients are fit enough for long enough to take part in clinical trials, and few researchers are attracted to specialise in a condition that is widely regarded as a death sentence. The noble Lord’s amendment would build on the welcome audit of pancreatic cancer that he mentioned, seeking to ensure that its findings are regularly published, that they contribute to better information about pancreatic cancer and lead to specific action to address the issues identified—hopefully, the action may happen first and the audit later—while at the same time seeking to increase provision of PERT through national guidance and regular reporting.

Like the noble Lord, I wanted to mention that there are similar issues with other rare and aggressive cancers in this part of the body, such as bile duct cancer, and these too are often diagnosed too late for successful treatment. Even when surgery is available, the prognosis may be poor. Ideally, there should surely be an integrated approach to expedite diagnosis and treatment for all these cancers, and better information to help GPs and other healthcare workers to recognise their symptoms.

I very much hope that the Minister can give some reassurance on how the system being created by this Bill, including the revised NHS mandate on cancer outcome targets, will help to address the challenges of pancreatic and related cancers with some urgency, so that we can at last start to narrow the gap with other countries in treating them. I also very much support the government amendments that broaden the range of factors covered by cancer outcome objectives.

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[Lord Sharkey (LD)]

My Lords, as the noble Baroness, Lady Brinton, said, I have given notice of my intention to oppose the Motion that Clause 136 stand part. This clause is yet another example of the Government’s abuse of delegated legislation and the avoidance of any meaningful parliamentary scrutiny. It is also a clear and obvious breach of an important constitutional convention.

Clause 136 amends the Healthcare (European Economic Area and Switzerland Arrangements) Act 2019, which started off life as the Healthcare (International Arrangements) Bill, as we just heard. It would enable the Government to implement healthcare agreements with countries outside the European Economic Area and Switzerland. The exercise of the powers in this clause is through regulations subject only to the negative procedure. The department points to the 2019 Act as for seeking these powers, despite what we just heard from the noble Baroness, Lady Brinton.

During the passage of the then Bill in 2018-19, the Government justified or tried to justify taking the relevant powers as the need for speed and flexibility in the extraordinary circumstances of the EU withdrawal process. Parliament did not accept the provisions in the original Bill that the powers should be geographically and temporarily unlimited. After interventions by Parliament, the powers ended up being confined to the EEA and Switzerland and being sunsetted.

The department may be correct to state that the Secretary of State currently lacks the necessary powers to implement reciprocal healthcare agreements with countries outside the European Economic Area and Switzerland. However, this does not mean that there is currently no way to implement such agreements. They could and should be implemented by primary legislation. This would be in keeping with a long-standing constitutional convention that, outside the exceptional case of making provision for EU law, international legal agreements that make changes to UK law are given domestic force by an Act of Parliament. This ensures proper parliamentary scrutiny.

Our committees have pointed out breaches of this convention to the Government on several recent occasions. The last occasion was the proceedings of what was originally the Healthcare (International Arrangements) Bill, as I have just mentioned. Before that, the DPRRC commented on the breaches of this convention in the Professional Qualifications Bill in May 2021 and the Private International Law (Implementation of Agreements) Bill in March 2020. The Constitution Committee commented on the same Bill in its May 2020 report and concluded that:

“It is inappropriate for a whole category of international agreements to be made purely by delegated legislation.”


This is exactly what the Government are proposing in Clause 136.

The department does not address why such international healthcare agreements could not be implemented by primary legislation. We could try to remedy this abuse of delegated powers and breach of convention, as we did with the 2019 Act, by limiting their application and by sunsetting provisions. But, without a clearer understanding—or indeed any understanding—of exactly what agreements the department intends to use these powers for, it is not really possible to limit the power as we did then. The powers could also be sunsetted, as per that Act, but it is clear this would be inappropriate, given there is no longer a pressing time constraint on their use, unlike the then imminent departure from the EU. A better solution would be for the Government to abide by the constitutional convention and bring forward the appropriate primary legislation. That is the only way in which to enable any meaningful parliamentary scrutiny of these important reciprocal arrangements.

I look forward to the Minister’s explanation of why it is necessary to bypass Parliament and breach the constitutional convention in the manner proposed. I understand why it may be convenient, but cannot see why it is necessary or proper. We will certainly return to this issue as the Bill progresses.

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to the noble Lord, Lord Sharkey, for that completely comprehensive overview of the problem with this clause. I simply have some questions relating to it. We have devolved powers in the devolved nations of the United Kingdom and, to my understanding, this clause does not oblige the Government to have undertaken a comprehensive consultation with them before entering into such an agreement. It does not seem to require legislative competence before such legislation is proposed, and that legislation certainly would not come before this Parliament anyway.

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Moved by

[Baroness Finlay of Llandaff]

236: After Clause 140, insert the following new Clause—
“Registration of tertiary prevention activities in respect of provision of social care
In section 9 of the Health and Social Care Act 2008, in subsection (3) at the end insert “or any form of reablement and rehabilitation provided under section 2 of the Care Act 2014 to reduce the need for care and support”.”Member’s explanatory statement
This new Clause would bring reablement and rehabilitation provided under Section 2 of the Care Act 2014 to reduce the need for care and support into the purview of the Care Quality Commission.

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[Baroness Finlay of Llandaff (CB)]

My Lords, this group of amendments is concerned with rehabilitation services. Very briefly, because the hour is very late, I will set out why it matters so much.

People in hospital, as the Minister said previously, lose muscle mass at an alarming rate when they are confined to bed. They risk thrombosis, lose their ability to balance, their confidence and their social contacts, and can become lonelier, isolated from friends and family, and depressed as they see themselves able to do less and less. They then become terrified of going home and often feel quite dumped when they get home because there is a sudden cliff edge from being supported in an environment to feeling like there is no one there. That same cliff edge also happens for patients when they leave intensive care units and go from the very intensive care down to a general ward—so we have huge steps in our system at the moment.

Assessment in hospital, as has often happened, does not often make any sense, because people know their own home. So assessing whether someone can make a cup of tea in a hospital kitchen may bear no relationship at all to their own kettle, their own kitchen, the floor, where they keep things, and so on. They need to be in their own home to be assessed. In their own home, there are often trip hazards, if they are not detected, and if people are not supported to navigate around their own home and furniture, they will have a fall and end up back in hospital very quickly. They need seven-day support at home, because they need to have people whom they can contact.

The problem is that, at the moment, recovery and maintenance of personal independence, although central to the Government’s long-term ambition for social care services, just do not seem to be integrated. In the document, People at the Heart of Care, there is a reference on 68 occasions to the importance of the role of adult care services in maintaining independence for people at home in the community, but there is no mention of local authority rehabilitation services at all.

Rehabilitation services in the community are not subject to regular monitoring and inspection. There are no consequences for poor or absent provision beyond individual complaints, which is why this amendment proposes that they should be brought into the purview of the Care Quality Commission. In the other place, the Minister Edward Argar stated his belief that services were already covered by the existing legislation. But that is not the everyday experience in operation. For example, if we look at vision rehabilitation services, in an audit undertaken by the RNIB, half of the lead counsellors for rehabilitation had no idea that vision rehabilitation was in their remit.

I shall move on rapidly to Amendment 241, because these amendments are all linked. I should have said at the outset that these have been proposed and supported also by the Chartered Society of Physiotherapy, of which I am president. In this amendment, in large part, professions involved in local authority rehabilitation are regulated bodies with recognition in health, such as OTs, physios and speech and language therapists. But there are other people in local authorities involved in providing rehabilitation who are currently completely unregulated and unregistered, so the Rehabilitation Workers Professional Network is currently seeking registration with the Professional Standards Authority in order to take this group of staff on to a list of statutorily regulated social care staff.

Amendment 306, also in this group, would bring local authority reablement and rehabilitation activities, defined by care and support statutory guidance as tertiary prevention, into regulation and enable the Secretary of State to require information on how the service is operated. Anecdotally, there is wide, unwarranted variation in both the quality and breadth of service offered across England. There is no centralised reporting of performance. Bringing these services explicitly into regulation would enable NICE to develop guidelines and quality statements that could be used to inform the quality of provision of services, which, as I have already said, could then be properly inspected. We might then get nearer to having a level playing field.

I also have my name to the amendment of the noble Baroness, Lady Greengross, which is about hospital accommodation, and I will speak to it briefly. At the moment, we have a severe shortage of beds. We know that patients come out of ICU to general wards, and there are patients who cannot then be discharged to home. Often, they are in that twilight where they are really not well enough to go home. They need more rehabilitation, they need more support, but the hospital is deeming them fit to discharge because of the incoming pressure on their beds.

If we had some more step-down beds, we could provide care in much more imaginative ways, such as happens in some parts of Europe, where, for example, family members are expected to come in and help with some of the basic care—feeding, personal hygiene and so on—of their own relative, as they all get used to rehabilitating together, so that that person can go home with that family member understanding how to care for them and what to do, and therefore being able to support them better in the community and pick up early warning signs.

We need to learn from the military rehabilitation units and the new NHS national rehabilitation centre that is being built near Loughborough, because there is evidence that if you can move people through the system more appropriately and get them back home, they recover better and quicker and do not risk that deterioration I referred to at the beginning. A community rehabilitation plan would improve co-ordination, integration of rehabilitation units and community rehabilitation. I beg to move.

[Baroness Walmsley (LD)]

My Lords, numerous reports from Select Committees of your Lordships’ House have recommended that the NHS and care system do things differently in order to use resources efficiently while providing better care and independence for patients. It is well known that most of us cost the NHS more as we get older, particularly if we have multiple morbidities. This is why the Government launched the Ageing Society Grand Challenge—to achieve five additional years of healthy life by 2035. So your Lordships’ Science and Technology Committee looked into this and published a report on 15 January last year. Sadly, we had to conclude that the Government are not on track to achieve this.

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[Baroness Chisholm of Owlpen (Con)]

I thank noble Lords for explaining these amendments. On Amendments 236 and 306, it is right that social care services be appropriately and effectively regulated, and this includes rehabilitation and reablement. However, I do not believe these amendments are necessary to achieve that outcome.

The definition of “social care” in the existing Section 9 of the Health and Social Care Act 2008 is already sufficiently broad to cover reablement and rehabilitation services provided under Section 2 of the Care Act 2014. Most rehabilitation and reablement services are already within the scope of the CQC’s regulated activities, so most of those services are CQC registered.

It follows that these services are also in scope of the provision in Clause 85 that enables the Secretary of State to require information from CQC-registered providers of adult social care services. If there are concerns about the scope of CQC regulatory activities in relation to these particular services, I would encourage the noble Baroness to write to my noble friend the Minister, so that it can be ascertained whether changes to secondary legislation are needed.

On Amendment 241, the scope of Section 60 currently covers healthcare professionals across the UK, and social care workers in England only. Social care is a devolved matter and falls within the competence of the devolved legislatures for Scotland, Wales and Northern Ireland. Section 60 defines

“social care workers in England”

through a list of descriptions. Staff who work to provide reablement and rehabilitation services in the course of care work are covered by the existing descriptors and could therefore be brought into regulation through secondary legislation. In addition to those carrying out this role in the social care field, there are also a number of healthcare professionals who provide reablement and rehabilitation services, such as occupational therapists and physiotherapists, who also fall within the scope of section 60.

Finally, turning to Amendment 289, the Government recognise that rehabilitation is a critical element of the health and care system, supporting patients with a wide range of conditions. A number of initiatives are already under way to support future discharge routes in a way that is sustainable and cost-effective and that provides choice for patients to return to their community. These will be pursued locally by the NHS in ways that best fit their local clinical requirements.

I think it was the noble Baroness, Lady Finlay, who asked why NICE could not give guidance. NICE has already given guidance on rehabilitation after critical illness in adults. It was published in 2009 and reviewed in 2018.

NHS England and NHS Improvement lead a programme to identify optimum bed-to-home models of care for rehabilitation services, supporting discharge to assess policy implementation. The programme will estimate the right capacity for out-of-hospital rehabilitation care, supporting systems through a range of guidance, frameworks and tools. Furthermore, we have already asked NHS organisations to review their estate and identify opportunities to utilise or dispose of surplus assets to ensure that the estate remains efficient and cost-effective.

The NHS also, for transparency, publishes quarterly statistics on surplus land. Integrated care boards will be able to develop estate strategies which identify the efficient use of the estate. As part of that, these plans will be able to identify a number of NHS priorities that could be delivered through the use of surplus land. It should be for local organisations, not the Secretary of State, to decide how to utilise surplus land to meet the needs of their local populations, and therefore we do not think this amendment takes the correct approach in this regard.

I thank noble Lords for their contributions to this debate and hope that I have given them enough assurance at this late hour to allow them not to press their amendments.

[Baroness Finlay of Llandaff (CB)]

I am most grateful to the Minister for that response and I am particularly grateful to all those who contributed to this debate at this late hour. The noble Baroness, Lady Merron, had it completely right when she said that this was about a continuum of care. The problem is that, if people do not get timely care at the outset and on the way through their journey, things just accumulate.

I certainly will go back and look at the NICE guidance; I had understood that it did not go far enough or cover things effectively, but I am most grateful to the Minister for drawing my attention to that. Certainly we should be looking at how the regulation of those involved in rehabilitation in the community can be extended. Of course, the advantage of regulation is that you also have a lever for training and education, to address the very specific needs of different groups. My noble friend Lady Grey-Thompson spoke of the disabled group, which includes those with physical disabilities, learning difficulties and different areas of handicap. They need to be looked after by people who have been trained and who understand what their specific needs are. That cannot be just a generic service.

I am also glad to hear that there will be the ability to look at the beds and the estate overall and that people are beginning to think about that again. With all those assurances, I beg leave to withdraw the amendment.

Amendment 236 withdrawn.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 1 & Committee stage
Wednesday 26th January 2022 Lords Chamber

[Baroness Greengross (CB)]

My Lords, I will speak to Amendments 133, 139 and 161 in my name, and to Amendments 143 and 144 in the name of the noble Baroness, Lady Finlay, to which I have added my name.

Amendments 133, 139 and 161 are intended to clarify the role that continuing healthcare—CHC—will play, along with other commissioned services. The Continuing Healthcare Alliance has raised concerns about the provision of NHS continuing healthcare. The package of care is there to support people with ongoing and substantial needs in England. Examples of conditions for which someone may qualify for CHC include Parkinson’s, motor neurone disease and dementia, but there are many others as well.

Amendments 143 and 144 would strengthen the power of NHS England to give directions to integrated care boards. They would help to ensure national consistency of CHC services, which, sadly, is not always the case at present. When the Bill was debated in the other place, the Minister, Edward Argar, responded to a similar amendment as follows:

“It is right that clinical commissioning groups, as they are currently called, are held accountable for NHS continuing healthcare within their local health and social care economy. That will also be the case with the national move to integrated care boards, where the board will discharge those duties and be accountable for NHS continuing healthcare as part of its NHS commissioning responsibilities.”—[Official Report, Commons, Health and Care Bill Committee, 28/10/21; col. 825.]


Given this earlier response, I believe that it is the intention of the Government to improve the national delivery of continuing healthcare and to ensure more consistent delivery throughout England. The intention of this group of amendments is to clarify that in the Bill, so I commend Amendments 133, 139 and 161.

[Baroness Finlay of Llandaff (CB)]

My Lords, I added my name to Amendments 133, 139 and 161, which were so ably introduced by the noble Baroness, Lady Greengross, and others. I also have Amendments 143 and 144 in my name. All the amendments aim to tackle the accountability gap: the inconsistency of provision of continuing healthcare across different parts of England.

The noble Baroness, Lady Greengross, alluded to some diseases, but this goes much wider. There are people with spinal injuries and long-term multiple sclerosis and there are people who have had strokes. They all need ongoing long-term healthcare at a high level—way above the level that can be provided by social care.

The problem is that the accountability gap exists and there is inconsistency in the quality of provision, with eligibility criteria being interpreted differently in different areas. Amendments 143 and 144 aim to strengthen the powers of NHS England in the Bill to give direction to integrated care boards, with the particular aim of closing this accountability gap. Within the existing system, NHS England is responsible for holding clinical commissioning groups accountable for their discharge of continuing healthcare and functions.

In the reformed system proposed by the Bill, NHS England will hold these boards accountable in a similar way, but I question whether it has adequate authority both in the current system and the proposed system and whether the levers available to it to act meaningfully are adequate. While the intention prior to the Lansley reforms was to give NHS England powers to intervene to create meaningful change in practice, the powers were restricted to high-level interventions where there was a failure of governance at the highest level, rather than interventions where a CCG was failing to implement good practice or to adhere to national policy.

The 2018 report by the Public Accounts Committee in the other place supported these concerns and stated:

“NHS England is not adequately carrying out its responsibility to ensure CCGs are complying with the legal requirement to provide continuing healthcare to those that are eligible.”


There are limited accountability mechanisms and there is inadequate data collection at present. These amendments seek clarification and would drive long-overdue improvements in the quality and, importantly, the consistency of the way that continuing healthcare decisions are made and the process is administered, with the aim of improving outcomes and reducing the strain of applying for continuing healthcare for people who live with complex health needs and for their loved ones, in particular their family and carers.

[Baroness Pitkeathley (Lab)]

My Lords, I very much support the noble Baroness, Lady Greengross, in her amendments. We should be clear that continuing health needs are ignored by assessors because of the issue of who will pay. I have experienced this twice with neighbours and friends. It was clear to me that both patients had complex needs, mentioned by the noble Baroness, Lady Finlay, and had undeniable continuing care needs, so I was puzzled as to why the families were working out how to fund places for their relatives. They had never been told of the possibility of continuing NHS funding. I suggested that they quote the legislation back to the assessors and of course when they did so they found that funding would be provided—and some years later it is still being provided. Without this chance encounter with me, and asking the right questions, those families would have been denied the funding that is their right.

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[Lord Clement-Jones (LD)]

My Lords, I support the amendment in the name of the noble Lord, Lord Hunt, to which I have added my name. He is not the only one to be concerned about this part of the Bill. My noble friends Lady Brinton and Lady Harris have delivered powerful support and a demonstration of why we have to be absolutely vigilant about access to, and sharing of, personal data, as they were so successfully on the police Bill. We must not repeat those experiences.

We will talk further and more comprehensively about data later in Committee. In the meantime, Amendment 145, as the noble Lord, Lord Hunt, explained, tries to illicit from Government their intention behind these disclosure powers for ICBs in new Section 14Z61 in Clause 20 with regard to information, whether personal data is involved and what the safeguards are. New Section 14Z61 sets out the provisions whereby

“An integrated care board may disclose information obtained by it”


in the exercise of its power. As the noble Lord, Lord Hunt, said, the catch-all condition in new Section 14Z61(1)(f) under which disclosure can be made

“for the purposes of facilitating the exercise of any of the integrated board’s functions”

seems remarkably open-ended. My noble friends have also pointed out the sheer width of paragraphs (e), (g) and (h), which go even further than those originally proposed in the police Bill and raise crucial questions for the Minister to answer.

Amendment 145 aims to ensure that an ICB cannot disclose information where this is patients’ personal data. In my last intervention on the group headed by Amendment 26, I, like the noble Lord, Lord Hunt, expressed my support for the NHS’s digital transformation programme. It is clear, as the noble Lord says, that there is great potential growth in new technologies using data such as AI and machine learning. However, there is an absolute imperative to have the right safeguards in place in relation to duties and data. This is very much aligned with transparency in public information and engagement, particularly in this context. Transparency, choice and consent are crucial, as the noble Lord, Lord Hunt, says.

We have all looked forward to the Goldacre review, but I am not convinced that it will range wide enough and cover the governance arrangements needed to preserve and enhance public trust in the sharing and use of health data, but we will see. I look forward to the debate towards the end of Committee when we discuss the wider aspects of the Bill, when we will produce further illustrations of the rather cavalier way in which the Government, the department and the NHS have treated personal data. Not least of these is what has been called the attempted GP data grab of last year. In the meantime, I hope the Minister will be able to give assurances that the powers in Section 14Z61 will be very limited.

[Baroness Finlay of Llandaff (CB)]

My Lords, from the perspective of a clinician, I support this amendment very strongly. If it is not adopted, I can see it being imperative, in any doctor’s consultation, to warn the patient that their data could be accessible and to be very careful about what is recorded in the clinical record. Very often, patients come to see a doctor, possibly at a very early stage of slightly disordered thinking or because they have undertaken a potentially high-risk activity, often in the sexual domain, and are worried that they may have contracted some condition or other. If you inhibit that ability to see a doctor early, you will further drive people into whatever condition is beginning to emerge, so it will not be known about until later. That applies particularly in mental health, where early intervention might prevent a condition from escalating.

I can see that, without an amendment such as the one proposed by the noble Lord, Lord Hunt of Kings Heath, every clinical consultation will have to be conducted with extreme caution, because of potential access to data.

[Lord Bethell (Con)]

My Lords, I an enormously grateful for this debate, because this clause and related clauses are critical both to achieving the digital transformation aims of the NHS, referred to by the noble Lord, Lord Clement-Jones, and to getting the healthcare system to work better together.

I am also grateful for the humanity and testimony of several noble Lords, exemplified by the noble Baroness, Lady Finlay, who spoke movingly about the practicalities of patients going to see their doctors. I know from my own life and from my family how important it is to protect those relationships.

That is why I would like to hear a little from the Minister about what protections there are, because health data is and should be treated as a special category of data. What additional protections are there in the use of health data, including in the common law duty of confidentiality, the role of the National Data Guardian, the way the Caldicott principles will be used and the national data opt-out? What reassurances do we have that those special considerations will apply to this clause and its related components?

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 3 & Committee stage
Wednesday 26th January 2022 Lords Chamber

[Baroness Wheatcroft (CB)]

Yes, Lord Mackay. Your Lordships can see how nervous it makes me feel! I think that, in this particular situation, private Members’ Bills have failed, and the Government show absolutely no intention of moving on something that is so crucial to so many people. Although you have to be wary of opinion polls, it seems perfectly clear that opinion in this country has moved and that a majority of people would like not to have assisted dying made mandatory but to have the choice at the end of life of how they say farewell.

Like others, my inbox has been inundated, and I have tried to reply to one or two of those who have been opposed to the proposal from the noble Lord, Lord Forsyth. One doctor, Dr Whitehouse, a palliative care doctor, wrote to tell me that nobody had come to him whom he could not help, and it was very important that everybody should treasure their short remaining time, and palliative care would do that and assisted dying should be resisted. I wrote back to him a week ago through email—he gave me his email address—and said that I wanted to know more. I am a firm believer in palliative care; it works wonders, and it has improved hugely over the years, but I do not believe that it works in every case. I asked him whether it worked, for instance, with motor neurone disease, or whether it could cope with the incontinence which makes the end of life such a discomfort and an indignity for so many people—or did the help that could be provided mean only understanding and care, which does not necessarily deal with the indignity at all? Noble Lords will not be surprised to learn that I have not heard back from Dr Whitehouse, and neither do I expect to.

This matter polarises people, but the amendment is asking merely that Parliament should have the chance to debate a matter that is crucial to parliamentary Members and, more importantly, the constituents who vote for them. I support both amendments.

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare all my interests in palliative care and as a director of Living Well Dying Well and vice-president of Marie Curie and of Hospice UK. I have two amendments in this group. I do not intend to lay out all the arguments against the amendment proposed by the noble Lord, Lord Forsyth. Indeed, the noble Lord was right that we had only three-minute speeches when we debated the Bill proposed by the noble Baroness, Lady Meacher. However, I remind the Committee that the Bill put forward in the other place by Rob Marris MP actually failed—it was voted out—and it was one that came high in the ballot, so if it had been voted in it would have progressed quite well.

Personally, I do not think this is the place for us to debate assisted dying, which would need a change in the criminal law. The procedural issues have been clearly explained by the noble and learned Lord, Lord Mackay of Clashfern. The noble Lord, Lord Forsyth, spoke about the right to die. I remind him that everybody is going to die—it is an inalienable right. What he is talking about is licensing some people to provide lethal drugs to others, against a set of criteria. I remind him that three-quarters of people in my branch of the profession—specialist palliative medicine—who look after these patients all the time, not only do not want the law to change but do not want anything to do with it in the event it changes.

The claim has been made that palliative care is not a panacea. Assisted dying is not a universal panacea either. There is a 6.9% complication rate in Oregon, which is experimenting with the fourth drug cocktail in seven years. I remind the Committee, because I have made a plea for specialist palliative care, that it is estimated that 118,000 patients each year in the UK cannot access specialist palliative care. That is why I have an amendment tabled to the Bill, which I hope the Government will look favourably on. Areas where assisted dying has happened rank low on end-of-life care compared to the UK. Areas with assisted dying have dropped in the rankings for palliative care since 2015 compared to areas which did not change the law.

Amendment 203 is well intentioned and builds on all the moves for advanced care planning that are spearheaded by specialist palliative care. I know it was drafted originally with Marie Curie’s help, because it initially discussed with me whether I would table it, but I did not and did not sign it for two reasons. First, it is imperative that such conversations begin early, are part of ongoing care and do not become a tick-box exercise which says, “Conversation offered—tick”. That risks all the dangers of what happened with the Liverpool care pathway. Sadly, I have seen all too often a patient being told, “But that’s what you said you wanted”, when their needs have changed. Much research on advanced care planning has been done by my colleagues in my team in Wales. This has now informed some of the moves that are happening. Having open conversations is something that patients want, and the clinicians trained in communication skills want to provide those openings and do.

The second reason that I was concerned about this is that excellent draft guidance on advanced care planning has been developed by NHS England and NHS Improvement, and is near to being published; I had the privilege of being consulted on the final draft. It sets out core principles that such planning must always be a voluntary process and that every effort must be made to help someone express their views and preferences. The person is central to developing and agreeing their advanced care plan with agreed outcomes that are shared in partnership with relevant professionals. They have a record of the shareable plan and are encouraged to review and revise it so that they can change their mind at any time. In addition, anyone involved can speak up if they feel that the principles are not being followed.

The very sensitive approach set out in the guidance recognises that people have different levels of preparedness for such conversations; that their perception of their illness evolves over time; and that, in the crisis of being given a diagnosis or told of disease recurrence, the views that a person expresses may subsequently change as they reframe their experience. The first step is to start with an exploration of how much the person wants to be involved, what matters to them, and the pace and language that matches the person, as well as that they are listened to and understood.

The amendment asks for a “relevant authority” to

“have regard to the needs and preferences recorded … in making decisions about the procurement of services.”

I hope that the Government can see that, by providing specialist palliative care as a core service, the type of bureaucratic delays that would be involved in procuring services would be completely replaced by a rapidly responsive specialist service that can address the person’s needs in all domains. The amendment also uses the term “relevant person”. If it were used as in the Mental Capacity (Amendment) Act, that person could turn out to be the care home manager, who may actually have competing interests and therefore is inappropriate.

A comprehensive survey of over 2,000 people by Cardiff University’s Marie Curie research department reported that people listed their top priorities towards the end of life as timely access to care at 84%, and being surrounded by loved ones at 62%. Being home was a priority for only 24%.

This is a well-intentioned amendment but it has now been replaced by the extensive consideration of the consultation and production of comprehensive guidance.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 1 & Committee stage
Monday 24th January 2022 Lords Chamber

This is a very curious group. I shall just mention the two amendments to which I have put my name—though I think the noble Lord, Lord Rennard, has said it all—and refer to the importance of self-management. The evidence in favour of self-management is overwhelming. I refer the House to the data analytics team at the Health Foundation, who have begun to fill some of the evidence gap in relation to this. They have shown that the patients most able to manage their health conditions have 38% fewer emergency admissions and 32% fewer A&E attendances than those least able to manage their conditions; they also have 18% fewer GP appointments. This is the first study in the NHS to have demonstrated an association between a patient’s ability to self-manage and the use of services across primary and secondary care. That is an important start to an evidence base. The Minister has not been sympathetic to many amendments; it has been warm words but little action so far. I hope that, on our fifth day in Committee, on these two amendments put forward by the noble Lord, Lord Rennard, the Minister might just say that he will accept them.

[Baroness Finlay of Llandaff (CB)]

My Lords, this has been a very interesting short debate. I have two issues to raise. I am grateful to the noble Lord, Lord Hunt, for having raised perverse incentives and, indeed, the danger with perverse incentives that senior consultants with a great deal of experience could be absent from NHS premises when undertaking work such as surgery in other premises; they would therefore not be available to their NHS patients in the event of a problem and some surgery being left to more junior members of staff.

The other issue is the difficulty of ensuring true consent and information for patients when they are offered choice, with respect to their awareness of the staffing levels in the premises to which they will be going. In some of the private providers, there is not very comprehensive out-of-hours medical cover—particularly at night—with somebody on site. There is also a problem that, if a patient should develop a complication, foreseen or even unforeseen, and is in need of an intervention, they may then need to be transferred to a local NHS intensive care unit. In that event, it would be important for the money to follow the patient. If that intensive care unit is out of the area from which the patient has come, I hope that the regulations will allow for appropriate funding of that NHS facility.

[Lord Warner (CB)]

Is the noble Baroness aware that, during the arrangements in which there were contracts with the independent sector to provide elective surgery in independent treatment centres, the quality of that care was both reviewed by the then Chief Medical Officer, Liam Donaldson, and looked at, with evidence taken, by the Health Select Committee? They found that claims about shortcomings in these private facilities were exaggerated—their provision of services was equally as good as that of the NHS facilities.

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[Baroness Barker (LD)]

Following on from that, one point that we should take into account is the extent to which the private sector and the NHS rely on the same workforce. That is particularly the case in relation to consultants and less so for nurses.

While we can argue about the location, price or quality, perhaps, of treatment and aftercare, the key issue is diagnostics, which is a huge issue at the moment in the NHS. I have a slightly different take on that. For all of my life, my mum was deaf, and I have to say that the quality of NHS hearing aids was about 10 years behind the private sector’s—but people trusted them; they trusted the quality of the diagnostics and the advice that they were given. We have moved a long way in terms of diagnostics for eyecare and hearing aids, but it does not matter where that happens; what the general public want to do is to be able to trust the quality and independence of the diagnostics that they get. If we can do that, I rather suspect that the general public, in the wake of the pandemic, when they see the NHS struggling in all sorts of ways to make up for two years in which their staff have been pulled around, sometimes away from their specialties, would be quite forgiving—as long as there are some very basic agreements about how it will work and the integrity of the work and systems.

[Baroness Finlay of Llandaff (CB)]

I am most grateful to the noble Baroness, Lady Barker, for adding some clarification to the point that I was trying to make. I am not for or against any system; all I am saying is that the arrangements have to be in place so that nobody is jeopardised—and indeed, in the event of a patient being transferred from a private facility back into the NHS, that part of the NHS is appropriately recompensed, particularly if the patient comes from a long way away.

[Baroness Walmsley (LD)]

My Lords, the problem to which the noble Lord, Lord Warner, is suggesting a possible solution is the result of long-term underplanning and underfunding of staffing in the NHS, and underfunding also of the capital budgets of hospitals, which sometimes have to choose between mending the roof and buying a piece of equipment that would get patients through the system more effectively and efficiently.

On the comments from my noble friend Lord Rennard on self-management, it is of course not just better care that that produces—it is also very cost effective. I draw noble Lords’ attention to page 3 of the Bill, line 13, where one of the three things to which NHS England has to pay regard about the wider effects of its decisions is

“efficiency and sustainability in relation to the use of resources”.

The resources are much better and more efficiently used if the patient has a decent choice of the equipment and treatment that is most effective for them, and it is often a great deal cheaper.

I also agree with the noble Lord, Lord Lansley, that we need the guidance. We need to see it before Report, and I hope that the Minister will be able to provide that.

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[Lord Kakkar (CB)]

My Lords, I support Amendment 173 in the name of the noble Baroness, Lady Merron, to which I have added my name, and I broadly support the amendments in this group.

Many noble Lords have identified the question of workforce as the most important single issue that the Bill has to address. Without effective workforce planning, the NHS, as we have heard—and, indeed, the care system—is in peril. Previously, our country and the National Health Service have depended on overseas doctors and nurses to come and fill large numbers. That has been the principal basis of workforce planning for many years—indeed, decades. But that is no longer a viable option. The World Health Organization has estimated that, globally, there will be a shortage of some 18 million healthcare professionals by 2030. That will be a particularly difficult challenge across the globe, and it means that we can no longer depend on importing healthcare professionals to meet our ever-increasing needs. This is well recognised by all who are responsible for the delivery of healthcare and, indeed, by Her Majesty’s Government.

The question is: how can we dependably plan for the future? Unfortunately, it has to be accepted—indeed, it has been accepted in this debate—that planning to date has failed miserably. That is not a malicious failure, but it is a reality, and one that we can no longer tolerate. That is why amendments in this group that deal with the requirement for independent planning and reporting on a regular basis to provide the basis for determination and projecting future health and care workforce needs, are appropriate—indeed, essential.

My noble friend Lord Warner raised a separate issue about a group of amendments that will come later in the Committee’s consideration, which propose the establishment of an independent office for health and care sustainability. This is a recommendation of your Lordships’ ad hoc Committee on the Long-term Sustainability of the NHS and adult social care, chaired by my noble friend Lord Patel. It is this emphasis on ensuring that there is independent, long-term planning and projection that can provide the fundamental and accurate foundations for workforce planning. We need a broader assessment of what the demand for healthcare will be, and that demand is complex and driven by not only demographic change but changes in the way that we practise, changes in expectations, adoption of technology and changes in working practices. That all needs to be brought together to provide the foundations for planning. Without this emphasis and this obligation secured in the Bill, the NHS and adult social care in our country will not be sustainable.

I very much urge the Minister, in considering this group of amendments, to help your Lordships understand why it would be wrong to secure this emphasis in the Bill. If Her Majesty’s Government are unable to secure this emphasis in the Bill, how can they reassure noble Lords that the failures in planning that have dogged NHS performance with regard to workforce over so many years will not be repeated in the future?

[Baroness Finlay of Llandaff (CB)]

My Lords, to state the obvious, without a workforce plan we cannot have a workforce. Amendment 170 certainly seems to get to the heart of the issue, which was so well introduced by the noble Baroness, Lady Cumberlege, and my noble friend Lord Stevens.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Committee stage
Thursday 20th January 2022 Lords Chamber

If we could forecast the next NHS restructuring Bill in a year of two, do we think much will have changed? I am afraid that it will not have, and this is why legislating is about the only way we can go forward, and why I support the noble Lord, Lord Black.

[Baroness Finlay of Llandaff (CB)]

My Lords, this has been a really interesting debate and it made me think of Aneurin Bevan’s original vision, which incorporated the concept of dealing with the problem and then secondary prevention in rehabilitation and concepts of convalescence. After this debate, I am tempted to go back and read again In Place of Fear, because it is a very short book but it is worth reading.

There seems to be a theme coming through here really strongly. If we do not integrate these services and pull them together, we will never get not only the primary prevention but the secondary prevention which, as the noble Lord, Lord Black, highlighted, is so important. You do not just fix the problem; you prevent the next set of problems coming along.

I was slightly alarmed to note that in 2018 alone, there were over 6,000 deaths attributed to falls. A lot of those were on stairs. They were just simple trips on steps, yet they resulted in deaths. It took me back to when I worked at the Westminster Hospital, which, of course, is no longer across the road. Somebody tripped on the steps of the Tate and subsequently died from a head injury after hitting the concrete. One sees that at stations and so on, too, and we now see it with these scooters, where people scoot into trees and lampposts.

Anyway, to return to the subject of the amendments, the reason for my Amendment 100 is precisely to promote that rehabilitation and remind everybody that rehabilitation is not just a medical and nursing issue. It involves many different professionals, and volunteers quite often, at different levels. A rehabilitation plan at the ICS level could provide the co-ordination required, across different settings and services, to properly support early discharge from hospital, provide access to multidisciplinary teams and incorporate the psychological support that is needed. At the moment, things are organised in condition-specific medical silos, and we have already heard about the fragmentation of provision.

We need to respond more effectively to the needs of people with long-term conditions. When we come to measure outcomes, it is much easier to immediately measure the outcomes of an intervention. The outcomes from long-term secondary prevention are much more difficult to measure and quantify, particularly in a population that has multiple pathologies. So there has been poor data collection in part because it has been very difficult.

A simple example is that NICE guidelines suggested that over 1 million people with COPD every year should be referred for pulmonary rehabilitation, but only 15% are referred. We need to understand why. These are people who are breathless. They are getting chest infections and becoming oxygen dependent—so the consumption of NHS resources goes up. After a stroke, people have very marked rehabilitation needs in many different areas. That may be physiotherapy, occupational therapy, speech and language therapy and so on, going much more widely.

We also have a problem with our housing, because many people are not in accommodation that is suitable for them to go to when they are discharged from hospital. It has been estimated that there are 10,000 people in hospital at the moment who do not have a suitable home to go back to—hence the problem of where they go after hospital. So it is not only about providing a social care workforce to go in. We have already debated last week the problem of housing.

I do want to speak specifically to Amendment 51A in my name and the name of the noble Baroness, Lady Jolly. That is about having responsibility for every person present in an area. If we take the south-west, which is dependent on tourism, it goes from relatively low populations to absolutely bursting at the seams with holidaymakers. We have all seen it. These areas have an additional problem: when people are on holiday, their guard is down, they are less vigilant about what they do and they are less risk averse. Going back to falls, they are much more likely to have a fall or an accident. People fall off cliffs, fall down surfaces and so on. All of a sudden, in the tourist season, these people are at higher risk of something going wrong. They often go away and forget to take their medication, or they take something that interferes with it and end up with different side-effects and so on. They put a huge pressure on the emergency services in the area, so I am quite concerned at the way the funding might flow, in the way this Bill is written. We could inadvertently find that some areas are incredibly pushed at certain times of the year because of the way the population moves. I hope that will be taken into consideration.

[Baroness Whitaker (Lab)]

My Lords, following the impressive, high-calibre tour d’horizon from the noble Baroness, Lady Finlay of Llandaff, I rise to support the importance of proper and full rehabilitation as in Amendment 100, again supported by the Royal College of Speech and Language Therapists. Perhaps I should have declared, at my last intervention in Committee, that I speak as a vice chair of the All-Party Parliamentary Group on Speech and Language Difficulties—I apologise.

Very briefly, an annual plan, as in Amendment 100, would ensure that rehabilitation is explicitly integrated. Rehabilitation spans many disciplines, as the noble Baroness, Lady Finlay, said. It is what enables those who have degenerative diseases, strokes, cancer, autism and learning difficulties, to name only a few, to communicate—how essential is that for even minimal well-being?—as well as helping people to, for instance, swallow without choking and stay alive. As ever, it is the vulnerable who suffer when these structural underpinnings to ensure joined-up, consistent care are not there. I hope the Government will adopt these amendments.

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To do anything less than accept these amendments is to demean the work and statutory role of NICE and its experts, to frustrate consultants trying to do their best under those guidelines for their patients, and to deny patients their fundamental right to access to treatment as approved by NICE. I look forward to hearing the Minister’s response and hope that it will be helpful.

[Baroness Finlay of Llandaff (CB)]

My noble friend Lord Patel has had to leave because of pre-booked travel, but he has given me the honour—and it is an honour—of having his brief speaking notes, from which I would like to start, and then move on.

Before I get on to that, I think it is important for us to remember that NICE was set up to establish the evidence base behind what we do. Before NICE was established—and I have worked with Deirdre Hine, who was very involved in setting it up when she was Chief Medical Officer for Wales—people were doing things because they had always done them and because they liked doing them that way, with no evidence base, and often they were doing things that made situations worse, not better.

As Lord Patel wanted to stress, clinicians have a strong belief now in evidence-based healthcare, and guidelines are critical to ensure high and consistent levels of evidence-based clinical practice across the NHS. The guidelines developed by NICE can be adapted to the local situation, and they are also under review. I should declare that I have served for three years as vice-chair of the group looking at ME/CFS guidelines, and it was very instructive to see the depth to which everything was explored and the rigour of the processes; to the point that, when we were asked to review again some papers, we went back to the beginning and reviewed them all over again. Interestingly, in doing that, we slightly downgraded their scoring, rather than upgrading it, which is what had been expected. I was really impressed at the rigour of the process, including the health economics impact.

That experience has been behind the push to make sure that there is compliance. My proposed amendment would be a way of assessing compliance with the guidelines as predetermined and set out in the NHS mandate. The mandate could select a few that would act as proxy markers across the piece and include a date line, so that their implementation across the country could be benchmarked. It would not increase the workload, because it could draw on existing sources of data in the NHS. As the Minister has said, data is our key to understanding and unlocking things.

The noble Baroness, Lady McIntosh, in her comprehensive introduction to this group of amendments, spoke about type 1 diabetes and highlighted that, in some areas, the adoption of continuous glucose monitoring is as low as 0%, whereas in other areas it is up to 20%. There are a couple of other emerging areas; one is in atrial fibrillation, where direct oral anticoagulants have made warfarin a drug of the past. Yet the variation between clinical commissioning groups’ adoption of the guidance is quite horrifying. There is a threefold variation in prescribing, so there are areas of the country where a lot of patients are being denied an intervention that has been shown to be beneficial compared to what was done before.

We have already alluded to another emerging area: the new biologics. On the face of it, they are very expensive, but they are often remarkably effective—they can revolutionise the management of some diseases. We have a budgetary problem here, because the NHS budgets are year-on-year, and the face-value cost of the new biologics is very high; but if you look at the whole lifetime cost of healthcare interventions then they come out much lower. Take the example alluded to, of Crohn’s disease, and consider the cost of someone having their bowel removed, who might then end up on total parenteral nutrition; it is not only the cost of that nutrition but the costs in all other domains in their life, and the lives of their family. In comparison, the new biologics can rapidly get this disease’s process under control and revolutionise things.

The proposal is to give the CQC the powers routinely to address the adherence to guidelines—that would be specified by the NHS mandate, so a national standard could be set—and introduce a reporting metric using current data sources as a starting point to establish a benchmark. I want to stress, as I know does my noble friend Lord Patel, that we are not advocating for guidelines to be mandatory—that would not be right, because each patient is different and individual—but we are asking for a system to be introduced that gives powers so that there can be scrutiny of whether the guidelines are being adopted, because their adoption would narrow the gap in inequalities. We both feel that we need to commit to address this in this important legislation, because it is a way of achieving tangible action to ensure equity in access to quality in healthcare.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I have added my name to the three amendments that the noble Baroness, Lady McIntosh of Pickering, has referred to. I was the first Minister for NICE, going back to 1999. At that time, we were confronted with a paradox which continues to this day, which is that, although the NHS is full of innovation and we have an incredibly strong life sciences sector and industry, the NHS is also very slow to adopt those innovations. NICE was developed to speed up the introduction of effective new medicines and devices. Right from the start, we had a problem with the NHS being reluctant to implement its recommendations and, within a few months of it starting, a regulation had to be put through which required it to implement them within 90 days. That has been slightly modified since, but none the less, it is still in being. The NHS has become very adept at finding ways to get round this through the various blocks that have been put in at CCG level—the noble Baroness, Lady Brinton, explained clearly the kind of blocks, devices and bureaucratic machinations that are put into place.

The result is that we continue to be very slow to introduce proven new technologies and medicines. NHS patients are very disadvantaged compared to patients in most countries. It then impacts on pharma and the devices industry—I think that pharma is more reluctant now to introduce medicines and develop R&D in this country as a result.

The Minister knows that there is an agreement—it is called VPAS at the moment—whereby NHS expenditure on drugs is capped and industry pays rebates if the cost goes over that cap. Given what I have always thought to be an imaginative agreement and given that industry is essentially underwriting some of those additional costs, surely there must be a better way to approach this which would allow the NHS to implement NICE recommendations enthusiastically, rather than essentially putting into place blocks.

I doubt that we are going to spend two and a half hours on this group of amendments, but these are just as important as the last group, because they go to the heart of whether NHS patients get access to the drugs, devices and technologies that they should. At the moment, they do not. I hope that the Minister might be prepared to take the amendment away. Legislation is the only way that we can see of leveraging the kind of change we need.

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[Lord Lansley (Con)]

Given NICE’s remit, it might be the Welsh Government as well, but the noble Lord may well be correct. We are all surmising, but I think we are probably not too far off the mark. It gave us an opportunity to respond to that.

So far as the amendments are concerned, the proposition that approved treatments should be adopted by the NHS is a proper one. What, of course, has not been brought into the debate is that the world has moved on, even in recent years. NHS England has taken what I think is an appropriately substantial interest in the approval of treatments, the uptake of treatments and their adoption by the NHS. When it started out, people said, “Oh dear, NICE is going to approve a treatment and then NHS England is going to tell people not to use it because it is going to cost them a lot of money.” In fact, we all agreed in the debates on the Medicines and Medical Devices Bill that there was everything to be said for NHS England, NICE and the pharmaceutical industry working together early, proactively, for the planned introduction of new medicines, including taking account of their cost. That is an NHS England role, not a NICE role. NICE does gold standard appraisals, but it does not take responsibility for the fiscal consequences of those appraisals, so all these things need to be put together. The pricing decision should not be something that comes out at the end.

One of the things I have been going on about for a decade or more—actually, 15 years—is that we should not end up in a position where there is an effective medicine that is properly approved by the MHRA and authorised for use; clinicians can use it and they know it is the right thing for their patient; but, because of the absence of an appropriate pricing decision, the answer to the patient is “no”. We should not arrive at that position. With NHS England and NICE working together with the pharmaceutical industry, we stand a better chance of the answer not being “no” in those circumstances as long as the resources are, indeed, available.

I do not think, on the face of it, that we should be legislating to change the medicines mandate from where it is now. My noble friend Lady McIntosh, in introducing her Amendment 54, referred to devices. The amendment does not refer to devices, but it should refer to devices. My further question to my noble friend the Minister is: when are we going to get a proper funding mandate on devices, which I think I was promised during our deliberations on the Medicines and Medical Devices Bill but we have not yet formally had it? Some good work has been done on some devices each year, but I am hoping that we will get a proper funding mandate on devices.

On formularies, my noble friend did not actually refer to the British National Formulary. Of course, NICE has had responsibility for the BNF for about seven or eight years, and even if it is not a legislative method, there is everything to be said for the NHS and clinicians looking to the BNF and NICE’s role in the BNF.

My noble friend and the noble Baroness, Lady Finlay of Llandaff, were quite right about the adoption of NICE guidance and standards on the use of them in clinical circumstances. However, via the regulator—the CQC—we already have a process by which the CQC looks at quality standards produced by NICE and incorporates what NICE itself isolates as the essential aspects of the standards that, in order to provide safe and effective care, must be reflected in the practice of a health provider.

My question to the noble Baroness, Lady Finlay of Llandaff, is: if she thinks that is not sufficient, how much further should the CQC actually go in adopting quality standards? At the moment, it has compromised and said, “We will take the essential steps, because those are a few, generally about five, specific things that we can look at to see whether they are being done, in which case, okay; or are they not being done, in which case it clearly needs improvement, or may not be meeting the standard.”

[Baroness Finlay of Llandaff (CB)]

The noble Lord asked me a question to which I feel obliged to try to respond, but I really want to answer the question with a question: does the CQC have enough powers to benchmark as it would want to do, and to publish those benchmarks? I hear the concerns of my noble friend Lord Stevens in relation to fear of litigation and how that is an objection to the amendments, but I am also quite worried that that is potentially a way of avoiding adopting the guidelines themselves, thereby inhibiting a change in practice and a move to best practice.

While there are sources of information that those who are very health-literate, IT-literate, and so on, can access to establish their own benchmarks about what is happening, many people, particularly those in the most deprived areas of the UK, do not have any knowledge of even where to begin looking for these things. That was the motivation behind the amendment: to try to make sure that in the poorest and most deprived areas, people would still be able to access this. That would drive up standards gently but would not create a mandated requirement that a NICE guideline is adopted, for the reasons I outlined previously.

[Lord Lansley (Con)]

I can see that my noble friend is eager to come in but I will conclude by answering the noble Baroness. I am not an expert, but I think the CQC has the powers—since it presently does it—to take account of the NICE quality standards and to incorporate specific indicators from those quality standards as part of its regulatory review. If the CQC was to attempt to introduce large-scale application of the guidance as a question in a regulatory review, I do not think the issue would be whether it had the power to do it, but whether it would make the headline conclusions it reaches in relation to healthcare providers increasingly difficult to interpret. At the moment, they are relatively straightforward to interpret. There is a small number of specific indicators in relation to services provided and they are either doing them or they are not. With guidance, it becomes much more complicated and many more value judgments have to be applied about the circumstances in which they are or are not complying. So, there is a real difficulty in going far beyond where we are now.

I will listen with great care when my noble friend the Minister responds to the questions I have asked.

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[The Deputy Chairman of Committees (Baroness Garden of Frognal) (LD)]

I call the noble Lord, Lord Low of Dalston, to move Amendment 56A—or the noble Baroness, Lady Hollins. Is the noble Baroness, Lady Finlay, moving Amendment 56A?

[Baroness Finlay of Llandaff (CB)]

My Lords, perhaps I might put in a slight plea to the Committee on behalf of the noble Lord, Lord Low. He has sat patiently through this debate for a long time. He was expecting that the other amendment would be moved and, on realising that it was not, has made every attempt to return to his place as fast as possible.

Amendment 56A

Moved by

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[Lord Crisp (CB)]

My Lords, I congratulate the noble Lord, Lord Howarth, on introducing this very important group of amendments and other noble Lords who have made some very interesting points, such that made by the noble Baroness, Lady Morris of Yardley: this is becoming received wisdom, whereas it might have been regarded as eccentric even five or 10 years ago.

I have three points to make. First, this is a Bill about integration and partnership. It would be good to have a clear message that non-clinical groups such as the ones we are talking about are part of that, in whatever is the appropriate way—a duty or obligation or something of that sort on in the Bill—without being too specific about the detail.

Secondly, the noble Lord, Lord Howarth, made the point that this is the rediscovery of ancient wisdom, not least, as the noble Baroness, Lady Barker, pointed out, through Covid. I am talking about human flourishing going back to Aristotle and many others in the past: the merging of that ancient wisdom with very modern evidence—more evidence all the time about things such as relationships, as well as the arts and everything else that has an impact on our health.

My third point is about impact. I co-chair the All-Party Parliamentary Group for Prescribed Drug Dependence. Last year, 17% of the adult population were prescribed antidepressants. That is a huge amount: when I see such a figure, I always have to remind myself that that means that 83% of us were not. However, 17% is a huge number, and the sort of things that we are talking about can reduce that number to the benefit of the people who would otherwise be prescribed antidepressants, making enormous economic savings, time savings and so on.

[Baroness Finlay of Llandaff (CB)]

My Lords, I strongly support this group of amendments. I would like to make sure that we realise that the medical humanities as a discipline have now been introduced in many medical schools. In my own, I was rather glad that AJ Cronin’s book The Citadel was introduced in general practice, particularly because, of course, he invented Dr Finlay, but there we are.

Quite seriously, we must not forget that loneliness kills. Loneliness is a true killer; it shortens lives. If people are not moving around well, they fall more and consume healthcare resources. Therefore, having green spaces and things such as sports for health, and so on is important. There is now also a body of evidence that the new intensive care units have used in the way that they are constructed, so that there is a view of outside spaces for those patients, rather than the total sensory deprivation that occurs to them in the very noisy and difficult environment of intensive care. Of course, music is used therapeutically during procedures and so on.

In the hospice world, lots of activities obviously go on in the day centres. As my noble friend Lady Greengross said, there is now good evidence for proper physiological mechanisms that explain why contact with these different disciplines—which were considered to be outside medicine—have a beneficial effect on healing, coping with pain and distress, resolving issues, reframing what is happening to you and so on.

I would like us not to forget that loneliness kills. Importantly, so many patients have said that they have a sense of personal worth when they are still able—however ill they are—to contribute to those around them and to a sense of community. These amendments go to the very heart of being human—that is, the inherent creativity within people that has been forgotten for decades in the provision of health and social care.

I can see that there are difficulties in bringing this into the Bill, but we should commend the noble Lord, Lord Howarth, for the sophisticated way in which he has worded some of these amendments. I hope that they can be built on as we go forward. This could save a huge amount of money for the NHS in the longer term. A huge number of side-effects of drugs could be avoided. People could be fitter. There would be fewer forms. There is a great amount of optimism behind these amendments.

[Baroness Pitkeathley (Lab)]

My Lords, what I want to say follows on very well from what the noble Baroness, Lady Finlay, said. I want to quote Sir Michael Marmot. He said:

“We need to adopt a health and social care system which prioritises not just the treatment of illness but how it can be prevented in the first place. The pandemic has made it crystal clear … why public health and … social determinants of health are so important. The health and social care agenda must be rebalanced towards prevention.”


This is essentially what the noble Lord, Lord Howarth, is saying. It is not just about the treatment of illness but about preventing it happening in the first place.

I commend my own general practice in north London. In despair at the quantity of antidepressants being prescribed with very little result, it took to organising community groups to do cooking, set up friendship groups and put people in contact with each other. It puts on bring and buy sales—all with people who, perhaps, in the past, might just have been prescribed antidepressants.

I want to say a word about the charitable aspect—the voluntary sector—to which the noble Lord, Lord Howarth, referred. Charities cannot operate unless their core costs are met. My own GP practice which did this wonderful work had to go to the local authority and to the lottery to seek some funding. We have to remember that, if we want voluntary organisations to participate in these wonderful preventive services, we need to ensure that they are properly funded.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 1 & Committee stage
Tuesday 18th January 2022 Lords Chamber

[Baroness Tyler of Enfield (LD)]

I rise to speak to Amendments 51, 98, 141, 151 and 162 in my name and, briefly, the other amendment to which my name is attached. I shall make one opening remark. This group is all about children and young people. I know that all noble Lords feel very strongly about this issue. Children and young people make up 30% of the population but are not mentioned anywhere in the Bill.

Amendment 51 would require integrated care boards to share relevant information and data with key partners in the children’s system and to collect multiagency data from those partners. As the Bill stands, there are a number of crucial areas in which adults are, rightly, set to benefit from improvements to integrated working in ways that children are not. One of the most concerning ways in which it feels to me as though children have been an afterthought in the Bill is in the sharing of data and information.

Barriers to sharing information have been identified over many years as a key barrier to better joint working, commissioning and delivery of services but, due to the invisibility of children in existing data-sharing legislation, the children’s system faces even greater barriers to sharing information than that for adults. However, the measures to improve the sharing of information and data in Part 2 apply only to the adult system. Frankly, I find that inexplicable.

Alongside the noble Lords, Lord Bichard and Lord Hunt, to whom I am very grateful for adding their names to my Amendment 51, I heard numerous accounts of the huge challenges that the NHS and local authorities face in collecting, sharing and interpreting data as part of the recent Public Services Select Committee inquiry into child vulnerability. We heard this time and again. I quote just one sentence from the report:

“poor data-sharing between Government departments and local agencies endangered vulnerable children and their families by undermining safeguarding arrangements and preventing referrals for early help.”

As we heard from the noble Baroness, Lady Masham, following the heartbreaking murders of Arthur Labinjo-Hughes, Star Hobson and other vulnerable children in this country, it is essential that arrangements for data sharing between the health system and local authorities for babies, children and young people are urgently improved. As I have said, Part 2 focuses on data sharing between health and adult social care but does not extend this to the children’s system. It is not just that children are not specifically included in the wording of the Bill; they have been explicitly excluded.

As the noble Baroness, Lady Meacher, said, colleagues in the sector, including the National Children’s Bureau—to which I am very grateful for its help and support on these amendments—have engaged in discussion with officials on this issue. I was pleased to hear that this engagement is going well and is set to continue, but I hope to secure today the Minister’s agreement to look again at this issue, which is in the best interests of vulnerable children in this country.

Amendment 98 would add the discharge of duty as a safeguarding partner to the general duties of ICBs in Clause 20. It would require new regulations that specify how ICBs should perform the statutory child safeguarding duty when it is transferred to them from CCGs, which are obviously abolished as a result of the Bill. Although the statutory guidance Working Together to Safeguard Children already sets out the responsibilities of a safeguarding partner, the recent tragic events that I have just referred to show that a more robust legislative approach is needed to ensure that children are properly protected by a really effective multiagency safeguarding system.

It was heartbreaking, and I know that all noble Lords in the Chamber were shocked when they heard the details of the tragic death of Arthur Labinjo-Hughes, a six year-old boy who suffered prolonged abuse and was murdered by the very people who were supposed to keep him safe. I recently met the NSPCC, which highlighted government data showing 536 incidents involving the death or serious harm of a child due to abuse or neglect in 2020-21.

Sadly, young Arthur’s case is only one of far too many, but health practitioners such as GPs, nurses, midwives and health visitors are in a prime position to recognise and report safeguarding concerns; during medical examinations they might identify signs of physical or sexual abuse. Missed medical appointments can also indicate neglect. As the strategic safeguarding leader, the ICB will be responsible for ensuring that health practitioners are fully supported to work with other agencies on safeguarding and promoting the welfare of children. Alan Wood’s review from 2021, which has been discussed in the Chamber on a number of occasions, makes clear recommendations on strengthening the existing safeguarding arrangements, which came into effect in 2019, including by ensuring effective leadership, data sharing and scrutiny. The Bill offers a golden opportunity to act on these amendments to bolster local health partners’ role as a lead safeguarding partner and to embed effective joint practices that really do keep children safe.

Amendment 141 would require NHS England to assess how well an integrated care board has met the needs of children and young people in its area. In order to make a judgment about this, the amendment would require NHS England to publish an accountability framework for setting out national priorities for children and young people. Among other things, ICBs will have a crucial role in commissioning primary and community healthcare services directly for children and young people. They will play a key role in jointly commissioning services for disabled children and those with special educational needs, and in contributing to education, health and care plans, and they will be crucial in commissioning the joined-up services in the first 1,000 days of life, which the Government, to their credit, are investing in.

However, as we all know, there is unwarranted variation, with the support that children and young people receive in the health service often based on where they live rather than on their level of need. This amendment would create much needed accountability for integrated care boards and provide an overarching framework for children’s health that ICBs can work within, importantly without being prescriptive in any way about how local systems fulfil their duties.

Turning to Amendment 151, Clause 21 requires every integrated care partnership to develop an integrated care strategy. The amendment would require ICPs to consider specifically the needs of babies, children and young people when developing this strategy. I think the Minister knows my concern and that of other noble Lords—the noble Baroness, Lady Meacher, referred to it—that if we do not refer explicitly to children in the Bill, they will not be given priority equal to the adult population’s when it comes to implementation. Sadly, experience shows that when legislation does not explicitly require health systems to consider children, they are often overlooked in subsequent implementation.

Children and young people have distinct development needs. They use a distinct health and care system staffed by a distinct workforce with its own training, and they are covered by distinct legislation. Simply hoping that integrated care systems will take full account of that of their own accord will just not cut it. A more robust legislative approach is needed. Like the noble Baroness, Lady Meacher, I was also pleased to hear that the Minister in the other place recognised the importance of focusing on children and families in the new ICS structures and made a commitment that the Government would develop bespoke guidance for integrated care systems on meeting the needs of babies, children and young people. That is why I support Amendment 177 in the name of the noble Baroness, Lady Meacher, and to which my name is attached, to put this guidance on a statutory footing.

Amendment 162, on Clause 26, would require the Care Quality Commission to work jointly with Ofsted to plan and conduct reviews into the provision of health and children’s social care in integrated care board areas.

Again, I refer back to my experience as a member of the Lords Public Services Select Committee. I can confirm, as the noble Lord, Lord Hunt, will be able to, that the committee investigated the role played by the relevant regulators and inspectorates. Indeed, we took evidence from the senior leaders of the relevant inspectorates and regulators, specifically Ofsted and the CQC. Our conclusion was that, despite the very best intentions, these inspectorates do not work together closely enough or have a truly integrated approach. It is telling that our report revealed that the CQC itself called on the Bill

“to give it the ‘ability to look at [the] care of children across all settings’ as part of its regulation of Integrated Care Systems”.

I believe that the Bill should give the Care Quality Commission and Ofsted powers jointly to hold integrated care systems, service providers and local decision-makers accountable for the long-term outcomes for children’s health, including health inequalities.

I very much support Amendment 177 in the name of the noble Baroness, Lady Meacher. It has been explained and it very much goes with the grain of my other amendments.

I also strongly support Amendment 142 in the name of my noble friend Lady Walmsley, which would provide an opportunity for the Government to ensure that children and young people are prioritised on ICBs while maintaining local flexibility, which is important. An impact assessment would allow for good practice to be shared quickly and for both Houses to exercise effective scrutiny over the implementation of this legislation.

On Amendment 87 in the name of the noble Baroness, Lady Finlay, the idea of the appointment of a strategic clinical lead for children and young people’s health is an excellent proposal, but I will leave the noble Baroness to express that.

In conclusion, the Government have a very important agenda for children. There are a lot of things that they are trying to do. I strongly support most of them but I really feel that we must have an effective legislative framework to allow that agenda to be taken forward successfully.

[Baroness Finlay of Llandaff (CB)]

My Lords, this group of amendments is particularly important because it concerns the next generation, addressing children and young people’s health and social care needs. As has been said, I have tabled Amendment 87. I have also put my name to Amendments 141, 151 and 162, introduced so comprehensively by the noble Baroness, Lady Tyler. I also support the other amendments in this group.

These amendments address how the needs of children and young people aged nought to 25 will be met by the relevant healthcare and social care provision within the area of each integrated care board. A bonus from recognising this in the Bill would be the encompassing of young people with learning difficulties and autism, whom we discussed last week.

I was struck by a figure raised during the debate in the other place. According to Young Minds, 77%—more than three-quarters—of sustainability and transformation partnerships failed to consider children’s needs sufficiently. Only one of the 42 ICSs in existence listed a strategic lead for children and young people. Given the range of agencies and pathways, someone must have responsibility for the integration of services at the local level and for listening to the needs of young people.

More than 12.6 million children aged 18 and under live in England, yet the Bill reads as if it is written by adults for adults. Let us not forget that an estimated 800,000 children in England are child carers and more than 250,000 of them are likely to be providing high levels of care for their relative.

Alarmingly, the UK is fifth from bottom among 27 European countries for infant mortality, and one in six children has a diagnosable mental health condition. The number of children in looked-after care is rising and we have heard terrible stories of children whose lives have been lost through abuse and illness.