(2 years, 5 months ago)
Grand CommitteeMy Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite her to speak.
My Lords, I will speak about some the issues raised by the noble Lord, Lord Lansley, in relation to the current levels of Covid, when we discuss later on the third of the SIs before us today. I welcome the two sets of regulations that we are discussing in this first section. The first, the Human Medicines (Coronavirus and Influenza) (Amendment) Regulations 2022, modifies and extends regulations with a large number of measures relating to vaccinations for both Covid and influenza. The previous regulations were due to expire on 1 April. I want to put on record our thanks to Ministers and officials for the fact that, this time, we are considering a Covid SI before it comes into force. I hope that this will become routine again from now on.
This SI makes permanent changes to what medicines a range of registered healthcare professionals can administer to NHS and local authority staff. It could be transformational for the NHS if carefully assessed and if the wider group of staff have training and support built into their professional training. It is important that this is extended. The ability to deliver vaccines for coronavirus, influenza and—heaven help us—any other pandemic without the need for a wholesale dealer’s licence to be in place, and for the final stages of coronavirus vaccine preparation to be completed without those extra licences, is important. It is part of a complex legislative framework. I am glad that we do not need to discuss that today but, arising out of it, perhaps I may ask the Minister some questions.
There has been discussion in public in the past few days about the expansion of the fourth booster for certain groups. Can the Minister explain when, if a person has already had their fourth booster, as the severely clinically extremely vulnerable have already had, they would next expect a booster, which would in fact be their fifth? What is the timescale for those who are expecting a fourth booster, having had their third one in the autumn or more recently?
What are the Government doing to keep reaching out to hard-to-reach groups who are not yet fully vaccinated? On the case numbers going up at the moment, I think we all know that those in hospital with coronavirus are predominantly those who have not had any vaccines or their full vaccinations.
What progress is being made towards the development of nasal spray vaccines for Covid, such as the Fluenz Tetra nasal vaccines for influenza for children? Obviously, delivering nasal vaccines needs considerably less training for staff than do injections, although I note that the current flu nasal spray vaccine is live and therefore not suitable for the immunocompromised or immunosuppressed.
What are the Government doing to encourage pregnant and breastfeeding women to get vaccinated, given the confusion that there was last year and the delay before the JVCI said that they should be vaccinated?
As we lift restrictions, it is very much the unvaccinated who are at risk of serious illness, so what socioeconomic and ethnic divisions are there between the vaccinated and the unvaccinated? What has been the most recent clinical assessment of vaccine uptake for the severely clinically extremely vulnerable or, if the Minister prefers to call them this week, the immunocompromised and the immunosuppressed? That is a slightly naughty question because I know the answer, as does the noble Lord, Lord Lansley. We know that some will never make any antibodies at all, while others will make some but they will wane extremely fast.
I was interested to hear the noble Lord, Lord Lansley, discussing post-exposure prophylaxis trials, which are important. I note that, back in June and July last year, the Minister’s predecessor was telling us that pre-exposure prophylaxis treatment would be available very shortly, but in the last two or three meetings that I have been at with scientists and experts, they have said that it is much further away. I hope that the noble Lord, Lord Lansley, is right and that it is not far off. Can the Minister say whether it is going to happen? There is still a problem for the immunocompromised and the immunosuppressed in making sure that they get access to these antivirals and monoclonal antibody treatments.
I turn now to the human medicines amendments relating to the early access to medicines scheme. The review into EAMS in 2016 highlighted that, often, a medicine will be available to a patient under EAMS but, when it makes the transition to being fully available and is going through the final stages of approval, there can be a lull when patients are not able to access it. This is a very particular problem for those who were on it in the trial and for whom it is making their lives a lot more bearable and their health condition much more under control. Suddenly there is a period when they cannot access that medication. Is it proposed that this arrangement changes so that, if you are on a trial, you can continue on it until it definitely will not be approved, rather than having to wait? How will this legislation make that transition smoother? How are the Government prioritising pharmaceutical innovation for the clinically extremely vulnerable?
(2 years, 5 months ago)
Lords ChamberMy Lords, the noble Baroness, Lady Brinton, will make a virtual contribution.
My Lords, the provision of high-quality, personalised care in residential care settings is likely to reduce the chance of complaints being raised in the first place. The Skills for Care workforce review showed that only 44% of care staff have any training on dementia. Will the Government commit to all social care staff receiving tier 2 training in the dementia training standards framework?
The noble Baroness raises a very important point. When we look at the current landscape in the social care sector, it is clear that people do not really understand the overall sector. One thing that we are looking at in regard to the voluntary register is encouraging care staff to come forward to register. Registration includes their standard of education and the qualifications they have received. We will look at how we can improve and have a more consistent qualification system, so that being a care worker is a more rewarding vocation in the future.
(2 years, 5 months ago)
Lords ChamberMy Lords, I declare my interest as a vice-president of the Local Government Association. I will speak very briefly from the Liberal Democrat Benches to offer our support for both the amendments in this group.
The amendment tabled by the noble Baroness, Lady Pitkeathley, Amendment 113, says that unpaid carers, including those under 18, must be properly consulted by the NHS to ensure that they are able to provide the care needed to keep patients safe. In Committee—and, more recently, at the excellent and moving round table with family carers organised by Carers UK, about which the noble Baroness, Lady Pitkeathley, just spoke—we heard evidence of hospitals discharging patients before assessments had been completed and before carers had even been told. The burden that this places on carers is totally unacceptable and unsafe. Worse still—and unsurprisingly—the home arrangements too often break down when family and unpaid carers are not a full part of the consultation process. We support the noble Baroness, Lady Pitkeathley, in this vital amendment.
The second amendment, Amendment 144, to which I have added my name, was tabled by the noble Baroness, Lady Wheeler. The amendment ensures that there are always proper social care needs assessments to ensure that both the family and unpaid carers are consulted, along with the relevant local authority; and that ICBs must have an agreement in place with the relevant parties to ensure that vulnerable people are not discharged without the right support. Some carers are themselves vulnerable people, and we need to make sure that all protections are in place for them too.
Equally importantly, it ensures reporting by the relevant authorities back to the ICB so that it can monitor discharge effectiveness. It says—as a bit of stick to go with the other carrot parts—that the ICB must pay for any
“additional costs borne by a local authority in caring for a patient whilst carrying out social care needs assessments”,
in the event that the patient has been discharged before this was completed.
There are 1.4 million unpaid carers who save the state just under £3 billion a year—and they need more than guidance. Both of these amendments will ensure that the patient and their unpaid carer are assessed and supported properly, and that the key stakeholders—the NHS, the relevant local authority and the ICB—must work together to make this happen.
My Lords, I rise to support Amendment 113. I applaud the noble Baroness, Lady Pitkeathley, both on this amendment and on the years and years of commitment she has given to the support of carers.
It is extraordinary what this Government are prepared to do in this Bill. In revoking the Community Care (Delayed Discharges etc.) Act 2003, they are abolishing the “safe to discharge” test, which requires processes to have been followed to ensure that appropriate and adequate care is, or will be, in place for a patient’s discharge from hospital. The Government are proposing that carers’ rights in primary legislation should be put in statutory guidance instead.
As a member of the Delegated Powers and Regulatory Reform Committee, I am very conscious that, under this Government, secondary or delegated legislation is used more and more to concentrate power in the hands of Ministers rather than in Parliament. The only possible reason for the Government to remove carers’ rights from the Bill, and to put them into secondary legislation, is to weaken those rights. Can the Minister give any reassurance on that point? It is a very important question.
A number of us recently met with a group of so-called adult carers—teenagers and adults—and also with a group of young carers. Both of those experiences were humbling from my point of view. I will mention a couple of points that came up. One teenager rather casually mentioned that she had begun being a carer at the age of three. This is unbelievable, is it not? I forgot to ask her what she actually had to do at the age of three; it is difficult to imagine. But, whatever she had to do, the idea that she somehow had a sense of responsibility at that age is truly alarming.
The other memorable moment was when a teenager was asked, “What is the most difficult thing for you, or the biggest problem that you have as a carer?” I thought she would say that she did not have any time to play with her friends or that she had to do all sorts of boring and horrible jobs that her friends do not. But no, she did not say any of that; what she actually said was, “The biggest problem I have is that the hospital staff won’t tell me how much medication my mum needs. They say they’ve got to talk to my mum, but that’s impossible.” The selflessness implied in that is just completely extraordinary—and of course there were lots of other incredible points.
If these young carers are not consulted before their dependent relative is discharged from hospital, they may be at school or in the middle of a hockey match—it is just unimaginable that this requirement should be in any way weakened. I ask the Minister to take extreme care on this issue when going back and considering the Bill; only then can we be sure that patients are not just medically fit to be discharged from hospital, as the noble Baroness, Lady Pitkeathley, said, but are safe to be discharged—that is, carers or others are there to look after them.
BASW rightly points out that revoking a local authority’s Care Act duty to integrate care and support provision with health provision at the time of the key decision about where a person should be discharged to from hospital undermines the model of integration between social and health care staff—surely the absolute opposite of the whole objective of the Bill. I understand that discharge to assess is probably reasonable for medium and long-term care planning. However, an assess to discharge approach is even more important and should be done in hospital, from the date of admission to hospital. Where is that commitment in the Bill? I look forward to the Minister’s response.
The noble Baroness, Lady Brinton, is taking part remotely. I invite the noble Baroness to speak.
My Lords, I echo the thanks of my noble friend Lord Sharkey to the Ministers and their officials for the very helpful discussions that we have had with them on reciprocal healthcare agreements. I also thank my noble friend for his persistence in leading on those discussions between Committee and Report on the two points of difference between us—the definition of reciprocal healthcare, with our concerns about the ability to create a privatisation of parts of healthcare, and that an SI under a negative resolution is not strong enough for Parliament to scrutinise properly. My noble friend’s amendments are, as he said, very specifically aimed at removing these concerns, and I look forward to the Minister’s response.
I also particularly thank Ministers for understanding that the House was deeply unhappy with the original proposals for regulations via a negative resolution. I hope to hear that Ministers will now agree to the affirmative resolution proposed in the amendment of my noble friend Lord Sharkey. Scrutiny by Parliament needs to be timely, and Parliament needs to be allowed to effectively challenge proposals about which it has concerns.
My Lords, it is a great pleasure to speak about reciprocal healthcare, which is not how I felt several years when we dealt with this exact issue in your Lordships’ House, as many noble Lords might remember. It was with some trepidation that I and these Benches looked at this part of the Bill, because we were so concerned and had to do so much work to protect our NHS in the passage of the 2019 Act.
I am very grateful to the Minister and the Bill team for engaging with us so thoroughly to take on the board our concerns, which needed to be built into this part of the Bill. I say particularly how impressed I am by the noble Lord, Lord Sharkey, and how grateful I am to him for his understanding and persistence—and his ability to read long, complex documents, understand them and then translate them so that other people can understand them too. That is a great talent.
From these Benches, with the idea that the affirmative resolution will be agreed, we are very happy indeed.
My Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite the noble Baroness to speak.
My Lords, I thank the noble Baroness, Lady Wheeler, for introducing so comprehensively this group of amendments on care costs. Given the lateness of hour in Committee, the House needed to hear the detail of this.
Her Amendments 127 and 141, which I have signed and which we will support if she calls a Division, would remove the cap on care costs which was announced and introduced by the Government in the Commons. It was not widely consulted on, and is a deeply unfair element of the Government’s proposals for the new social care payments arrangements. Far from fixing the ongoing crisis in social care “once and for all”, which the Prime Minister said from the steps of No. 10 Downing Street in 2019 he would do, these divisive plans will not stop people needing to sell their homes to pay for care and are a breach of the Government’s promise in that election. It is very important that the Commons have the time to discuss the consequences of the detail of removing that cap now that the announcement has been better understood, especially by the professionals, including the think tanks, who are very concerned about it.
We also support the noble Baroness, Lady Campbell of Surbiton, who will speak to Amendment 143 in the name of the noble Baroness, Lady Bull, which would ensure a zero amount for personal care charges for those under 40. It is absolutely against the spirit of Dilnot and a deep injustice to those under 40 with personal care needs that they are treated the same as those whose working years are behind them. It is a huge injustice that we have an NHS that is free at the point of use and yet younger people with learning disabilities and life-limiting health conditions are charged for essential care. There are also a number of deep, practical contradictions in this arrangement that make it particularly shocking, including a survey that found that charges made by cash-strapped local authorities—made because they could charge them—had forced people to stop the care they needed or made them face difficult choices for financial reasons, with the results showing an increased reliance on family members and high levels of deteriorating mental health, including suicidal thoughts.
Amendment 144A from the noble Lord, Lord Lansley, and as outlined by the noble Baroness, Lady Wheeler, supports the principles behind both Amendments 127 and 141, which would remove Clause 155. It proposes that all provisions on the care cap are brought into force by 1 April 2023 by regulation under the Care Act, resulting in no delay to its implementation. We support that too.
My Lords, the noble Baroness, Lady Campbell of Surbiton, is also taking part remotely. I invite the noble Baroness to speak.
My Lords, the noble Baroness, Lady Brinton, is taking part remotely; I invite her to speak.
My Lords, the noble Lord, Lord Hunt, introduced his Amendment 144B on complaints about care services very well. He is absolutely right: this is a muddle. Are people to go to the CQC or to a particular home when they wish to make a complaint? Any complaints system where the person making the complaint feels in a less strong position than the organisation to which they are complaining, or indeed—sometimes they might even put this strongly—which is wielding power over them is a complaints system that will not work. I hope that the Minister will understand this, and will respond and ensure, first, that there is a clear and understood system, and, secondly, that if some funding needs to be restored to the CQC to take us back to where we were, that will happen.
I want to speak particularly to two of the issues covered in this wide-ranging group of amendments: the licensing of cosmetic procedures and medical practitioners’ financial and non-pecuniary interests. I also have sympathy for the other two, on registration of social workers and hospital rehabilitation accommodation.
The amendments laid by the Minister, beginning with 153A, on the licensing of cosmetic procedures by local authorities and, indeed, Amendment 169 in the name of the noble Baroness, Lady Finlay, on cosmetic procedures, which I have signed, set out models for registration for those who work using devices that breach the skin and who are not covered by medical registration or, currently, by any effective regulation. I know that considerable discussions have taken place between Committee and Report, and it is welcome that the Government have felt that they can now lay their own amendments, signed by the noble Baroness, Lady Merron, and the noble Lord, Lord Lansley. I look forward to hearing the comments of the noble Baroness, Lady Finlay, on those amendments.
Amendment 184ZBB in the name of the noble Baroness, Lady Cumberlege, which I have signed, brings us back to the debate on medical practitioners’ financial and non-pecuniary interests. Our debate in Committee highlighted the problem that the financial and non-pecuniary interests arrangements do not match those that many others in the public sector have to make, where the registration body holds the information. The GMC has said once again that it does not particularly like the style of this amendment and would prefer the records to be held directly by the employer. However, I believe the argument that the registration body, which also has the power to take action, should be the place where these are kept.
I hope that, regardless of whether a vote is called, the Minister will take this away and look at it in more detail. We need an open, transparent and clear system of registration of financial and non-pecuniary interests.
My Lords, the noble Baroness, Lady Masham of Ilton, is taking part remotely; I invite her to speak.
(2 years, 5 months ago)
Lords ChamberThe noble Baroness, Lady Brinton, is contributing remotely.
My Lords, I start by commending Amendment 100 tabled by the noble Lord, Lord Warner, and I look forward to hearing him speak on it. It is an excellent idea to ask people how much choice they have actually had when offered treatment. I also thank the noble Lord, Lord Lansley, for explaining his two amendments, and I would like to say to him that he is not sad for carrying out his role in your Lordships’ House with interest and care. His expertise in matters that may leave others cold should be celebrated. The amendments of the noble Lord, Lord Hendy, ask that trade unions should be part of consultations on private providers, and that seems sensible.
I wish to focus, albeit briefly, on Amendment 106A, which proposes that Clause 70 be left out, and which will be spoken to later by the noble Baroness, Lady Thornton; I apologise to her that under the remote rules I have to speak first. I will confine my remarks to the views of the Delegated Powers and Regulatory Reform Committee’s 15th report, in which paragraphs 17 and 18 make plain its views about these proposed procurement arrangements and regulations. The first point that it notes is that the memorandum, at paragraph 481, says that
“full analysis has not been completed and there has not been time to produce a more developed proposal.”
Why on earth do the Government wish to bring into force legislation that they admit they have not had time to analyse, let alone produce a more developed proposal for? We from our Benches, along with other noble Lords, have repeatedly said that the Cabinet Office procurement Bill is likely to overtake the needs for NHS-specific procurement regulations.
Paragraph 17 of the DPRRC Report gets straight to the heart of the issue and provides a response to the amendments that the noble Lord, Lord Kamall, has tabled, starting with Amendment 101 in this group. It says:
“We do not accept that the inclusion of regulation-making powers should be a cover for inadequately developed policy.”
It is therefore more than a little surprising to see a slew of government amendments on this issue that, in the group under discussion, strengthen the powers under regulation.
Paragraph 18 of the Delegated Powers Committee report states that:
“Ministers would not ordinarily propose clauses in one Bill possibly requiring imminent amendment in a subsequent Bill without expecting to face questions. The House may wish to seek further and better particulars from the Minister concerning the possible effect of any Cabinet Office procurement Bill on the Health and Care Bill, and … to press the Minister on why it was necessary to include provision, based on inadequately developed policy, in the Health and Care Bill when the Government intend to introduce a procurement Bill.”
Not only have we tried this at an earlier stage, but there have been meetings between Committee and Report, and it appears that the Government are determined to press on. I know that the noble Baroness, Lady Thornton, has concerns about the Government’s intentions on the clause and its amendment; if she chooses to call a Division on stand part, we from these Benches will support her.
My Lords, I support Amendments 98A, 98B and 98C. Among other things, the Bill is designed to facilitate the outsourcing to private contractors of NHS services currently carried out in-house. That is the Government’s policy for the NHS, although it is firmly opposed by most of the citizens of this island.
I now call the noble Baroness, Lady Brinton.
My Lords, I am sorry to hear that the noble Lord, Lord Blencathra, is unwell, and I thank the noble Lord, Lord Alton, for his excellent introduction to Amendment 108, to which I have added my name. I also support the other two amendments in this group, which are in the name of the noble Lord, Lord Hunt, who I commend for his consistent campaign on these issues over the years. His Amendment 162 would ensure that there must be informed consent, with no coercion or financial gain, when organs are donated or when UK citizens go abroad for transplants. Amendment 173 would ensure that cadavers would no longer be used for public display unless it is the body of a person which is at least 100 years old, because, as with Amendments 108 and 162, there is real concern that people have been forced to have organs removed, or their bodies have been used after their death—sometimes murder, sometimes execution—but without their consent.
Returning to Amendment 108, it has two clear objectives: the first is to prevent the Government procuring health service goods produced in regions where there is a serious risk of genocide. While the Government say there is no evidence, a New York Times investigation found that PPE made through the Xinjiang labour transfer programme was present in US and international healthcare systems. As we have heard from the noble Lord, Lord Alton, there is increasing evidence that the NHS has procured such items already.
The second objective is to create a process through which the UK Government can be required to assess regions for serious risk of genocide and publish their assessment. This is necessary because the UK Government have given out PPE contracts worth almost £150 million to Chinese firms with links to forced labour abuses in the Uyghur region.
The Government have said that genocide amendments are not appropriate in the Bill and that the Modern Slavery Act 2015 offers protection, but the reality is that the UK is not leading the world here. The US Uyghur Forced Labor Prevention Act creates a “rebuttable presumption” banning all goods sourced in whole or in part from the Xinjiang region of China, unless clear and persuasive evidence can be provided to the contrary; and the European Union is now considering bringing forward new legislation to ban products made with forced labour from entering the European market. The UK’s Modern Slavery Act does not go nearly as far as either of these proposals, merely requiring that companies publish—but not that they act upon—modern slavery statements. People’s lives and human rights are at stake here. Frankly, it is time the UK followed suit with stronger legislation. This amendment would be a strong and careful start that means government and Parliament cannot look away. I look forward to the Minister’s response.
I shall speak very briefly, because I am conscious of the time and that we have a lot of business to do. This amendment seeks nothing more than to create another human rights threshold for health procurement, adding to those that are already in place, which seek to address slavery but have major shortcomings, as the noble Baroness, Lady Brinton, has just described. I keep hearing it being said that a health Bill is not the proper place for an amendment concerning genocide. Well, I am afraid that I do not agree. This is an appropriate place.
We are not asking the Government or the Department of Health to decide whether there is a genocide taking place; we are asking the Minister to take on the duty to assess whether the source of instruments, test kits, protective equipment or whatever may be from forced labour and a situation of slavery. Xinjiang province is the obvious place for us to be concerned about, but there are other places—for example, in India—that we should be concerned about too, and I think that placing that duty on the shoulders of the Minister is a way of concentrating minds. That is why I really press this amendment and I pay tribute to the way the noble Lord, Lord Alton, has so assiduously pursued this. That is all I wanted to say, but I will support this amendment and I urge the House to support it too.
(2 years, 5 months ago)
Lords ChamberMy Lords, I thank Ministers, officials and other Peers, including my noble friends Lord Clement-Jones and Lady Walmsley, and the noble Lord, Lord Hunt of Kings Heath, and the noble Baroness, Lady Finlay, for the discussions that we have had since Committee. I am particularly grateful for the letter from the Minister late yesterday and the meeting this morning.
I have laid Amendment 60, and I support Amendment 116, tabled by the noble Lord, Lord Hunt, which try to protect only the lawful disclosure of personal patient data. For the purposes of the debate on this group, can we accept that this is shorthand for the confidential personal and medical data currently mainly held by GPs and hospital doctors in England? Amendment 60 would provide that protection in legislation and was laid only because we have not yet had a clear response from Ministers on what is permitted and what the existing rules will be relation to ICBs taking over responsibilities from CCGs because ICBs are new bodies. This is in the light of new Section 14Z61. At Second Reading and in Committee, noble Lords expressed concerns that this new section, which outlines ICBs’ permitted disclosures of information, looks very wide ranging and could, for example, enable a police officer, or another person from a public body, to demand the disclosure of a patient’s personal data.
The new section uses the phrase that ICBs can disclose data where
“disclosure is necessary or expedient”
for the person making the request, but nowhere does it explain how the decision is made by the ICB or what the decision-making process is to release the data and, importantly, where the protection of that personal data sits in the hierarchy of the request of necessary and expedient demands. I have asked repeatedly how this process would work, and in responses at the Despatch Box, in meetings and in letters I have not really had a response that has laid out simply and clearly how this process would work. I shall therefore ask the Minister the following questions in an attempt to clarify how a patient’s confidential personal data will be protected and what the process would be for it to be released to a person making a request. What rules and guidance are available for staff, including those in ICBs, to manage a request from a non-NHS person requesting information other than through a court order? How would it be processed and reviewed? ICBs would not normally be the holder of such data, and new Section 14Z61 does not set out the balance between the rights of the patient and those of the requestor who believes they have a necessary or expedient reason for being sent this data.
We wish to be confident that the structures are in place for when shared care records come into force. Let me be clear: from these Benches, we welcome the principle of shared care records, but the processes need to be in place to ensure that personal data is protected when every part of NHS England would have access to that data. I raise this particularly because just this week Health Service Journal stated that the Secretary of State is speeding up the shared care records project to be complete and implemented by December 2023.
Can the Minister therefore commit that the powers in Section 14Z61(1) will be constrained such that for requests of disclosure that come from outside the health and care system, the ICB will only ever disclose the direct care providers the requester could ask instead? Can he confirm that if an ICB is to become data controller for shared care records, he will return to this clause with primary legislation on such implementation?
I am very grateful for the discussion with Ministers and officials and hope that the Minister will be able to provide your Lordships’ House with a response that demonstrates that patient, personal and confidential data remains secure. I look forward to his response, and I beg to move.
My Lords, first, I congratulate the noble Baroness, Lady Brinton, on the brevity of her remarks, which is a model for Report stage. I think she put this across very well indeed and I very much support her.
My Amendment 116 relates to the containment in the Health and Social Care Act 2012 of the concept of a safe haven for patient data across health and social care, which is required for national statistics for commissioning, regulatory research purposes and patient care. My Amendment 116 simply seeks to keep those statutory protections in place and ensure that NHS England does not take on this responsibility as a result of the merging of NHS Digital and NHSX within the structure of NHS England, which was a recommendation of the review led by Laura Wade-Gery. The noble Lord, Lord Clement-Jones, is going to speak in some detail—but with brevity as well, I hasten to add.
Kingsley Manning, the former distinguished chair of NHS Digital, has spelled out the implications of doing this. He believes the action of NHS England in taking over NHS Digital
“is a significant retrograde step in defending the rights of citizens with respect to the collection and use of their health data.”
In a letter to me, which I received yesterday, the Minister asked me why NHS England would be regarded as less independent, transparent or objective in the exercise of these functions, given its already significant responsibility for some data and the fact that it is a very similar organisation to NHS Digital, as a statutory arm’s-length body. In answer to him, NHS England has many different responsibilities and priorities, so, first, it will clearly not be able to give the same focus to the issue of protecting the safe haven and, secondly, it has many interests which could be deemed to at least be in tension with the concept of the safe haven. That is why I and other noble Lords believe it is important to have the statutory protection already contained in the current legislative arrangements.
I conclude by saying that I am at one with Ministers in wanting to speed up digital transformation in the NHS; after all, we have been dabbling with this over many years. But it has to be done right, and the way to do it right is to be very transparent and rigorous about the protection of patient information.
I now invite the noble Baroness, Lady Brinton, who is taking part remotely, to reply to the debate.
My Lords, I thank all noble Lords who have contributed to this debate, in particular for their brevity given the long day we have ahead of us. In particular I thank the Minister for his helpful response.
My Amendment 60 is very specific and I asked for a specific response. The Minister has confirmed what I wanted to hear: that health data is special category data, and that it requires additional protections due to its sensitivity, which would be applied by any ICB when it has had that request. The other key phrase that stuck out was that nothing in the clause overrides the range of requirements in law to provide those key protections and safeguards regarding individual personal data. I am therefore satisfied on that basis.
Briefly on Amendment 116, which is much broader in scope and very important for the future of data use with the proposals that are coming down stream, I agree with all the comments that were made by noble Lords. One particular thing that stood out for me was the proposal of the noble Lord, Lord Clement-Jones, that the publication of the Goldacre review is vital before any final version of Data Saves Lives is made public.
We will not get to a vote on Amendment 116 today. However, could the Minister assist the House and confirm that guidance will be issued, rather than a looser “may be” issued? With that, I beg leave to withdraw my amendment.
My Lords, I shall speak shortly to Amendment 168, but want briefly to refer to Amendment 80, moved by the noble Baroness, Lady Cumberlege, and so eloquently introduced by her, and supported across the House. Workforce planning is critical. Frankly, it is surprising that Ministers resisted amendments in Committee which called for formal long-term workforce planning for the NHS, social care and public health to be embedded in legislation.
The noble Baroness said that that current arrangements can be a bit like sticking plasters, and she is right, but it is not just about the use of bank and agency staff but about planning healthcare professional education. We all know how long it takes to train a doctor, but most of the other professionals also cannot just be turned on and off at election time. There have been too many times when this Government have said at elections that they would suddenly magic thousands of extra doctors and nurses. We need to build timescales into that workforce planning. The noble Baroness also talked about population demand, but I want to make another point: this is not just about population numbers; it is also about demographics. We will need more GPs and hospital professionals managing our rapidly ageing population. If we do not encourage people to go into those specialisms, we will not be able to look after our population in 10, 15 or 20 years’ time.
I also agree with the noble Baroness, Lady Cumberlege, that if government resistance is because of the funding implications with delivering such a plan, that is very short sighted. Not planning will be even more catastrophic. Amendment 80 is more modest in nature but is a critical minimum to achieve a commitment to plan effectively for the NHS, social care and public health.
I turn now to Amendment 168. Given that there are a number of speakers on this important group, I will be very brief here too. The amendment from the noble Lord, Lord Hunt, echoes the one he laid in Committee, and I am pleased to have signed both. We heard in Committee about this frustrating loophole that meant that it was not possible for certain members of the Royal College of Physicians of Edinburgh, the Royal College of Physicians and Surgeons of Glasgow and the Royal College of Emergency Medicine to be added to the list of colleges which could be involved in the appointment of NHS consultants. This is now slowing down the appointment of NHS consultants. I am very pleased to support the amendment and hope the Minister will be able to give good news to the House on this amendment too.
Now I invite the noble Baroness, Lady Masham, who is also speaking remotely, to speak.
(2 years, 5 months ago)
Lords ChamberMy Lords, the noble Baroness, Lady Brinton, and the noble Lord, Lord Howarth of Newport, are taking part remotely; I invite the noble Baroness to speak first.
My Lords, I shall speak to Amendment 17, to which I have added my name, but first I thank the Ministers for listening to the noble Baroness, Lady Finlay, and others, and for tabling Amendment 16. I also thank Together for Short Lives for its helpful briefing.
Your Lordships’ House had a moving debate in Committee that captured the practical and economic need for the wider range of provision of palliative care, and how ICBs can properly fund and plan for it. In Committee, the Minister, the noble Lord, Lord Kamall, said that
“ICBs will be required to have regard to the National Institute for Health and Care Excellence guidelines in their provision of services, as CCGs currently are … NHS England will continue to support commissioners of palliative and end-of-life care services through their palliative and end-of-life care strategic clinical networks. These networks support the delivery of outstanding clinical care by ensuring palliative and end-of-life care is personalised for all.”—[Official Report, 18/1/22; col. 1637.]
The noble Lord’s Amendment 16 provides the specialist services we sought, but it says only
“as the board considers … appropriate as part of the health service”.
Although I join other noble Lords in thanking the Ministers for the amendment, please can the noble Earl confirm that, although the wording of the amendment requires ICBs to commission palliative care “where appropriate”, it is his intention that all ICBs should deem it appropriate, and therefore all of them should commission palliative care services, including for seriously ill children and their families? We know that the provision of palliative care services is very patchy. Will he provide statutory guidance to supplement the amendment and support ICBs to interpret their responsibilities, including for children? When will this be available? What action will Ministers take to ensure that ICBs have the financial resources needed to fulfil the new duty? Finally, what action will the Minister take to ensure that there are enough professionals with the skills and experience needed to provide the palliative care for children that ICBs will have a duty to commission?
We covered all this in very moving stories in Committee. Can the noble Earl confirm that all I have outlined will be covered in regulations and statutory guidance?
My Lords, I am embarrassed to be called to speak ahead of the noble Baroness, Lady Finlay. I understand that the Deputy Speaker does not have discretion to make their own judgment about the sequence of speakers, but I hope this rule can be looked at. As it is, I add my thanks to the Minister, the noble Lord, Lord Kamall, for tabling Amendment 16. He and the noble Earl have graciously paid tribute to the noble Baroness, Lady Finlay of Llandaff. I am sure I speak on behalf of everyone by saying: so should we all. Her vision and persistence have beaten a path towards the progress we can now make.
Although the noble Lord, Lord Kamall, observed in his letter to us that it has always been a duty of the NHS to commission appropriate palliative and end-of-life care services, and that commissioning palliative care is a core function of integrated care boards, these obligations have hitherto been honoured perhaps as much in the breach as in reality. Provision has been patchy, shall we say? I think the noble Earl said that there had been “variations”; indeed there have.
I also acknowledge that the NHS does sometimes provide exemplary palliative and end-of-life care. Many noble Lords will know that my partner Patricia, Lady Hollis, died of cancer in 2018. I express my deep appreciation of the quality of palliative and end-of-life care she received at the hands of the NHS. I particularly express my profound gratitude to her NHS consultant at the Norfolk and Norwich University hospital, Nicola Holtom, and her team, and to others providing community services, because it eased Patricia’s path and made a huge difference to all of us who cared for her.
Sadly, for all too many, including cancer patients, this quality of service has not been available. Indeed, for some there has been no relevant palliative care and end-of-life service. This could therefore be a historic moment, but it is far from certain that it will be. I of course accept that Ministers are acting in good faith, but the indeterminate drafting of Amendment 16 leaves rather a lot of wriggle room. For an NHS which is always short of the resources that it needs and that is struggling to cope with its existing workload, it remains a danger that the provision of palliative care will be sparse. The language of Amendment 16,
“such other services or facilities for palliative care as the board considers are appropriate”,
does not make it clear that it will be an inescapable duty of ICBs to ensure that palliative and end-of-life care is a universal service and that there will be a duty on ICBs to provide high-quality palliative care.
The Minister indicated that he does not expect to agree to write into the legislation Amendment 17, in the name of the noble Baroness, Lady Finlay, which specifies in very useful detail what the nature of an exemplary service would be. He said that it would be better to do this by way of guidance. I am encouraged at least to know that it is the department’s intention to provide guidance and to set out models of how ICBs should set about fulfilling this duty. But what measures will be in place to ensure that this happens? What monitoring does he envisage? What reporting requirements will there be?
I have another question which I think is very important: how will the system enable patients and families to know what palliative care is available for them and how to access it? As things are, so often patients and their families are bewildered. They just do not know where to turn amid the complexities of the system, and they often feel discouraged by the responses they receive. They seem to observe the buck being passed between the NHS and social services and between different entities within those services.
I know that Ministers want to do the right thing, but it is important that we do not miss this opportunity to bring about the real thing. If we can be assured that the quality of provision will be as high as that envisaged in the noble Baroness’s Amendment 17, and that the department and NHS England will have systems to ensure that that is so, this could indeed be a transformative moment—a moment after which there will be the prospect that, instead of experiencing a bleak death, as so many people do, they will have a good death, and that will be an enormous consolation to their families, for whom, in their bereavement, the passing of a loved one is the greatest suffering.
(2 years, 5 months ago)
Lords ChamberMy Lords, it is a pleasure to follow the introduction from the noble Baroness, Lady Thornton, of her Amendment 9, which I signed. It is the first of a group on the structure and membership of integrated care boards—including the Commons amendments to which she referred. We agree with the noble Baroness and have concerns about the possible loophole of sub-committees. Before I go into that, I will add my thanks and congratulations to my noble friend Lady Walmsley on her excellent proposals for a skills audit and thank Ministers for agreeing to them. I hope that the Minister will reflect on some of the other amendments in this group that seek to ensure core representation from certain key groups within the NHS.
In Committee we had a lengthy debate on the roles and responsibilities of those who may have current or past connections with private sector providers. A key element of that debate revolved around the duties of board members and sub-committee members of the ICB to have its duties at the heart of all they do as they commission using public money. In his response to that debate, the Minister said that
“each ICB must make arrangements on managing the conflicts of interest and potential conflicts of interest, such that they do not and do not appear to affect the integrity of the board’s decision-making processes. Furthermore, each appointee to the ICB is expected to act in the interests of the ICB.”—[Official Report, 13/1/22; col. 1308.]
Amendment 9 seeks to clarify exactly what is meant by “each ICB” by looking at the structures for those that make decisions—which includes sub-committees. The noble Baroness, Lady Thornton, described the difficulties in the example of Virgin Care that demonstrate the loophole she spoke of.
I want to go back a step to the principles behind conflicts of interest. In 1995, the then Conservative Government adopted the seven Nolan principles of public life, which are applied to all who hold public office. Members will know very well that these key principles of personal and corporate behaviour are a golden thread running through the public service that any officeholder delivers, and health bodies are specifically included in the rubric of Nolan. All seven principles are absolutely intrinsic to how an ICB and its members will operate, whether at board or sub-committee level. To pick just two, they must have integrity, including not to
“act or take decisions in order to gain financial or other material benefits”,
and they must
“act and take decisions in an open and transparent manner”.
Amendment 9 expresses exactly the type of arrangement that a public-facing body, even a sub-committee that commissions public services, should have in place. I ask the Minister: would any Government not want conflicts of interest in respect of sub-committees of ICBs to be clear, unambiguous and strong? Is he really arguing that each board should not have that wall of protection in ensuring the integrity of its decision-making processes, as set out in proposed new subsection (4)(a)? Does he think that it is appropriate not to have an appointment process that avoids the appointment of anyone who would be perceived to have a conflict of interest, as in proposed new subsection (4)(b)? Does he also not agree that anyone who has a conflict of interest or potential conflict of interest should not have information that
“might be perceived to favour the interest or the potential interest”,
as set out in proposed new subsection (4)(c)? If the Minister cannot answer those questions, I fear that some noble Lords might be concerned that the Government have abandoned the Nolan principles for some people on sub-committees who will make decisions on commissioning many millions of pounds of public funds. I look forward to his response.
My Lords, with the leave of the House, I hope that noble Lords will find it helpful for me to speak early in this debate, since we believe that government Amendment 31 addresses some of the concerns raised by noble Lords. I shall, of course, listen carefully to the rest of the debate and respond in full at the end.
In speaking to Amendment 31, I thank noble Lords from across the House for the wide-ranging discussions in the Chamber on membership of ICBs. We are grateful for the discussions. Many noble Lords have offered their gratitude to the noble Baroness, Lady Walmsley, for the suggestion on the skills mix. We accept the spirit of these amendments and agree that it is important that ICBs are populated by members with the appropriate range of skills and expertise. I know that noble Lords have heard this many times, but it is also important that we do not over-prescribe, as ICBs should have the flexibility to design their boards to meet their needs, while also ensuring they have the skills and experience necessary to properly discharge their functions.
We have listened, and I hope that the amendments we have brought forward, which require ICBs to consider these skills, knowledge and experience, address those concerns while also ensuring balanced, workable boards. When the amendments refer to the necessary skills, knowledge and experience, that is in relation to the discharge of all the ICBs’ functions, including those related to mental health, children’s health, public health, public and patient involvement, engagement with the voluntary, charity and social enterprise sector, and digital innovation and integration. Therefore, these amendments would help to ensure confidence that ICBs have the necessary skills and expertise to discharge these functions, while allowing them to retain discretion in how they deliver this. This approach has been welcomed by stakeholders, including the Allied Health Professionals Federation, which represents 12 professional bodies representing allied health professionals.
The second, connected amendment would ensure that an ICB reports on how it has discharged this new duty in its publicly available annual report. This will allow public scrutiny of ICBs and create confidence that they are drawing on an appropriate range of skills, expertise and knowledge. This is in addition to governance of ICBs being clearly set out in their constitutions, which will also be published and signed off by NHS England. As I have said, I shall listen carefully to the rest of the debate, but at this stage, for these reasons, I commend these amendments to the House.
(2 years, 6 months ago)
Lords ChamberMy Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite the noble Baroness to speak.
My Lords, I declare my interest as a vice president of the Local Government Association. Both the Statement and the White Paper set out a laudable ambition to integrate health and social care and communities, but I am afraid that we echo the disappointment of the noble Baroness, Lady Thornton, especially at the glaring omission of children, young people and disabled people who need care.
While reading the White Paper, I had a sense of déjà vu, and I dug out my copy of the White Paper Integration and Innovation: Working Together to Improve Health and Social Care for All, which was published on 11 February last year—almost exactly one year ago. The tone and the ambition were remarkably similar. All noble Lords know that the Health and Care Bill we are debating at the moment sets out in part how the Government believe that the White Paper from last year is going to be turned into legislation and changes in practice. The Minister knows the real concerns across the House about that practical implementation, and I do not believe that this new White Paper takes matters further forward.
From these Benches we also ask: where are carers? There is zero mention of carers in the Statement but 13 in the White Paper, two in the index and two as part of headings. The remaining nine in the text relate only to the people carers care for. There is no formal recognition of the role and no mention of support directly for them as carers. It says:
“People will move seamlessly between health and care settings because people and those supporting their health and care, including … unpaid carers, will be able to see and contribute to their care record and care plans.”
Is that the best on offer for carers—that they will actually be able to see the care plans? They can usually see them now, although most, I must confess, are still in paper format.
That was one example; I want to go on now to a couple of other issues. Much of the paper talks about how data will transform care in the future. On page 14 it says:
“A core level of digital capability everywhere will be critical to delivering integrated health and care and enabling transformed models of care.”
Can the Minister say—because the White Paper is absolutely silent on this—whether there will be funding for fast broadband across the country, especially in rural areas, to deliver that capacity to every single home? Without it, this entire system will fail before it even starts.
The White Paper also says that
“the data and information required to support them should be available in one place, enabling safe and proactive decision-making … We will aim to have shared care records for all citizens by 2024 that provide a single, functional health and care record which citizens, caregivers and care teams can all safely access.”
Can the Minister say how citizens’ data will be protected so that only those who need access to it will see it? As the Minister knows, this is another area where there is real concern over the Bill.
The paper talks extensively about leaders but in a generic way. There are muddles over NHS leaders, social care leaders and leaders of ICBs. Is it referring to council leaders or just leaders? I have to say that the organogram on page 37 makes the classic assumption of councils being single-tier metropolitan authorities, ignoring the plethora of two-tier council arrangements as well as other key stakeholders such as housing associations. It talks about
“3-5 local authorities within an Integrated Care System”.
Even at upper-tier authorities, that number is way too small with the shadow boards at the moment, and dwarfed when you add in district councils, which have key roles in delivering support for care. Unless this is hiding a proposal from the Secretary of State for Levelling Up, Housing and Communities, this is another massive reorganisation for local government.
Housing is vital to the aims of the Bill. The paper says:
“People’s homes should allow effective care and support to be delivered regardless of their age, condition or health status.”
But housing is not mentioned in the “Next Steps” section. I ask the Minister whether there will be specific funding to ensure that housing can be improved at a local level for people who will need it for the next stages of their lives.
The Statement and White Paper recognise the importance of the workforce—in theory. The section in the White Paper talks about continuous development and joint roles, some of which is very laudable, but what is actually happening in the Health and Care Bill at the moment, where the Government will not commit to proper planning for the workforce, makes this unattainable too.
Above all, from our Benches, we want to know where the resources are that will enable this transformation to take place. Even before this week’s announcement about the patient backlog, the levy for health and social care was already prioritised for the NHS. Every time we have asked the Minister when the social care sector will get the resources it so desperately needs—and what they will be—we are told that it will happen at some point in the future.
We need to know when social care and councils will get the support they need, particularly councils with extra responsibilities in this White Paper and the Bill. The LGA has said, correctly:
“Adult social care is in a fragile position, with councils struggling to balance their budgets … A long-term funding solution is urgently needed.”
Can the Minister tell the House what, where and when resources from both departments will be announced and made available to at least give this White Paper half a chance to get going?
I begin by thanking both noble Baronesses for their questions. I will try to answer them within the time and, if I do not, will write to the noble Baronesses or others. I will go through some of the issues, first on place-based models.
As we discussed on the Health and Care Bill, ICBs operate at a system level. They will be working with place-based organisations, including health and well-being boards. We expect several models of place-based alignment and governance to emerge and we are not going to be prescriptive about a single model. We are clear that, whatever model is adopted, in the coming years all places must be characterised by clarity of leadership and accountability; a strong shared mission across the sectors, informed by local citizens; a commitment to integration manifested in removing unnecessary boundaries between services and strengthening connections to agencies able to influence the wider determinants of health and well-being; a strong culture of improvement; and a linked sense of urgency about the need to deliver more integrated care to improve outcomes, particularly care quality.
By that we mean that we do not start thinking in siloed ways—of hospitals or primary care, with social care over there. All these White Papers are building-blocks to help explain some of the intentions behind the Health and Care Bill. The Bill itself creates a flexible framework based on the real experience of making effective change happen locally. This flexibility is designed for a purpose: the stronger integration of health and care services. The White Paper picks up that ambition by making clear the strong commitment of the Government to this agenda and our ambition to make progress. The White Paper will ensure that we go further and faster on health and care integration with local authorities and the NHS to make the most of the forthcoming legislation. It does not contradict the Health and Care Bill.
I will pick up on accountability. Three things are different. There is a wider recognition of the demographic challenges we now face, which will increase. We cannot manage it as just health any more or, even within health, primary, then secondary and care over there. The pandemic showed us that some of the cultural and governance barriers to change that seemed impossible to shift have moved. We have seen this work in lots of places up and down the country. There are some model ICSs, which many noble Lords have drawn my attention to, and case studies; we want to learn best practice without being overprescriptive. The noble Lord, Lord Mawson, has talked effectively about place-based organisations many times and getting the right mix of skills and people for a particular place. What works in east London will not necessarily work in South Yorkshire. Some of it will, but some of it will not. We will learn from best practice.
We can be confident that the approach to accountability set out in the paper will work, because it draws on real examples that are already in place. If you ask local leaders what accountability means to them, they will be able to tell you who can ultimately hire and fire them. That is one version of accountability. They will also give you a list of the people and bodies to which they are accountable—partner organisations, local democratic institutions, staff, patients and service users, as well as regulators. We want to make sure that all that comes together to address accountability.
We hope to have shared care records for all citizens by 2024 but, as noble Lords will remember from the debate about data last night or early this morning, we have to get that balance right to make sure that people trust that data will not be shared unnecessarily or inappropriately. One of the key challenges for any integration is that it needs data across primary, secondary, social care and other agencies but, at the same time, we have to allow people to opt out. When people opt out, they might have to re-register a number of times. We want to avoid people, particularly vulnerable people, being asked the same question time and again. We hope that integration and people speaking to each other will help across the health and social care sector.
On carers, I was in fact having conversations yesterday on that subject, and I am going to be doing a round table with a number of noble Lords. One of the issues is making sure that we professionalise and give real respect to the caring workforce. One of the reasons why we set up the voluntary register was to understand the landscape of care, the different qualifications and levels, so that we can get a clearer understanding of what qualifications carers need and how we can make sure that works across both health and social care, so that staff can move between health and social care without feeling that one is better than the other.
We want to build on existing reforms. We want to talk to a number of partners—the noble Baroness, Lady Brinton, mentioned housing, for example—and in the adult social care White Paper we looked at ideas about people being treated at home, some of the things that will have to be done at home, whether that is done at system level and how to make sure that partners are working together.
One thing I will say is that the vast majority of care workers are employed by the private sector. The increase the national living wage means that they will benefit from a pay rise, but we have also put in money. Some private providers feel that they are using private profits to subsidise others. We are making sure there is more money to make sure that we get a better quality of service right across. What we really want to do is say, “Tell us where it doesn’t work and where it breaks down” and to make sure that at the place-based level they are able to work together. We will speak to as many stakeholders as possible and we will continue to ask them to inform us.
I will try not to run over time, but I shall talk about the single accountable person. This will be agreed by the local authority and the integrated care board. An increase in long-term conditions and an increase in the number of people being treated for them means that, increasingly, the co-ordination between the range of services looking after them can fall apart; we know that too many people fall between the cracks. That is why we want to have the single accountable person—so that we can make sure that people are no longer falling through the cracks.
I know I have gone on a bit long, so I will allow other questions to come in, but I hope that addresses some of the concerns.
(2 years, 6 months ago)
Lords ChamberMy Lords, the noble Baroness, Lady Brinton, has indicated her wish to speak. This may be a convenient moment.
My Lords, this paper’s economist authors admit that it reflects their opinions. Extraordinarily, they chose to exclude the most recognised epidemiological research on excess deaths. It is not even peer-reviewed. The conclusions are contradictory to the established annual excess death protocols, published for years by the ONS and other national statistical agencies around the world. Which data should scientists advising the Government and Ministers rely on when making decisions about lockdown?
The noble Baroness makes some important points about the meta-analysis in the paper. Undue attention has been given to one paper out of 34 studies. While I am answering the noble Baroness, I will refer to an earlier question. In academia there is a huge debate about meta-analysis in all sorts of fields. The question is what other research should be analysed with meta-analysis. This continues to be an issue of debate among academics in many disciplines.
(2 years, 6 months ago)
Lords ChamberMy Lords, I invite the noble Baroness, Lady Brinton, to speak remotely now.
My Lords, this amendment is a companion piece to the previous amendment on declarations of interest that we believe should be made by doctors and other regulated healthcare staff, and ensures that any companies involved in the production, buying or selling of pharmaceutical products or medical devices must publish any payments made to teaching hospitals, research institutions or individual clinicians. Whether someone wants to know about a doctor working with a pharma company, or the other way around, we need a system that provides a golden thread of transparency and accountability.
Reporting payments or benefits in kind by the relevant organisations and individuals receiving them ensures that the links between donors, recipients and their respective interests are always visible. Although it is, we hope, rare, this is more than just transparency. As in any walk of life, occasionally there is malpractice and fraud, which needs to be prevented. A register such as this helps to remind all those concerned of the rules.
I echo the comments made by the noble Baroness, Lady Cumberlege, that “may” is not strong enough: “shall” is important here. The noble Baroness also referred to the USA Sunshine register; and, as I said on the last group of amendments, we definitely need the disinfection of sunlight. Can the Minister say whether any such regulations on industry reporting might be published and brought into force?
My Lords, I invite the noble Lord, Lord Howarth of Newport, to speak remotely now.
My Lords, I will be very brief, as the noble Baroness, Lady Finlay, has comprehensively explained why her amendment, Amendment 287, which seeks to create a dispute resolution mechanism in children’s palliative care, is important. There is no doubt of the challenges experienced by parents who are facing the dreadful news of their child’s deteriorating health and likely end of life, and who are trapped in a process that makes them feel as if their requests for new, different or more treatment are being refused by the hospital, not least if they feel that the hospital is acting as prosecutor, jury and judge against their wishes.
However, as the noble Baroness, Lady Finlay, has outlined, one must also sympathise with doctors and other healthcare professionals who believe that they are doing the best for the child in these distressing circumstances. For these cases to end up going through the courts is not a good dispute resolution process. The noble Baroness, Lady Finlay, has also outlined the extreme costs to the NHS and to the parents of the child. We now need a system, even if rarely used, which parents can feel is independent but medically expert to help to resolve and mediate the dispute when the relationship between them and the hospital has broken down.
My Lords, I added my name to Amendment 287, and I thank my noble friend for tabling Charlie’s law. Charlie Gard’s case was painful for all involved, including his parents and the doctors at the hospital where he was receiving treatment. Protracted disagreements can have far-reaching effects, particularly when they are played out in public, as has happened in a small number of cases. For the child, it can mean a delay in a decision about their care and treatment. For the parents and family of the child, there can be enormous distress, feelings of loss of control, and financial strain. Healthcare staff can also experience stress and anxiety, and they might be subjected to intimidation.
The parents of Charlie Gard, Alta Fixler, Alfie Evans, Tafida Raqeeb, and many others, wanted to do what any parent would do to try to improve their child’s condition and alleviate their child’s suffering. However, it is evident that the parents in such cases do not feel adequately heard and listen to when discussing options about their child’s treatment. This results in the devastating conflicts that lead to litigation. With this amendment, parents would be given the chance to discuss their views openly with the clinicians and hear the views of those clinicians, too.
Too often in my career, I have heard distressed parents described as “difficult” and “impossible to work with—nobody can work with them”. These are grieving parents who are looking for someone they can trust to help them. Mediation can sometimes help parents, and professionals to acknowledge that the consequence of conflict has been to shift focus away from the needs and welfare of the child. An independent mediation process can help to facilitate less confrontational conversation while supporting both parties. Thus, it provides support for both. Mediation across England is inconsistent. It needs to be available in every NHS hospital where conflict emerges, and at an early stage, so that the lives of very sick children such as Charlie are less likely to escalate to court.
In the rare event that a child’s case escalates to court, the amendment seeks to provide access to legal aid to ensure that families are not burdened with the financial strain of legal representation. Currently, families in this position are effectively punished, both financially and emotionally, through litigation for simply doing what they strongly believe is in their child’s best interest. Although this amendment makes provision for legal aid, the main purpose is to keep cases such as Charlie’s out of court, rather than arming everyone to be prepared to enter into long-winded and expensive legal disputes. Parents would not automatically win the right for their children to be given novel treatment, but the amendment would rebalance the dialogue towards resolution, rather than towards costly and distressing legal battles that do nothing to help the parents’ grief.
I also strongly support the introduction of the significant harm test. This legal test would focus on whether an alternative credible medical treatment could cause a child “disproportionate risk of significant harm” when deciding whether a parent can seek that treatment for their child. A key point here is that no medical professional would ever be required to give care or treatment that they did not view as in the best interests of the child. The legal test is already widely used under the Children Act 1989 and should be applied to cases such as Charlie’s in the future. I am strongly in support of this amendment and commend it. It is a just and necessary package to support parents and doctors, and I hope the Minister will be in a position to welcome it.
My Lords, the noble Baroness, Lady Brinton, is also taking part remotely. I invite the noble Baroness to speak.
My Lords, I thank the noble Baroness, Lady Greengross, and others for the amendments in this group, which would help transform some of the long-standing problems in social care, as well as improve the quality of life of patients and their families, especially those who care for them. I will speak to Amendment 297D, in the name of the noble Lord, Lord Hunt, which seeks the establishment of a review into institutional abuses in care settings within six months of the passing of this Act.
Amendment 297D talks about the effects of restrictive visiting and eviction notices
“on the emotional, psychological, social and physical health of service users, and on the well-being of service users”
and their families. Obviously, “restrictions on visiting” has taken on a whole new meaning throughout the Covid-19 pandemic. I note that the Rights for Residents campaign group has secured more than 270,000 signatures on a petition for a law that ensures that
“every resident has the legally enforced right to the support of an essential visitor”.
Currently, homes are meant to support an essential caregiver for all residents—but this is advisory and some homes are still imposing blanket bans on visits. That may be because they have some Covid infections inside the home, but that is not universally true.
There is still no clear picture of how visits are going on in care settings. These could be difficult for residents with dementia, for example, if there is only a very small window for visiting—and perhaps it is just not the right time or the right day for them.
Unlock Care Homes is also doing work on this, including highlighting good practice. It is important to remember that most care homes are not just doing their best, they are doing really well with looking after their residents, despite the constraints of the pandemic, staff shortages and burnout.
Time and again, investigative journalists are uncovering practices going on in care settings that are inhuman, breach vulnerable residents’ human rights and damage patients’ mental, physical and psychological well-being. The noble Baroness, Lady Masham, referred to a long list, and that list is indeed shameful.
A series of scandals led to a CQC report into restraint, seclusion and segregation for autistic people and people with a learning disability being commissioned in 2018. It was published in October 2020. The report said:
“We found too many examples of undignified and inhumane care in hospital and care settings where people were seen not as individuals but as a condition or a collection of negative behaviours … We also found that a lack of training and support for staff meant that they are not always able to care for people in a way that meets those individuals’ specific needs. This increases the risk of people being restrained, secluded or segregated.”
However, the Government have not yet commissioned a review of the entire sector, to understand and learn from the causes and poor practices that have resulted in those institutions failing their residents. Commissioning such a review would demonstrate that the Government really want to bring a halt to these practices.
My Lords, Amendment 297A is in my name and those of the noble Baronesses, Lady Smith and Lady Cumberlege, but I am also supportive of the other amendments in this group.
With people living ever longer, looking after older people so that they can stay healthier for longer is critical, as is ensuring that they receive the care they need and have a dignified and secure old age. Amendment 297A seeks to introduce a new clause that will not only lower, from 75 to 65, the age at which every patient is assigned a named GP but sets out to ensure that named GPs will actually have to meet and have some knowledge of each patient they are responsible for, and will communicate directly with them and the family.
We need to encourage everyone to take responsibility for their health. Having good and regular health checks is an essential part of the prevention of ill health, as well as leading to earlier identification of conditions and earlier interventions. I am sure that other noble Lords who are doctors will put me right, but I was once told that 65 is an age where things can start to go wrong. Therefore, it is important to start monitoring people’s health and being able to identify changes from this age. This will deliver better outcomes and may also enable people to stay at home and lead a fuller life for longer. The role of the GP in all this is absolutely critical.
My Lords, I call the noble Baroness, Lady Brinton, who is taking part remotely.
My Lords, I am a former trustee of UNICEF UK and, before that, Christian Blind Mission, a global disability charity. I have seen first hand the two-tier system of access to global vaccines and medications. It is a pleasure to hear the noble Baroness, Lady Chakrabarti, set out how, through her Amendment 292, the UK can fulfil its global public health responsibilities for investment in research into vaccines and other health technologies and how, in an emergency, companies developing these goods would also be required to help. She has introduced it in her usual effective and persuasive way. I suspect I am not alone in valuing her contributions to your Lordships’ House.
Throughout this pandemic, the Government have rightly congratulated themselves on their investment in research on the range of vaccines developed in rapid time and also the extensive, rapid clinical trials assuring their safety prior to approval. However, less satisfactory has been the UK Government’s view about their international moral responsibilities as a member of the OECD and one of the high-income countries with access to much-respected vaccination and pharmaceutical research. The World Health Organization has said right from the start of the pandemic that no country is safe until all are safe, but low and middle-income countries have not just not had the advantage we have; we have reneged on our promises to them over the last two years.
The UK Government repeatedly tell us that they have donated cash to Gavi and COVAX, but the reality is that we need to help those countries now to become able to manufacture their own medicines and vaccines in the light of emergencies such as future pandemics. The old adage of “Give a child a fish, feed them for a day. Teach a child to fish, feed him for ever” is so true. Here, the fishing rod is the skills to manufacture and sell medications in a future pandemic.
The TRIPS waiver, or intellectual property waiver, is supported by the World Health Organization and many large charities and countries, including the USA and others. However, as we have heard, the EU, the UK and Switzerland are not in that bracket. Its intention is to increase vaccine production in developing countries by sharing intellectual property for vaccines publicly for the period of that pandemic. It is needed because the data for November 2021, nearly a year from the first vaccine being delivered, showed that just 4.2% of people in low-income countries had received their first Covid vaccine. Across Africa, 6.3% are now fully vaccinated. COVAX has shipped just one-third of what it had expected would be available by the end of October—those expectations were based on promises from high-income countries. Export bans, manufacturing delays and bets on vaccines that have not received regulatory approval have also held up deliveries. Worse, we know that in this country we have thrown away vaccines rather than redirect them if we chose not to use them at a particular time.
It is time that the UK took a leading role in fulfilling the World Health Organization’s call. Now is the time to make all countries safe, not just for Covid but in preparation for whatever future pandemics may occur, and make sure every country is safe in the future.
My Lords, I want to speak narrowly to subsection (5) of Amendment 292, where it refers to the waiving of intellectual property rights and the protection of undisclosed information, and also where it refers to the waiving of agreements, all in an effort to assist global manufacturing. It provides a peg for me on which to hang the holy question of inadequate vaccine supply arrangements for third-world countries and, in particular, the need for greater manufacturing capacity, which would be assisted under a system of global waivers.
Two weeks ago, there was an interesting contribution from the noble Lord, Lord Grimstone of Boscobel, where, in reply to my noble friend Lady Chakrabarti, he said,
“there is no evidence that waiving intellectual property protections would advance these objectives,”
those objectives being
“help with vaccine production and distribution.”—[Official Report, 24/1/22; col. 8.]
I simply do not understand the Minister’s logic. As I see it, it is perfectly possible to manage such manufacturing requirements under directly monitored, subcontracted, licensee production arrangements.
In the same exchange, my noble friend and I went on to call for the 100 potential manufacturers in Africa—indeed, my noble friend has done it again today—identified by a number of charitable organisations to be encouraged to produce a Covid vaccine in approved plants under the subcontracting arrangements I have referred to. The Minister in reply, quite rightly, appeared preoccupied by ensuring companies were able to continue with “innovation.” I totally agree on that. That is a laudable objective that we all support. However, what evidence is there to suggest that in an entrepreneurial world, production under the carefully constructed management arrangements I have suggested deters innovation?
My suggestion in my original contribution was that it is perfectly possible to produce a vaccine and its subsequent product variants in dedicated production areas in approved plants and specialist facilities under the quality control of personnel seconded from advanced-nation producers. That is what I am asking for in the questions I have been asking repeatedly. What is the problem? How can that possibly destroy innovation as Ministers are suggesting? On the contrary, it raises greater challenges. It is a spur to increased innovation and, additionally, profit-taking, which I recognise is an important factor in funding research and development.
With less than 10% of the population in the world’s poorest countries being vaccinated under current vaccination production arrangements, we are prolonging the pandemic by leaving the door open to new variants. New variants will inevitably appear in under-vaccinated populations or, more specifically, in under-vaccinated ethnic groups which, often through a lack of available, detailed knowledge and under peer pressure, remain unconvinced of the need for vaccination.
I simply cannot understand the commercial, political or moral logic behind a failure to sponsor vaccination production under the arrangements I have outlined. We in the UK could be leading the world through this crisis if my suggestion was followed. We have spent billions on support schemes, much of it, sadly, wasted and lost in fraud. We could have spent much of that on vaccine initiatives. I think we are missing a trick, but it is not too late, as these pandemics are here to stay in one form or another. I appeal to the Minister to free up the market and pursue the strategy that I, and others far more significant than I, have been suggesting in this debate.