Down Syndrome Bill

Lord Russell of Liverpool Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[Baroness Blower (Lab)]

My Lords, I rise extremely briefly to add my support to the Bill and to acknowledge that the question of “nothing about us without us” is very significant.

I began teaching in 1973, and would never have found a child or young person with Down’s syndrome in a classroom in front of me, but things have changed and moved on significantly. When I told my daughter, who now teaches a year 4 class, that I would be in the House of Lords today to hear a debate on guidance about services for people with Down’s syndrome, she said, “That will be really exciting, and so necessary”. One of the things she said to me was, “There just aren’t sufficient representations of the vast range of people that there are in our society available to us to use in our classrooms”. She is a young person who definitely wanted to go into teaching because she felt that it was important to be in a classroom with a range of people with different conditions.

I listened carefully to the noble Baroness, Lady Stowell, and I share her concern that, at a time of constrained resources, there might be a tendency to say, “We have to do this; we don’t have to do that”. But I hope we are better than that. It is so important that we fund the services as they are assessed—that we fund for need, not because a particular person happens to have a particular diagnosis or condition. On that basis, even though this is a small step and there is a risk—unless we fund everything properly—that some people may feel there is privileged treatment, I wish the Bill well.

However, since some of the “relevant” bodies that appear here are school governing bodies, the providers of early years services and academy proprietors, I want to be absolutely sure that the Government will be very clear that all those institutions have a big responsibility to read, understand and follow the guidance. That is an education matter, rather than a medical one.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely and I invite her to speak.

Health and Care Bill

Lord Russell of Liverpool Excerpts

Lords Hansard - Part 2 & Report stage
Wednesday 16th March 2022 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, we now come to the very real problem that relates to the power differential between a doctor and the parents of a sick child. I am most grateful to all who have met me and discussed the amendment, particularly some senior paediatricians and the charity Together for Short Lives, and for support from the Charlie Gard Foundation in redrafting this amendment.

The amendment has been carefully redrafted in the light of comments made on the earlier version. Everyone I have spoken to has recognised that problems sometimes arise. In its 2018-19 review, the Nuffield Council on Bioethics observed common themes behind disagreements—communication issues, differing perspectives on what kind of risks could justifiably be taken, feelings of powerlessness for both parents and staff, and delays in seeking resolution interventions. Among the recommendations is mandatory communications training, as in proposed new subsection (2)(a) in the amendment, and the timely use of effective resolution interventions such as mediation, as in proposed new subsection (2)(e). When parents, as most do, have looked up their child’s condition on the internet, they often come across suggested treatments on different websites or by talking to medical contacts that they have. Clinicians can feel threatened by that.

When parents are worried, they can come across as angry or difficult in their attempt to get information or get something done. All too often, they are labelled as overanxious. Yet, is it normal to be out of your mind with worry if your child, whom you adore, looks as if they might die.

This amendment tries to provide a route for everyone to communicate better, and for the temperature to be lowered. It applies where there is a difference of opinion between the parents and the responsible doctor when a child is thought to be nearing the end of life. When staff become aware of a difference of opinion, the clinicians need to listen to the parents, and others concerned with the child’s welfare, who may have important information to inform thinking. Parents who want to seek a second opinion want to know the results of tests, such as radiology, for example, and, at the moment, they must go through a complex and sometimes slow process to access the information. Sadly, some parents only find out what was in the clinical record after their child has died. Of course, if there is any suspicion of child abuse, subsection (2)(b) would not apply, as it would be outwith the “reasonable steps” criterion.

Where another clinician from a reputable centre is suggesting a treatment, they should be asked to explain it, and the evidence base behind the suggestion, to avoid distortion of messaging—hence, subsection (2)(d) of the amendment. Clinicians, in explaining why they oppose a proposal, need to be able to explain to the parents what the “significant harm” in the proposal is. When taking any clinical decision, harms and burdens are weighed up against potential benefit. If a child is going to be taken into care, the test is whether it is of “significant harm” to leave the child where they are, rather than be taken into care. In some ways, this is similar, because the clinicians are being asked to show that it is significantly harmful for the child to pursue the parents’ proposal, rather than continuing with the current management plan—when it often involves withdrawing treatment and is likely to lead to death.

Some hospitals have excellent ethics committees to involve early. The Nuffield Council report recognises that there are very real difficulties in the concept of best interest when deciding not to treat, as it is often not clear to the parents why abandoning the hope of improvement is in the interests of the child. In an overcrowded NHS, unconscious bias can skew towards wanting a service to clear beds, when prognosis looks poor. However, parents know that the child has no interests once they are dead. Nuffield recommends that the views of parents should be accorded considerable weight in decisions about their child.

When the two parties are unable to resolve their difference of opinion, such a case would now go to the court immediately. This amendment suggests that a

“mediation process, acceptable to both parties”

should be allowed when, and only when, earlier attempts at resolution have failed, as in subsection (2)(e). A mediation process would be between the parents and the senior doctor with overall clinical responsibility. It cannot be delegated to a junior in training or to one of the nurses on the ward. If mediation fails, then, as now, the case would proceed to court. The amendment is clear that no doctor or institution would be required to provide a treatment which they do not feel comfortable giving. This is the current law. The amendment is also clear that the overriding principle is the principle, as laid out in current law, of the

“best interests of the child”

being paramount. If the child is Gillick-competent, such an amendment would not apply.

Similarly, the views of others, such as a social worker or health visitor who knows the family may provide important information. As is the case now, that information must be listened to, as it may relate to some safeguarding issues or other information unknown to either the clinical team or the court. The early steps outlined in this amendment should improve the quality of communication between parents and the medical team, thereby decreasing the need to go to mediation. The mediation process is to try to decrease the number of cases going to court. I beg to move.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite the noble Baroness to speak.

[Baroness Brinton (LD) [V]]

My Lords, I have put my name to Amendment 172. I thank the noble Baroness, Lady Finlay of Llandaff, for tabling this improved amendment, with important changes since Committee, as she has very helpfully explained to your Lordships’ House. I believe that this helps to find a way to balance the views of the child’s parents and the child’s doctors, and it is reassuring that many of the stakeholders from different perspectives have come to agreement on this.

The amendment also makes it clear that nothing affects the principle of the best interests of the child. This means that no medical professional could ever be forced to provide a medical treatment that they do not believe is in the best interests of the child, and that any other provider of such medical treatment would have to provide evidence during the mediation that this would benefit the child.

Another key reason for the need for this amendment is that at the moment mediation provision across England is inconsistent. While there is certainly excellence, there are also some problem areas. Having in legislation an independent mediation process made available at the earliest stage possible can help facilitate less confrontational conversations while supporting both sides in the argument.

The issue of parent-doctor conflicts will continue to persist frequently unless the Government can consider this amendment, and I strongly urge them to do so. If the noble Baroness, Lady Finlay, were to call a Division, we would support her on this, but I hope that the Minister will be able to provide some positive news.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

My Lords, the noble Baroness, Lady Masham, is also taking part remotely. I invite the noble Baroness to speak.

[Baroness Masham of Ilton (CB) [V]]

My Lords, I have my name to Amendment 172, and I congratulate my noble friend Lady Finlay of Llandaff on her persistence on this important matter of mediation. It is a proven way of dismantling conflicts before they reach the courts.

Over the years, there have been some tragic cases when relationships have broken down between doctors and family members. When this happens in a hospital environment, parents can feel backed into a corner, with no alternatives. Mediation gives the opportunity for the parents to give their views and to hear the doctors’ views too at the earliest stage.

Ending up in the courts costs parents, hospitals and the Government hundreds of thousands in legal fees and causes avoidable distress and concern to all those involved. The only people who win are the lawyers. Parents have to live with grief and the decisions which have been made for their child for the rest of their lives if the results are not good. They want to know that they tried everything possible to give their child the best chance.

I feel that there should be adequate training for doctors, nurses and social workers in the values of mediation so that there is a team approach to treating a child in a life-and-death situation. I hope the Minister understands the need for this amendment and will accept it.

--- Later in debate ---

[Lord Campbell-Savours (Lab) [V]]

My Lords, this is an important amendment. To me, it is the most important in the Bill. It concerns preservation of life in conditions of general pandemics. If you leave worldwide vaccine manufacturing programmes to the free market, you will never fully deliver. Profit will always trump the public good, unless the state intervenes in some regulatory form or another. This is basically why I am a Labour person.

With that in mind, it is clear that the more we are told that the current arrangements for licensing and manufacturing are necessary for reasons of quality control, the more I am convinced that this is not the only consideration in mind. There are other considerations—primarily the need to maximise profit. There is nothing wrong with profit if the justification is reasonable. It drives initiative and entrepreneurship. However, when there are wider issues involved, as in the case of a global pandemic which threatens the well-being of nations and the international economy, there must be a consideration of the wider public good and benefit. I am not convinced that, apart from the case of the AstraZeneca project, public benefit has been the driver.

In Committee, I set out in some detail a case wider than this amendment for worldwide licensing arrangements based on the original amendment of my noble friend Lady Chakrabarti. I remain confused by the Government’s position, which seems ever reliant on research and limited production at home, with volume production overseas. I would have thought that there are lessons to be learned about supply volatility from the case of oil from Russia. Equally, with both China and India leading the world in vaccine supply—at the same time as both countries remain reluctant to support us over certain areas of dispute and crisis in foreign policy—alarm bells should be ringing. I remain of the view that we in the United Kingdom should lead the world in this area of research, development, manufacturing, licensing and supply.

We are moving into an era of further pandemics as research-spawned accidental releases inevitably will reoccur, or perhaps they will not even be accidental in origin. There are huge foreign policy benefits to be gained arising out of being the world’s primary producer and licensee of these vaccines. When you help people, they remain indebted. That is the approach China is taking in many areas of its foreign policy.

I will give an example. The French Government funded my higher education in France 60 years ago. To this day, I remain indebted to France, with a lifetime feeling of obligation. This is often the case for foreign students. I believe that if we had been suppliers and licensees to the world over the recent period, in particular Africa and the third world, the payback would have been immeasurable, with huge implications for foreign policy.

I will exaggerate to make my case: suppose we had been supplier and licensee to China. Can noble Lords imagine what influence such beneficence would have had on Chinese public opinion and, perhaps ultimately, on Chinese foreign policy? A friend in need is a friend indeed—we should never forget that.

I appeal to the Government, even at this late stage in the current pandemic, to think long term, and create the vaccine supply, manufacturing and licensing programme that my noble friend Lady Chakrabarti is advocating. Her amendment seeks at least a temporary, time-agreed waiver. It is a start. I am using her amendment to argue a wider case, a new vision. Her excellent amendment puts in place a building block on which a longer-term strategy should be constructed. We should lead by helping others to help themselves. The rewards are inestimable.

[Lord Russell of Liverpool (CB)]

My Lords, I was happy to add my name to this amendment to give it a bit of cross-House balance. Like the noble Baroness, Lady Brinton, I am an officer of the all-party parliamentary group on coronavirus. In the last two years, we have had a bellyful of coronavirus; we have heard ad nauseum about the problems and the tragedies that it has created and encompassed, and that is partly what leads to this amendment.

It is self-evident that the United Kingdom, and most of the rest of the world, was unprepared. Countries that had experienced SARS, particularly in south-east Asia, had a better idea of what they were getting into. Frankly, however, for most of us in the West, it was the blind leading the blind. Looking in the mirror today—and accepting our failings, and the unease that we in the developed world should surely feel for largely having prioritised looking after our own—is for me, certainly, distinctly uncomfortable.

The aim of Amendment 174 is very simple: equitable access to affordable health technologies for all. One of the biggest challenges is how to deal with the exclusive intellectual property rights that exist in the healthcare sector. Only 7% of people in low-income countries have been double vaccinated. Only an additional 14% have had one dose.

Noble Lords should remember where the variants have come from. The exception, of course, is alpha, for which global Britain is responsible, so that is something that we can be proud of. Beta came from South Africa, gamma from Brazil, delta from India, and omicron is truly global because it started in about 10 countries simultaneously. The two countries that went it alone, rather proudly, in developing their own vaccines—China and Russia—have produced manifestly inferior vaccines, which have not been subject to proper, clinical peer scrutiny.

I give two examples of the problem we face. First, Pfizer’s new antiviral treatment excludes most Latin American countries, and generic versions—unless Pfizer does something about relaxing its intellectual property—may not be available in those countries until after 2041. Secondly, Tocilizumab, an antiviral manufactured by Roche, which is based on UK government-funded research, is unable to be manufactured in countries with established production capacity because Roche is enforcing its patents in these countries. There is a global shortage of this particular treatment.

Tackling the complex world of healthcare intellectual property is not easy. In my past career as a headhunter, I worked with clients that were large, complex, well-funded, international pharmaceutical companies, so I know full well the level of intellect and resource that they put into their intellectual property defences. We must apply ourselves in a disciplined and determined way at an international level; this is a chance for Great Britain to prove that it is indeed global. As an aside, during Oral Questions this morning, some of us on the Cross Benches were playing a game where, every time somebody from the Government Front Bench mentioned global Britain, another notional £10 clinked into the pockets of the Cross-Bench Christmas drinks fund; this afternoon, we had a particularly fruitful Oral Questions. As a mantra, it is meaningless unless it has real content behind it.

We need to develop a rapid response plan for the next pandemic. We will demonstrate that we have intellectual and moral myopia if we fail to do it. In a nod to Amendment 170, which we debated earlier, we should not show that we are content to let the less-developed world suffer from what I would describe as unassisted dying. That is unacceptable.

[Baroness Bennett of Manor Castle (GP)]

My Lords, I rise briefly to offer Green support for this amendment, which I would have signed had there been space.

The noble Baroness, Lady Chakrabarti, referred to today’s report that a watered-down version of the India-South Africa proposal for a TRIPS waiver looks likely to go through the WTO. I quote Max Lawson, co-chair of the People’s Vaccine Alliance:

“After almost 18 months of stalling and millions of deaths, the EU has climbed down and finally admitted that intellectual property rules and pharmaceutical monopolies are a barrier to vaccinating the world.”


Bouncing off the comments of the noble Lord, Lord Russell, I think that the Cross Benches might find an even larger drinks fund if they go for “world-leading” as the key phrase to identify. The comment from Mr Lawson shows that, collectively, the world has done very badly throughout the Covid pandemic and done very poorly by the global south. If the Government want to be world-leading, they could leap in right now and accept the noble Baroness’s amendment.

Health and Care Bill

Lord Russell of Liverpool Excerpts

Committee stage
Thursday 20th January 2022 Lords Chamber

[Baroness McIntosh of Pickering (Con)]

My Lords, I will speak particularly to Amendments 54, 74 and 97 in this group. I warmly thank the noble Lords, Lord Patel and Lord Hunt, for lending their support to all three amendments, and the noble Lord, Lord Warner, for supporting Amendment 74. I pay particular tribute to the noble Lord, Lord Patel, and his historic work prior to the setting up of NICE; it was a great contribution that deserves to be recognised.

We are all aware of the procedure that, when a medicine is approved, it goes through two processes. First, it goes to the Medicines and Healthcare products Regulatory Agency, known as the MHRA, a body which checks whether a drug is safe and effectively does what it says on the tin. It then goes through a separate process run by the National Institute for Health and Care Excellence, known as NICE, which looks at cost-effectiveness and value for money. After those two hurdles have been passed, the medicines should, theoretically, be accessible to anyone. That is very clear in the NHS constitution, which explains that there is a legal right for people to have access to NHS NICE-approved drugs if it is right in their particular circumstances that they should. Indeed, the NICE guidelines say very clearly that there should be automatic adoption within 90 days of approval, if clinically appropriate and relevant.

For a drug then to be prescribed, it must not only have been approved by NICE but go on to the approved list of drugs in the local health authorities, called a formulary. The problem is that somebody must put the drug on the formulary and, currently, while in theory there is a system under the NHS NICE guidelines, this does not actually happen. Sadly, this results in a postcode lottery where some areas have the product on their formulary and others do not. Sometimes this is a process failure, but sometimes it is to avoid budget overspends. Therefore, I would say that it is at the patient’s expense that they are deprived of the drug.

To give an example of the problem, there is currently a drug for multiple sclerosis that patients are still waiting after 150 days to see go on to the formularies in around 25% of the local health systems across the country. There is a state-of-the-art flash monitor for type 1 diabetes, but the uptake across the country varies between 16% and 65%. What is most worrying is that those parts of the country with the greatest levels of deprivation have the lowest level of uptake.

I make a plea to the Minister: in my view, ICBs should be required to ensure that all NICE-approved medicines and devices are available and promoted to their population, because the cost of these drugs is covered by the VPAS reimbursement scheme agreed between the NHS and the pharmaceutical industry. If a treatment is unavailable in one ICB footprint, they should be required to commission the required treatment from another ICB. The Government should also promote uptake through the ICBs of NICE-approved medicines and report uptake of new medicines annually.

Amendment 54 would require an ICB to arrange for provision of a NICE-approved treatment to any patient whose NHS clinician has recommended it, even if that treatment is not otherwise available to patients in that ICB area. Amendment 74 would require ICBs to ensure that all NICE approvals are available and promoted to their population via a publicly accessible format, normally online, and to report on their uptake annually. Amendment 97 would mandate integrated care boards and healthcare providers, notably hospital trusts, to update their formularies to include all NICE-approved medicines or devices within 28 days of market authorisation, to ensure they are available for healthcare practitioners, through either their physician, for example, or prescribing pharmacist, to make available for suitable patients.

I thank those who submitted briefings to me while I was preparing for today, notably JDRF, which makes a number of recommendations on this issue, particularly in regard to type 1 diabetes. These aim to reduce inequalities, remove the postcode lotteries to which I referred and make sure that treatments, such as those for type 1 diabetes, are uniformly available across the piece. I also thank EMIG, a pharmaceutical trade association for small and medium-sized companies, for its briefing. It says that the uptake of NICE-approved medicines is critical for NHS patients to benefit from the latest and most promising innovations. Finally, I am grateful to Vertex Pharmaceuticals, which submitted a briefing that again supports the conclusions reached. Among the proposals it highlights is the introduction of a modifier to take account of the severity of a disease and efforts to more fairly consider uncertainty in the evidence for highly innovative and complex treatments for rare and severe diseases, including through greater use of real-world evidence.

On this small group of amendments, I look forward to hearing what the noble Baroness, Lady Finlay, has to say in connection with her neat, simple amendment, which would strengthen what we are proposing to do here. I urge the Minister and the department to address these postcode lotteries and make sure that NICE does not just make the guidelines but ensures that treatments reach the formularies and ultimately the patient in question. I beg to move.

[The Deputy Chairman of Committees (Lord Russell of Liverpool) (CB)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite her to speak now.

[Baroness Brinton (LD) [V]]

My Lords, I wish to speak in support of Amendments 54, 74 and 97, tabled by the noble Baroness, Lady McIntosh, and Amendment 163, tabled by the noble Baroness, Lady Finlay. I too pay tribute to the historic work of the noble Lord, Lord Patel, prior to the setting up of NICE.

While it is not an interest in the formal sense, I declare that I have autoimmune disease and have experience of being on the NICE rheumatoid arthritis care and treatment pathway for 19 years, which has been regularly updated by NICE over that time. Where it has been applied in full and from diagnosis, patients have found it very beneficial and, with new and more effective drugs being approved every few years, many are now in remission. I pay tribute to the consultants trying to do their best for their patients and the National Rheumatoid Arthritis Society and Versus Arthritis helplines which support RA patients in navigating their way through access to their NICE treatments when these have been blocked.

I thank the noble Baroness, Lady McIntosh, for her introduction to this group and for explaining the problem with the formulary list. She is right that this should be addressed formally. However, I want to focus on some of the commissioning practices on NICE-recommended treatments, including those on the formulary, in the current CCGs, because I believe these explain the need for the amendments in this group.

In May 2014, the High Court ruled that Thanet CCG could not disagree with NICE guidance merely because it disagreed with it, even when there is no statutory duty to provide that treatment. This specific case was about access to fertility treatments for a woman who was about to undergo bone marrow transplantation to put her severe form of Crohn’s disease into remission. NICE’s 2013 clinical guidance recommended that

“oocyte or embryo cryopreservation as appropriate”

should be offered

“to women of reproductive age … who are preparing for medical treatment for cancer that is likely to make them infertile”.

This was not cancer, and the CCG’s own policy was to not grant funding unless there were exceptional circumstances.

Covid-19

Lord Russell of Liverpool Excerpts

Wednesday 26th May 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, the noble Lord points out an extremely challenging situation, particularly in Nepal, but, frankly, all around the world there is a global pressure on the supply of the vaccine. Britain has contributed enormously to that through COVAX, our financial support and the AstraZeneca vaccine, whereby nearly half a billion vaccines worldwide have been run through the profit-free AstraZeneca process. However, we are aware of the situation in Nepal. My noble friend Lord Lancaster spoke movingly in his debate on the matter in this Chamber and we take note of the particular needs of that country.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

My Lords, the time allowed for this Question has elapsed.

COVID-19 Variant: Travel Guidance for Local Authorities

Lord Russell of Liverpool Excerpts

Wednesday 26th May 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, I did read that book, and it was based on the premise that the public cannot be trusted and the public cannot make decisions for themselves. That is not the Government’s view.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

My Lords, all supplementary questions have been asked.

Covid-19: One Year Report

Lord Russell of Liverpool Excerpts

Thursday 25th March 2021 Lords Chamber

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

My Lords, the debate will now continue. My apologies for the system going down. I call the Minister to continue his speech.

Health Protection (Coronavirus, International Travel) (England) (Amendment) (No. 7) Regulations 2021

Lord Russell of Liverpool Excerpts

Monday 22nd March 2021 Lords Chamber

[Baroness Ritchie of Downpatrick (Non-Afl) [V]]

My Lords, I congratulate the noble Baroness, Lady Chapman, on her maiden speech. We worked together in the other place when we were Members there, so I look forward to working with her in this House.

I support the Motion in the name of the noble Baroness, Lady Thornton. The regulations should have been laid earlier, despite the warning from the Scientific Advisory Group for Emergencies on 21 January that:

“Reactive, geographically targeted travel bans cannot be relied upon to stop importation of new variants”


of Covid-19. Why was this the case? Why are we dealing with this legislation in retrospect? In fact, the noble Lord, Lord Hunt, has referred to the subsequent regulations, which we will no doubt debate in future weeks.

There is a view that the Government failed to prevent the Brazilian strain of Covid-19 entering the UK, that the policy applies only to the 33 red-list countries and that 99% of passengers arriving in the UK are therefore exempt. So, could the Minister indicate what action the Government will take to ensure comprehensive hotel quarantine for all UK arrivals in order to prevent the importation of new variants of Covid-19? Is there not an onus of legal responsibility on the Government to ensure the public health protection of all our citizens? In asking that question, I do commend the Government on the rollout of the vaccination programme.

There is also a view that under these new regulations, a passenger could avoid their managed quarantine by separating the legs of their journey. Is there not a case for the Government to review their hotel quarantine policy to make it fit for purpose?

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

The noble Lord, Lord Randall of Uxbridge, has withdrawn, so I call the noble Lord, Lord Bhatia.

--- Later in debate ---

[Baroness Scott of Needham Market (LD) [V]]

My Lords, the noble Baroness, Lady Thornton, has already mentioned the Joint Committee on Statutory Instruments. I have served on that committee for about two years now. It is one of the less well-known workhorses of the parliamentary scrutiny system. It is very technical in nature and staffed by a very effective and thorough legal team. It is always a busy committee but recent years have been particularly active, with the continued volume of EU exit SIs and those, such as the measure today, relating to the pandemic. When you strip away all the legal technicalities, at root the committee is concerned to see that the law is correctly applied and that agreed parliamentary procedure is adhered to.

This SI and others like it are a very good example of the kind of issues that the committee highlights because it is rather exercised by them. In this case, “variant of concern” and “variant under investigation” are used but with no definition or meaning. The department has said that they do not need to be defined here because they have a commonly understood meaning in the scientific and health community. In practice, that may be true but there is an important point here: the law should be unambiguous and understandable to everyone. There are other examples where the department has included a definition, so it is not even being consistent.

Secondly, without going into the detail of our report there are drafting errors, which the department acknowledges. Three of them have had to be corrected by a subsequent instrument and the fourth, it says, will be. This is not a criticism of the department—drafting at pace is challenging—but it highlights how hard it is to keep track of exactly what Parliament is passing.

The committee has concerns about many trends and will shortly produce a special report which highlights them. The conflation of statute and guidance has exercised the committee and other noble Lords. This, compounded with the practice of government announcements and their attendant publicity, followed by regulation that does not match, is a major concern.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

The noble Lord, Lord Desai, has withdrawn so I call the next speaker: the noble Lord, Lord Naseby.

--- Later in debate ---

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

We will move straight on to the next business, with a few minutes’ break to allow people to leave and arrive.

Covid-19 Update

Lord Russell of Liverpool Excerpts

Thursday 4th February 2021 Lords Chamber

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

My Lords, I am enormously grateful to both the noble Baronesses for their thoughtful and provocative questions. I join the noble Baroness, Lady Thornton, in paying tribute to Captain Sir Tom Moore. His story touched on something we have talked about in this Chamber this year: the way in which someone, in their 99th year, can make a tremendous impact on the whole country, bringing us together and raising money for NHS staff. It was an amazing achievement so late in life. It demonstrates that every year of every life, however late in that life it is, is valuable. That is why this Government are extremely proud of the measures that we have put in place to protect the lives of, and avoid severe harm to, the elderly and infirm.

I also share in the noble Baroness’s tribute to NHS staff and the vaccination rollout. She is entirely right; there is huge mental and social attrition across the NHS at the moment. The hard work that goes on, particularly in intensive care, is having a tough impact on those who work there. We hear of the need for some form of respite for NHS staff, loud and clear, but I have to be candid: when we are done dealing with the hospitalisations for Covid, there will be a massive wall of work to manage the huge backlog and restart business as usual. We are looking at the human investment needed. I pay tribute to my colleague Helen Whately, the Minister who covers the NHS workforce. She speaks to the NHS and social care workforce daily. We are looking extremely carefully at the investment that will be needed to support healthcare staff in the difficult year ahead.

The noble Baroness, Lady Thornton, asked about those who refuse the vaccine. I am afraid that those statistics do not exist, because people do not identify themselves as vaccine refusers. However, the overall picture is extremely positive at the moment. Those in categories 1 to 4 are stepping forward for the vaccine in tremendous numbers, and we are extremely encouraged by that. I take on board the insight of Tim Spector and others who have spoken thoughtfully about the barriers. I pay tribute to civic and particularly religious groups, which have often put vaccination sites in their temples, synagogues, churches and other religious settings. That is exactly the kind of trusted civic engagement that has led to vaccine deployment reaching deeply into communities that might otherwise have been worried or suspicious.

The challenge that we will face will be when we turn our attention to the younger. To answer the other question from the noble Baroness, Lady Thornton, we will be rolling out the vaccine to all age groups. The very good news from AstraZeneca about the vaccine being an extremely effective agent against transmissibility is exactly what we need to know, because it gives a green light to using the vaccine to avoid not just severe illness, hospitalisation and death, but transmissibility. We have to get the message across to those whose lives are not necessarily saved by the vaccine—it saves someone else’s life—that taking it is important and something they should feel trusting about and obligated to do. That will be the second phase of the vaccine rollout, and we are thinking carefully about how to do it as effectively as possible.

The noble Baroness, Lady Thornton, alluded to staff vaccination. She is entirely right about the very high number of Covid deaths in homes at the moment, and I reassure her that vaccines have been offered to every person in every home. There is an email address, which I would be happy to share with all noble Lords, for anyone who thinks that they have not been offered the vaccine. There is an absolute backstop for anyone who thinks that they have been overlooked or have missed out. We are doing our level best with an effective deployment and rollout programme to ensure that all social care homes, whatever their status, and all staff in them are protected by the vaccine.

I will say a word about schools and teachers. I completely support the views of the noble Baroness, Lady Thornton, and many other Peers who have spoken thoughtfully and emotionally about the importance of getting schools back. The Government and I agree that this is our priority. I spoke to the Schools Minister, Nick Gibb, about this yesterday. I pay tribute to the work of the Department for Education in rolling out testing in schools. Either today or very soon, we will have had the millionth test in schools, which is a great tribute to the work that schools, teachers and the DfE have done on asymptomatic testing in schools. It is an important way to cut the chain of transmission and to protect all those in schools, from both the disease and being agents of transmission to those who are more vulnerable. I support all the measures on social distancing, PPE and testing that we can put in place to keep schools open.

When it comes to vaccinating teachers, I emphasise that saving lives and avoiding severe harm is the priority for the vaccination programme. While we are sympathetic to teachers and will definitely have them on the prioritisation list, the protection from harm and death is our current priority.

We take the news on mutations from South Africa, Brazil, California, Kent and Bristol, and all the other manifestations of mutations, extremely seriously. The noble Baroness, Lady Harding, spoke about not expecting a mutation, but of course it was not the virus mutating that was not expected—that is commonplace. The CMO spoke about that impactfully and early, in February and March; he utterly predicted that mutations would lead to a second wave. But the virus had not mutated much last year. In fact, it was a phenomenally rigid and consistent virus for a long time. What was not easy to predict was that a highly transmissible disease would emerge that completely outperforms its previous classic manifestation. We saw that only when the infection rates started to climb extremely quickly. We changed our tack accordingly, and we continue to change our tack.

As I have said from the Dispatch Box previously, we are in a different game now. Previously, the focus was on keeping a lid on infection rates and getting the prevalence levels low. That remains an important feature of our battle against Covid. On the other hand, we have to protect the vaccine. We are aware of the potential for a mutation to emerge that escapes the vaccine. That has been seen in other diseases and could be seen in this disease. That is why we have mobilised Operation Eagle to track down the South African variants that have landed in the UK, where we do not have a clear chain of transmission. That is why we are going door to door, offering PCR testing to all those—around 10,000 people—in each of the relevant postcodes, to put a lid on any community transmission. That is why we have deployed a special team, tracing variants of concern, which is tracking down the origins of each infection to stamp out and suppress variants of concern, where they emerge.

This is exactly the kind of capability that we need to put in place should a highly transmissible vaccine-escaping variant manifest itself. I pay tribute to those in test and trace who have put together this capability extremely quickly and are implementing it so thoroughly.

Both the noble Baronesses, Lady Thornton and Lady Brinton, alluded to the important issue of isolating. I hear those points loud and clear. We support those who are isolating, and make a £500 payment to those on benefits, who need it. Charities and local authorities support those who isolate. But I hear the point made about additional measures, and we are looking at further ways to support those who are required to isolate, either because they are infected themselves or because they are the contact of someone who is infected.

The noble Baroness, Lady Brinton, spoke thoughtfully and movingly about the role of the Lord Speaker in fighting HIV and AIDS, and I join her in paying tribute to the Lord Speaker, whose 83rd birthday was earlier this week. The messaging in that campaign was poignant, it cut through and we all remember it very well.

I also pay tribute to those in the communications team who have, during the last year, put through some incredibly impactful campaigning around the Covid messages. There has been massive societal behavioural change because of the clarity and the impact of the campaigns that we have done. Those campaigns have got better and better, and the most recent “look into my eyes” campaign, as it is now called, is one of the most impactful. When we look back on this campaign, we will think very highly of the marketing and communication skills of those in the Department of Health, the Cabinet Office and other departments, who have worked so hard in this area.

The noble Baroness, Lady Brinton, alluded to the vaccination of social care staff. She is absolutely right to allude to lists. One of the current difficulties is that we do not have proper lists of all those who work in various roles in social care, either as domiciliary staff or in unpaid roles. My colleagues are looking at this, and we are moving quickly to address it. I know that the noble Baroness feels very strongly about the vaccine dashboard; I have taken it back to the department and spoken to the vaccine team about it and I will raise the matter with them again. Regarding the unpaid carers and the delivery plan, I will take that to the department again. I will be happy to write to the noble Baroness.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

We now come to the 30 minutes allocated for Back-Bench questions. I ask that questions and answers be brief, so that I can call the maximum number of speakers.

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[Lord Bethell (Con)]

My Lords, the noble Baroness is right, and I am grateful to her for giving me sight of her question in advance. Her point is completely valid and I support her interest in this. The JCVI has made it plain what the initial rollout of priority groups 1 to 4 will be, but there is a mechanism whereby it reviews and reassesses the rollout of further priority groups. That will be the moment when it can look at the kind of questions she raises about groups, such as those with learning difficulties, who have a high rate of mortality. I can reassure her that it is conducting a rolling review of the rollout of the vaccination and will take these matters into account.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

Since the noble Baroness, Lady Jolly, has withdrawn her name, I call the noble Baroness, Lady Watkins of Tavistock.

[Baroness Watkins of Tavistock (CB) [V]]

My Lords, I ask the Minister about British citizens working overseas. I declare an interest in that my son is in this category. We have done such a fantastic job here on the vaccines to date, but there are many British citizens working abroad in a volunteer, business or diplomatic role. They recognise the need for quarantine and the need for vaccinations to enable them to work between their UK base and their overseas commitments. How best can the Government include those UK citizens in our vaccination programme—clearly, not giving them priority but to ensure that we protect their health, as well as that of people living in Britain at the moment?

Mental Health Act Reform

Lord Russell of Liverpool Excerpts

Monday 18th January 2021 Lords Chamber

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

My Lords, I thank both noble Baronesses for their incredibly perceptive, thoughtful and detailed questions, some of which I am afraid are beyond the brief in front of me. I reassure them, particularly the noble Baroness, Lady Tyler, that I will write with detailed answers to some of their more perceptive and searching questions.

We are all enormously grateful to Sir Simon Wessely for his thoughtful, persuasive and thorough report. It has taken some time to work on it, but now that it has arrived we will act on it. I reassure the House that it is an enormous priority.

I reassure both noble Baronesses that funding is absolutely in place for mental health. If I may briefly run through that, an extra £2.3 billion a year for mental health services is committed by 2023-24. Some £500 million in mental health investment in the NHS workforce was announced in the spending review, and it will go towards addressing waiting times for mental health services.

The noble Baroness, Lady Tyler, referred to the challenge of recruiting psychiatrists. As she knows, that area is extremely challenging. The employment brand of mental health services is not as strong as it is for, say, surgeons, but we have done an enormous amount through HR and the people plan to find new ways of attracting people to rewarding and challenging roles in psychiatry, and those investments are beginning to pay off.

We have invested more than £10 million this year in supporting national and local mental health charities to continue their vital work in supporting people across the country. I will move on to the mental health effects of the pandemic in a second. We have invested £8 million in the Wellbeing for Education Return programme, which will provide schools and colleges all over England with the knowledge and resources to support children and young people, teachers and parents. We have announced more than £400 million over the next four years to refurbish mental health facilities to get rid of dormitories in such facilities across 40 trusts.

The noble Baroness, Lady Tyler, asked me about urgency and whether the Government were truly committed to moving quickly. I reassure her that money has already been announced and plans are in place to address some of Sir Simon’s most urgent recommendations.

Both noble Baronesses asked about the timetable for legislation. I reassure them that the consultation began last Wednesday; it is a 14-week consultation and we have committed to responding to it this year. If I may advertise to noble Lords, this is a terrific opportunity for all those with views on mental health to contribute to that important engagement. It is our plan to publish the Bill next year on the back of that consultation and for legislative scrutiny to take place next year. The question of whether that will be joint legislative scrutiny is not clear to me right now, but I undertake to both noble Baronesses to inquire and press the case for joint scrutiny when I return to the department. I shall write to both of them accordingly.

The noble Baroness, Lady Thornton, raised the impact of the racial dimension highlighted in the report. The numbers in Sir Simon’s report are incredibly striking and it is crystal clear that this is an issue that we absolutely have to deal with. Will we go far enough? Yes, indeed we will. The framework recommended is extremely powerful and we are already putting it into place. We have learned an enormous amount from the report. The ability for those with mental health issues to nominate their own advocate is an extremely powerful innovation that I think will have a big impact on this issue, but we still have further to go. We are engaged with those who are both representative and expert in this area to ensure that we are challenged to go far enough.

Likewise, on learning difficulties and autism, noble Lords will remember that we have had powerful and moving debates in this Chamber in the last few months on that very issue. I reassure the noble Baroness, Lady Thornton, that we note Sir Simon’s recommendation in his report for a 28-day cap on the detention of those with learning difficulties and autism. It is just not good enough for those with learning difficulties and autism to be detained under a Mental Health Act restraint for an interminable period. That point is thoroughly recognised, and the report’s recommendations are extremely well made.

On the question of the pandemic, the noble Baroness, Lady Thornton, put it extremely well: there has been a shift in many people’s response to the pressures and the isolation of lockdown, from being stressed and anxious to having genuine clinical challenges. The full effects of that have not worked their way through the system so it is difficult to get a nuanced and complete view from the numbers today, but we are very much on the balls of our feet to understand and react to the pressures

If I may draw out one issue, young girls seem to be a demographic who have particularly felt the loneliness, anxiety and uncertainty around the pandemic and lockdown. We are particularly concerned to ensure that support goes to families and individuals who present clinical mental health issues as a result of the pandemic.

On the other, very detailed questions asked by the noble Baroness, Lady Tyler, I undertake to answer them in writing at the earliest possible opportunity.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

We now come to the 20 minutes allocated to Back-Bench questions. I ask that questions and answers be brief so that I can call the maximum number of the 15 remaining speakers on the list.

Medicines and Medical Devices Bill

Lord Russell of Liverpool Excerpts

Report stage & Report: 2nd sitting (Hansard) & Report: 2nd sitting (Hansard): House of Lords
Thursday 14th January 2021 Lords Chamber

19: Clause 7, page 5, line 8, at end insert—
“(4A) Nothing in this section authorises a disclosure of patient information without the consent of the individual to whom that information relates.”Member’s explanatory statement
This amendment and the amendment in the Minister’s name to add a definition of “patient information” to Clause 7 prevent Clause 7 authorising the disclosure of information from which patients can be identified without their consent.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

Does the noble Lord, Lord Clement-Jones, wish to move Amendment 20, as an amendment to Amendment 19?

[Lord Clement-Jones (LD) [V]]

[Inaudible]—very much about informed consent, but, nevertheless, I will not move the amendment.

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Amendment 25 agreed.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

Does the noble Lord, Lord Patel, wish to move Amendment 26?

[Lord Patel (CB) [V]]

No.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

Does the noble Baroness, Lady Thornton, wish to move Amendment 27?

[Baroness Thornton (Lab) [V]]

I thought these amendments were part of the group that was passed on Tuesday?

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[Baroness Thornton (Lab) [V]]

That is what I thought

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

I will go back to Amendment 26. Does the noble Lord, Lord Patel, wish to move Amendment 26?

[Lord Patel (CB) [V]]

I do not wish to move the amendment.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

Does the noble Baroness, Lady Thornton, wish to move that amendment?

[Baroness Thornton (Lab) [V]]

Yes.

Amendment 26

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[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

My Lords, I should inform the House that, if Amendment 45 is agreed to, I shall not be able to call Amendment 46 by reason of pre-emption, and that the debate on the group beginning with Amendment 46 will be postponed and take place on Amendment 66.

Amendments 42 to 45

Moved by

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Amendment 49 agreed.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

We now come to the group beginning with Amendment 50. I remind noble Lords that Members other than the mover and the Minister may speak only once and that short questions of elucidation are discouraged. Anyone wishing to press this or anything else in this group to a Division must make that clear in debate.

Amendment 50

Moved by

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Amendment 67 withdrawn.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

We now come to the group consisting of Amendment 68. I remind noble Lords that Members other than the mover and the Minister may speak only once and that short questions of elucidation are discouraged. Anyone wishing to press this amendment to a Division must make that clear in debate.

Amendment 68

Moved by