Covid-19
Baroness Finlay of Llandaff Excerpts(4 years ago)
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Lord Bethell
I entirely agree with the sentiments and intent of my noble friend’s point. It occurs to me that we should perhaps set up some kind of advertising or promotion of this. I will take that point back to the department.
Lord Balfe (Con)
In the Statement, the Minister referred to the need for people who have other medical needs to still contact their GP. In Cambridge, where I live, the opticians, chiropodists, dentists and surgeries are all closed, with different fierce notices on their doors. When the isolation requirements are lifted, could the Government make it a priority to get these vital medical services open again and get doctors back into surgeries, not at the end of the telephone? Perhaps we could at least teach them that Zoom exists.
Lord Bethell
I reassure my noble friend Lord Balfe that the amount of video treatment being given by doctors has gone through the roof. During this epidemic, we have seen the medical trade and patients embrace a huge amount of digital technology. We are working with the colleges to try to get all the services of the medical profession open at this time and the response has been largely positive.
Lord Dobbs (Con)
Minister, are prisoners in our prison system participating in the manufacture of PPE? Does the crisis not represent an opportunity for many prisoners to not only contribute but move towards some rehabilitation?
Lord Sheikh (Con)
My Lords, my noble friend the Minister referred to the fact that the number of deaths that have occurred as a result of coronavirus stand at 18,738. The BAME community represents about 14% of the UK population, but unfortunately accounts for about 35% of all coronavirus patients in intensive care. The number of people in the BAME community who have contracted coronavirus and died as result is disproportionately high.
My noble friend might perhaps recall that I talked about the burial of Muslims when the Coronavirus Bill was discussed in your Lordships’ House. The Muslim community has got together, and burials are taking place in very difficult circumstances. However, I have been told by leaders of the community that the availability of land for burials should be kept under review and that a system should be provided if the land issue becomes a major problem and burials cannot take place. Secondly, the Government should consider providing additional funds to local authorities, which are dealing with very difficult circumstances. They are stretched to the limit and need additional resources for burials and cremations. Will the Minister comment on those two points?
The Deputy Speaker
Minister, if you could be very brief, we might be able to fit in the noble and learned Lord, Lord Woolf.
Lord Bethell
I am very grateful for my noble friend’s helpful update, but I remind him that these arrangements are conducted by local authorities. The question that he asks is best answered by those local authorities.
Lord Bethell
I thank the noble and learned Lord. Will he please express my and the Government’s profound thanks to his secretary for their contribution? I hope it is proving to be rewarding to him or her personally and impactful to the causes in which he or she serves.
The Deputy Speaker
My Lords, the time allotted for the Statement is now up. I thank all noble Lords for being concise, in particular the Minister for his very concise answers.
Covid-19: Extent of Infection
Baroness Finlay of Llandaff Excerpts(4 years ago)
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Lord Bethell
My noble friend is entirely right. Fitness and the Covid epidemic are closely connected. The Secretary of State for Health has made it clear that a daily walk should be part of everyone’s lockdown arrangements and we are ambitious to make fitness and diet part of the agenda as we leave the Covid lockdown.
Baroness Finlay of Llandaff (CB)
I thank the Minister for being open to communicating with us during the period before Parliament resumed. What assessment have the Government made of combining repeat virus detection with those risk factors that the Intensive Care National Audit & Research Centre’s contemporaneous data has shown are associated with particularly poor outcomes—I refer particularly to high body mass index, indicating obesity—and how will this inform the lockdown exit strategy?
Lord Bethell
The noble Baroness speaks of anecdotes of which we are very aware. We are conscious of the stories coming particularly from America about a seeming correlation, if not a causation, between obesity and Covid mortality. Clinical trials and data on this are in short supply. The CMO has not made a declaration on it. But I share her instinct that there is a strong connection. As the noble Lord, Lord Moynihan, suggested, fitness and diet will be important parts of our post-lockdown experience.
Health Protection (Coronavirus) Regulations 2020
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Lord Campbell-Savours (Lab)
My Lords, as I understand it, this is the first opportunity that we have had, outside of UQs and Statements, to fully debate this whole issue. I want to speak at a little greater length on this matter because I think that we are entering a crisis which perhaps we have underestimated at this stage.
As I understand it, these regulations apply where the Secretary of State makes a declaration that the incidence or transmission of coronavirus constitutes a serious and imminent threat to public health, and that the incidence of coronavirus is at such a point that the measures outlined may reasonably be considered as an effective means of preventing the further transmission of coronavirus. I will argue in my contribution that, prior to the use of regulations, advice should be given in the form of information—far more information than is available at the moment to the public—to help individuals avoid contamination and infection.
Before I start, I need to declare an interest. Some years ago, I had surgery on my lung to remove a tumour, leaving me with half a lung and with COPD on the remaining two lobes. As a result, I have major breathing difficulties. I also want to make it clear that I am not speaking only on behalf of myself; I approach this whole debate as one among the many hundreds of thousands who are in the vulnerable group described as “persons with pre-existing conditions”. Before moving to the thrust of my case—on the provision of information, which is what I want to concentrate on—I want to make three points.
First, the use of the terms coronavirus and Covid-19 is unhelpful and confusing. We need single-term terminology in the public debate. Secondly, repeating the statement that masks are of little value and are no defence, which we hear repeatedly on television, is irresponsible. Masks protect others from infection by those who are unaware that they are carriers. If they are so ineffective, why are doctors, nurses, health assistants, virus-testing personnel, ambulancemen, laboratory assistants, research chemists, health professionals generally and even undertakers worldwide all wearing masks, as can be seen on every television screen in the country, every day and every night on every new bulletin?
Thirdly, I am curious about the statistics on mortality rates, particularly among the elderly. The way this debate is being presented, it is as if 1%, 2% or 3% of those who are stricken with this condition may die, but that confuses groups of people, including the elderly and the young. I understand that the real figure for people in the 70 to 80-plus age group is appropriately 15%, which is substantially more. We need clarification on that.
In my view, the public should ignore the advice on masks and follow the practice of health professionals. I understand that this mistaken advice is being given to avoid panic among the wider population. It will do the reverse, as such advice emphasises in the public mind the distinction between the no-panic case from government and the reality of the practice of healthcare professionals on the ground in the real world that they can see on television every evening.
I turn to the provision of information. The best way to secure public co-operation in the avoidance of infection is to provide authoritative information. That is the story behind the calls for freedom of information legislation in the late 1980s. I was at the heart of that debate in the Commons, and our mantra was “information influences conduct”. To avoid infection, we need information from authoritative sources that is regularly updated as more information is made available to government. When the public have confidence in the scale of transparency and the source of the information, individuals are more likely to act responsibly. Apart from providing information, the state can do only so much, as is the case with the National Health Service and local authorities. The less information it provides, the less it will influence conduct. The less it provides, the more the fake news merchants will dominate the debate and the more they will influence public reaction and conduct. Inadequate and confused messages from government will lead only to a mix of panic on one hand and resigned inertia on the other. We need more than “Wash your hands, cough and dispose and do not touch your face”. It is simply not enough. If you provide more information, the public will make far more realistic assessments of the actions that they need to take. The terms contain, delay, research and mitigate are important, but they are meaningless to Joe Public. In fact the public will not even know what they mean. As contain morphs into delay and further morphing goes on, the message will become even more confused and obscure. The public want authoritative messages and updated and detailed information on where the dangers lie, in particular to elderly groups.
I have spoken to a number of people in my former constituency over the past week, and I will now set out what I believe the public want to learn and know. These are questions being asked by the vulnerable groups; they want authoritative information and answers.
We are told that the research money has been increased to £40 million. Reuters put out a very interesting article the other day. It reported:
“A global coalition set up to fight epidemic diseases issued a call on Friday for $2 billion … to support the development of a vaccine against the new coronavirus that is causing COVID-19 infections around the world. Describing the outbreak as an ‘unprecedented threat in terms of its global impact’, the Coalition for Epidemic Preparedness Innovations (CEPI) said that while containment measures would help slow the spread, a vaccine was key to longer-term control … ‘It is critical that we ... invest in the development of a vaccine that will prevent people from getting sick.’ … But on Friday it said these funds would be fully allocated by the end of March. ‘Without immediate additional financial contributions the vaccine programs we have begun will not be able to progress and ultimately will not deliver the vaccines that the world needs’.”
Those were the comments of Mr Hatchett, CEPI’s chief executive. On Friday, the British Government announced another £20 million of additional funding. The total is now £40 million or £50 million; I am not absolutely sure about the final figure. The point is that the budget is insufficient. What pressure are we putting on other countries to contribute to this budget to make sure that it meets the demands of those people who believe that it is necessary if a vaccine can be found in the foreseeable future?
Further, is the virus affected by temperature? We read all sorts of things on the internet. If so, at what temperature is it destroyed? That is the first question on my list of questions about the detail.
Should a vulnerable, at-risk person use public transport, be it a train, Tube train or taxi? The public are asking these questions. Should the elderly be using these facilities?
Can the virus survive any of the following circumstances: a hot drink; water; fruit juice; milk; beer or wine; a drink with a high alcohol content; an ice cream; a burger; takeaway food; or a restaurant meal? In each case, what is the lifespan of the virus? Again, the public are asking these questions, each of which should be answered separately.
What general information do we have on the lifespan of the virus? Can a fish, bird, animal or any other species catch the virus? The internet is full of explanations from people who cannot be described as authoritative sources for this information. Of course, the reference behind that is to pets. To what extent can a pet potentially be dangerous?
Can disposable polyurethane gloves be reused following washing? If so, in what fluids? Tens of millions of them are being sold on the internet. The question is, will they be effective if they are used more than once in contaminated circumstances? Will they wash in hot water? I know that these questions may seem naive to some but they are the kind of questions being asked by the general public.
Can a pair of gloves, whether they be made of fabric, leather, plastic or another daily wear material, pass on the virus? If so, can the gloves be decontaminated and reused? Can a simple face mask made of plastic be used repeatedly? Can it be washed for reuse? Is there a difference in terms of efficacy between a single-fabric face mask and a filter mask? I have two such masks here. The question is, are they in any way of use in the circumstances I described at the beginning of my contribution?
What antiviral substances are effective in killing the virus? Also, what substances are ineffective? Is there a base alcohol requirement in any decontaminant? Can the virus survive on any of the following inanimate items and, if so, for how long? Again, we have seen material on the internet, but we have nothing authoritatively on whether and how long the virus can survive on: a light switch; a newspaper; a piece of correspondence; a letter; a fabric, such as clothing; furniture; metal items; glass; a milk bottle; a plastic container; a piece of china; cutlery; a coin; a bank note; plastic packaging on food; a cash machine; a computer; a mobile phone keypad; a handle; handles on public transport, such as on a Tube train; a handkerchief; a toilet seat; a toilet chain; a towel; or a petrol pump nozzle. There is no authoritative information on these items, and we are getting into a dangerous period.
I have listed some of the items that I have been asked about—and there are more. The public will want clear advice and individual answers that identify the likelihood of contamination for each listed item and, crucially, the length of time that the virus could survive under such inanimate item headings.
What advice can be given on the possible contamination of food, such as cold meat, cooked fish and poultry, raw meat and fish, fresh vegetables and salads, fruit, cheese, and spreads, including butter? It might be that the process of vacuum packing affects contamination one way or another—who knows?
Will the Government publish the stats on the age of persons, which I referred to before, who fall under the following categories: in hospital care and deceased—which I referred to before?
Finally, is Worldometer a good source of information? It seems to be the primary source for the public of information on this matter on the internet.
In conclusion, I fully understand that to some, many of my questions may appear to be simplistic, naive and an indicator of my own ignorance. Such criticism is of no concern to me. These questions will stand the test of time. There are 67 million people in the United Kingdom, and these are the kinds of questions many of them are already asking on the internet and in public meetings. We are Parliament and it is our role to secure answers on these from the Government. I do not expect answers to them today, but only after they have been fully considered. I hope that they are made public and are widely circulated to counter misinformation. I can only repeat that, when the public are told the full truth and given the full information in an authoritative form, they will respond positively and constructively. Until that happens, there will be nothing but panic, confusion, upset, frustration and, in some cases, dangerous indifference, particularly among the elderly and the vulnerable groups, who are the focus of my contribution today.
Baroness Finlay of Llandaff (CB)
My Lords, first, I apologise to the Committee that I came in late. The business proceeded slightly faster than I realised, but I am most grateful to noble Lords for allowing me to intervene briefly.
The comments made by the noble Lord, Lord Campbell-Savours, clearly illustrated the need for messaging out to the public. One of the difficulties is that the answers to many of his questions are just not known scientifically. It is a range of probabilities only; the way the virus behaves on different surfaces and with different substances is different. The infectivity may vary with the viral load to the individual as well as the individual’s own immune system. That makes it really complicated in terms of defining. You cannot give a false sense of security to people by saying, “Well, you are fit and well, and your immune system is okay”, because those people may become very ill, particularly if they have a large viral load. We saw that with the Chinese doctor who initially highlighted the problem. Tragically, he died.
I take this opportunity to ask a few questions. This order refers to Public Health England but we have devolved Administrations, and Public Health Wales and Public Health Scotland operate differently. Some aspects of this statutory instrument concern the police and justice, yet the Ministry of Justice and its overarching responsibilities are not devolved, so there is a difficult interface between the devolved and non-devolved competencies. Can the Minister provide some reassurance on the daily round-table consultations that are going on to make sure that decision-making is absolutely seamless and that the devolved Governments are taking forward—and, I hope, mirroring—such legislation so that we do not end up with different systems operating across what are effectively artificial borders? In areas such as Shropshire, there is a huge amount of cross-border flow between England and Wales. Linked to that, can the Minister clarify that equipment, and its distribution to where it is needed, is also part of the consideration of the protection of the public so that we do not have an outcry if one part of the country cannot access equipment as well as another?
Testing is difficult: it is a complex and finite resource, and it takes some hours to run the test. A lot of the public do not understand that it is not like a pregnancy test; it is not a quick dip and a quick answer. With such a finite resource, will the Minister clarify where the governance sits for the management of negative results? One of my anxieties is that people may have a false sense of security from a negative result, because they may get the infection the day after it and subsequently become positive. Although it is helpful to confirm positive cases, a negative result does not mean that you are not going to get the coronavirus infection further down the road.
Linked to the cross-border issues, can the Minister also confirm that the use of beds and the availability of things such as ITU beds and ECMO are being considered across the whole country? I worry that difficult decisions are going to have to be made and it will be very important to have clear standards against which to make them. If it looks as if we are becoming like Italy, that will certainly more than stretch services to the limit; it will take them beyond it.
Will we need additional statutory instruments for the reregistration of people with healthcare professional qualifications of any sort? If so, when will we see them? I was rather hoping that it might be today. This relates to my earlier question about registration on specialist registers. Is the GMC working to find alternative ways of putting those who have completed training on the specialist register without bringing them all together in an exam hall, which seems to be an unwise move when their competencies have already been assessed through training?
That concludes my questions, but I thank the Minister for his clarity, for explaining things really well, for answering questions on the Floor of the House and for answering unanswerable questions with such honesty. It is terribly important that he and those advising him try to be very clear and open about the things that we do not know.
Lord Bethell
My Lords, I will start by talking about two matters that are not central to the regulations but which are important pieces of context. I thank the noble Lord, Lord Campbell-Savours, for his incredibly candid and heartfelt comments, which none of us here could help but be moved by. I would also like to express sympathy for his personal situation. We all know friends, relatives and people who are in a vulnerable position. While the CMO’s advice is that for a lot of us the virus does not present a huge risk, for some people it does. That cannot but be on their mind and we think about them a lot, so I am grateful to the noble Lord for bringing that message of seriousness and his personal testimony.
I will also address directly the noble Lord’s questions. I am afraid that I cannot answer the important technical questions he asked; I am grateful for his appreciation of that fact. However, I reassure the Committee that our approach is to seek to be as transparent as we possibly can be. In answer to the noble Lord’s question, there is a daily update on the PHE website, where all the figures that we know and can prove are published—they go up at 1.45 pm every afternoon. That is a serious matter, and we are looking at ways of making that a more easily accessible dashboard with a deeper set of numbers that you can look at locally; we could then publish as reasonable and proportionate an amount of figures as possible while keeping secure the anonymity of those involved.
The other part of our approach comes very much from the spirit of the CMO himself, whom many of your Lordships will have met. He is an enlightened character who is extremely committed to evidence-based policy recommendations. We all plague him with questions much along the same lines as those the noble Lord, Lord Campbell-Savours, asked, seeking from him reassurances about particular technical questions. He is able to speculate and to say, “Maybe this or maybe that, but I can’t give you any clear reassurance on that because there is no data on it”.
One of the things about trying to preserve the pact with the public that our decision-making is supported by evidence is to avoid going into the kind of tempting speculation that the situation draws you into. There is temptation there, but, as a cardinal rule, we have to apply a self-restraining ordinance on trying to give people the answers and the speculation that, emotionally, they naturally want. The questions of the noble Lord, Lord Campbell-Savours, are exactly right, and I reassure him that battalions of scientists are trying to get to the bottom of those answers. Lots of evidence is being worked up, and I believe that answers to many of those questions will be forthcoming. However, until they have the sign-off from the scientists, it is not right for us to indulge in speculation. That is the foundation of our approach, which I mentioned earlier. Although it is incredibly frustrating, from a public policy point of view it is the right approach. However, I will try to address just a couple of the questions that the noble Lord asked, without falling into my self-defined bear trap.
The noble Lord, Lord Campbell-Savours, asked about masks. Broadly speaking, except for the most comprehensive hazmat suits that cover you from head to toe, masks are mainly used to limit the number of germs that you emit rather than that you consume. I think we are all interested in the work going on in Taiwan, where all schoolchildren wear masks, not to protect them from the germs but to try to stop them infecting the people next to them. That is an interesting insight, but it is not the approach that the CMO has recommended.
On the delicate issue of mortality rates, I completely sympathise with the noble Lord’s point that there is wild speculation on these numbers, and it would be fantastic to have a more reliable set of figures. I will say only that it is extremely difficult to know mortality rates, because you simply do not know how many people have the virus in the first place. Large numbers of people are infected and infectious but completely asymptomatic and never go near a test kit, so we cannot know what the mortality rate is at any age. I recommend that the noble Lord treats all mortality rates data with great suspicion. It is not the way we are guiding ourselves.
Lord Bethell
I understand the point and will take it back to the department.
The noble Baroness, Lady Finlay, asked about testing. She is entirely right to focus on that, because we are at the stage of the cycle when questions about testing are very much on our minds. She asked where we were focusing our testing. The most important area for testing is those people who are most vulnerable but who might have the virus. She is entirely right that someone who tests negative today may well test positive tomorrow. Where that is most dangerous is within hospitals. Hospitals are centres of infection. It is one reason why, if you phone 111, they recommend that you do not go to your hospital or your GP. Therefore, testing within hospitals is where we are focusing our resources.
I reassure the noble Baroness, Lady Finlay, that we are moving incredibly quickly to increase capacity of ECMO beds. There will be a huge amount of pressure —we cannot hide that—but those most in need are being prioritised. Training is going on to support those with the technical knowledge of how to run the equipment and purchasing is going on to create new kit.
On reregistration of clinical professionals, all the concerns raised in Committee and in the Chamber about the provenance of people seeking to reregister are fully understood. Provision is being made to make sure that criminal record checks and competence checks are in place. However, these remain incredibly valuable and skilled people who can support us, so we are determined to mobilise them if possible.
Baroness Finlay of Llandaff
I referred to difficult decisions possibly being made. Can the Minister reassure the Committee that the Government are working with the heads of all the royal colleges—particularly their ethics committees—to make sure that unified guidance is going out to commissions across all the disciplines? Unfortunately, the different colleges have at times a tendency to work in their own silo, but this will be across all of them. It will have to go across the professions, rather than across the individual trusts and internal organisations. Therefore, a round table or regular consultation with them to make sure they all give the same messages is important, and it would reassure the public.
Lord Bethell
The noble Baroness, Lady Finlay, makes an important point. The CMO currently has a weekly call with all the presidents or relevant members of the royal colleges, and there is an incredibly energetic interface between officials at PHE and the colleges. New guidance is being drafted at the moment. As our understanding of the epidemic increases so the CMO’s certainty and confidence about the advice he is giving will be clearer. We are therefore seeking to publish really good guidance for employers, voluntary organisations and all the groups who need it. The CMO also works closely with the CMOs of the other three nations, and I understand that is an incredibly healthy and productive relationship. It has served very well to ensure that the devolved authorities are fully involved in decision-making and that there is transparency on key issues such as ethics, which the noble Baroness was right to mention.
Coronavirus
Baroness Finlay of Llandaff Excerpts(4 years, 2 months ago)
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Lord Bethell
The noble Lord is entirely right. The CMO’s effort is now to identify those groups who require the greatest priority of assistance. We are not sure, and the CMO has not declared, at exactly what age that should start. He is considering publication of the exact details of the priorities in future. It seems that it is not necessarily gender-specific but that the state of your immune system is the key driver. In some areas, of course, men have very bad habits when it comes to things such as drinking and smoking. The CMO has made it clear that if you want to do one thing to avoid getting the virus, it is giving up smoking.
Baroness Finlay of Llandaff (CB)
Will the Government give specific guidance on deferring or cancelling gatherings of clinicians and other healthcare professionals at conferences and examinations required for career progression, and specifically ask the regulators to allow alternative routes of registration and validation?
Lord Bethell
The noble Baroness asks an important question about trying to keep our clinical staff healthy and fit. That is one of the biggest priorities in an epidemic such as this, because the pressures on the NHS are made worse if clinical staff are themselves poorly. At this stage the CMO has not decided that the cancellation of conferences or major events is proportionate, but that remains one of the options laid out in our CV plan. If necessary, provisions for videoconferencing and alternative ways of attending training will be considered and put in place.
Wuhan Coronavirus
Baroness Finlay of Llandaff Excerpts(4 years, 3 months ago)
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Baroness Blackwood of North Oxford
The noble Lord is quite right that each of us has a role to play in preventing the spread of infection. At this point, the advice is that, if you have travelled from any of the infected areas or have been part of the contact tracing, you should self-isolate. Should you have any of the symptoms associated with coronavirus—a cough, fever or shortness of breath—you should stay indoors and call 111, even if the symptoms are mild. Outside the question of whether you have had any contact or travelled to the affected areas, the advice from the Chief Medical Officer is that effective handwashing and the “Catch It, Bin It, Kill It” concept—to use tissues when you sneeze or cough and to throw those tissues away—is the most effective way of limiting the passing on of infection, and each and every one of us has a role to play in doing that. However, I am happy to pass on to the House authorities the point the noble Lord has made and ask for communications to be sent from Public Health England with the most up-to-date information.
Baroness Finlay of Llandaff (CB)
My Lords, I thank the Minister for bringing the update to the House. Among all those people to whom we owe a debt, we should particularly single out the chief medical officers, led by Chris Whitty, who is an epidemiologist and therefore has an in-depth understanding of the science. We should also thank the owners and crew of, and all those on board, the “Diamond Princess”—a British-owned vessel—who are working with the Japanese authorities and doing all they can to contain the outbreak that has occurred there.
One of the difficulties—this was alluded to by the noble Baroness, Lady McIntosh, who is not in her place at the moment—is that in the early stages this is like the common manifestation of any other viral disease. Therefore, self-isolation and being responsible by staying away from people is everyone’s responsibility with all such infections. Unfortunately, some turn out to be coronavirus. Are the diagnostic kits for Covid-19, which I think is now its official name, available to adequate numbers of hospital laboratories which are under public health supervision? Are those diagnostic kits available across all four nations of the United Kingdom? Are they linked to Colindale so that there is good co-ordination of the way in which the diagnostic procedures are undertaken?
Baroness Blackwood of North Oxford
The noble Baroness is quite right. We are aware that there are British nationals on board the “Diamond Princess” in Japan and that six more people have tested positive for coronavirus, none of whom is a British national. We have offered consular assistance to those British nationals—we have been in touch with the “Diamond Princess”—including one who is in hospital. We obviously pay tribute to the work being done in trying to contain the situation there. I identify myself with the thanks and tribute paid to the work of the CMOs, who are doing an extraordinary job right now to make sure that the UK is prepared.
We are one of the first countries in the world to have an effective test; it is working well. Now that the protocols have been sent to the devolved Administrations, testing centres in Glasgow, Edinburgh, Cardiff and Belfast have started testing already. Labs in Cambridge, Bristol and Manchester have started testing today and Birmingham, Newcastle and Southampton will come online shortly. I hope that reassures the House about the capability already available within the NHS.
Access to Palliative Care and Treatment of Children Bill [HL]
Baroness Finlay of Llandaff ExcerptsFriday 7th February 2020
(4 years, 3 months ago)
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Baroness Finlay of Llandaff (CB)
My Lords, I declare my interests in palliative care, including as vice-president of Marie Curie and of Hospice UK and other roles declared in the register. I particularly welcome the noble Lord, Lord Brownlow of Shurlock Row, who has chosen this Bill for his Maiden Speech.
Let me make it clear: this has nothing to do with assisted dying. My Bill aims to solve two problems for the Government. The first is the ongoing variable access to hospice and specialist palliative care, with even less available out-of-hours. The second is to try to avoid some of the very distressing cases that have gone to court where there is disagreement between the clinical team and deeply distressed, loving parents over the best course of action in the management of a child with a serious life-limiting condition.
I will start with palliative care, which the Conservative manifesto committed to support. Last year, over 492,000 people died in England. It is estimated that, at any time, about 0.75% of the population will have palliative care needs, because the majority of those dying will have a significant terminal phase to their illness. Yet about one-third do not receive palliative care when they need it, particularly those with non-cancer diagnoses, or who are from marginalised communities, LGBT+ or of black and ethnic minority heritage. Those facing death are not just older people. Currently around 49,000 children and young people under 18 and over 55,000 young adults aged 18 to 40 are living with a life-limiting or life-threatening condition; almost 13,000 are aged 18 to 25. Even excluding oncology patients, this prevalence had risen by one-third in a decade, yet palliative care support for these young people is even more patchy than for older adults or small children. That is why the Bill covers all ages.
We know what to do, but we are just not doing it. I am grateful to the Minister for meeting me. I fear she will say that the Government feel they can achieve improvements without legislation, but it has not happened for decades. Major health improvements sometimes need the jolt of legislation and this is one of them. Two examples are smoking cessation, which needed a ban on advertising and smoking in public places, and wearing seat belts in cars. In recent years, many reports have highlighted deficits in palliative care provision, referred to in the many briefings which have been supportive of the Bill. The ombudsman’s report, Marie Curie’s research into inequitable care, and the BMA’s qualitative, in-depth study into end-of-life care are examples. Despite 20 years of strategies and policies, my own inquiry five years ago revealed a 40-fold variation in indicative budgets from clinical commissioning groups, ranging from under £50 to almost £2,330 per palliative care patient per annum. Yet almost half the respondents had no plans to update or review their palliative care provision.
Now it is no better; the End of Life Care Coalition found that 18 of 44 sustainability and transformation plans do not even mention end-of-life care, let alone how they would improve it, and only 40% of clinical commissioning groups provided Marie Curie with data on fast-track packages of care. Following Second Reading of a previous iteration of the Bill, the Minister kindly wrote to me confirming that there is a statutory duty to provide maternity services. Indeed, the duty is far wider than only for the ubiquitous experience of being born. In Section 3(1) of the NHS Act 1977 the general duty on the Secretary of State to provide
“to such an extent as he considers necessary to meet all reasonable requirements”
has a list which includes
“such other facilities for the care of expectant and nursing mothers and young children as he considers are appropriate as part of the health service.”
A notable aspect of the way this list is written is that it focuses on the diagnosis, treatment and aftercare of those who have suffered from an illness. In 1977, there was a deep culture of death denial. When services only strived for cure, death was a failure. Indeed, only 10 years earlier Cicely Saunders had opened her hospice—St Christopher’s—and had begun to shine a bright light on the need for medical research to improve the care of the dying. From that beginning, the hospice movement came about outside the NHS and gradually, as the benefits of all it does became evident, the specialty of palliative medicine was recognised in 1989, 12 years after the 1977 NHS Act mandating maternity care. Now it is time to update the obligations of the NHS and end excessive reliance on voluntary donations to provide care for the only other universal experience after birth, which is death.
Hospices renowned for excellent care have sprung up across the UK. Outreach teams go into people’s homes and hospital support teams transform patients’ experience when faced with a terminal illness. All too often, that is at the time of diagnosis. We all recall our much-loved colleague Lady Jowell and her powerful advocacy for research moving the frontiers of knowledge to improve care and outcomes. Systematic reviews, including one I co-authored, have shown the outcome benefits and cost efficacy of palliative care teams. These services are concerned with far more than just the last days of life.
NHS England has estimated that improved recognition of palliative care needs and services outside hospital could improve care and reduce hospital costs by £180 million a year. Previous iterations of this Bill contained more detail—detail that is better in accompanying guidance. The Bill would ensure that those commissioning services meet the duty to reduce inequalities, as required in Section 1C of the National Health Service Act 2006. It reinforces current strategies, such as the “Ambitions” framework, to meet the Government’s commitment, in “Our Commitment to you for end of life care” and the comprehensive personalised care model, to end variation by 2020. It fulfils the pledges of the NHS constitution and the rights of patients to care appropriate to their needs.
Last August’s announcement by the Prime Minister of a welcome £25 million to be administered through sustainability and transformation partnerships is a one-off grant. Unless changes are incorporated in strategic plans, as Clause 4 of the Bill requires, improvements will not be sustained. Clause 2 would ensure that a hospice with in-patient beds can access supplies from the drug tariff. There is a wide variation in how hospices access the medication and supplies they need, especially out of hours. Hospices with adequate pharmacy support can provide expert advice on medicine management, particularly for complex treatment regimes, reduce prescribing errors and ensure safe medicine supply and disposal.
Some 27 years ago my hospice was the second in the UK to take on a part-time pharmacist; in her first two years she saved more than the cost of her salary. Now, although many hospices have pharmacy support, the arrangements with CCGs are very variable, ranging from nil to more than 67 hours a week, but many cannot access GP or hospital records. I have been given examples of hospice drug costs being halved when supply was transferred from an FP10 model to a full hospital pharmacy supply.
I turn to the difficulties and tragedy of children who are imminently dying, where conflict results in an application to the High Court under the Children Act 1989. The wording of the Bill has been developed following several publicised cases where the parents of a child with a life-limiting prognosis sought other treatment options. Sometimes, communication broke down to such an extent that court action was instigated over proposed treatment or treatment-withdrawal decisions, or to prevent transfer of the child’s care to another reputable provider. I am grateful to Chris Gard and Connie Yates, here today, who generously shared their experience to try to prevent others going through what they experienced, when a polarisation of views made it all the harder for clinicians and Charlie’s parents. They had sought a three-month trial of an oral supplement costing £3,000, with a suggested chance of success of more than 50%. They knew it could fail, yet legal fees of more than £l million, a media circus and acrimony ensued. Three years after Charlie’s death, his mum says, “I just wanted to know we’d done everything we could.” Such grief does not fade.
Legal action has many detrimental effects. It exacerbates failures of communication, increases stress and has long-term mental health sequelae. Clause 2(2) states that independent mediation must be offered early by the hospital when views are diverging before proceeding to court. Mediation, voluntarily undertaken and with information shared openly between clinicians and the parent or parents, can ensure that parents feel listened to and are less intimidated by the power differential of clinicians with complex medical knowledge. Options for a second opinion can be discussed. Of course, if mediation fails for whatever reason or the child needs urgent life-saving interventions or abuse is suspected, subsection (2) would not apply.
Some major clinical decisions are terribly difficult. Overall, treatment or an intervention is ceased because no therapeutic goal is being achieved or the intervention has become excessively burdensome. Similarly, a proposed intervention that poses disproportionate risks of significant harm would be withheld or the risks minimised by transferring the child to a more suitable setting. However, often things are far from clear-cut. They must be carefully weighed in the balance of harms against benefits, but risk aversion must not deny realistic hope. Prognosis is an inexact science and the ways a child adapts to progressive disability are unpredictable.
When deciding the best interests of the child, all aspects of the child’s life and experience must be considered. When the child can express wishes and feelings, these are paramount. When they cannot, it is the parents who normally know the child extremely well, and are aware of the child’s wishes and feelings, aspects that comfort the child and the way that the child feels valued. While the child is alive and therefore has interests, those interests are unique to that child; but all interests cease on death.
Clause 2(4) would give appropriate weight to parental views in the court process, in line with societal and medical norms, in the weighing up of the benefits and disbenefits of a proposed course of action. I am most grateful to the noble Baroness, Lady Jolly, for sharing with me a draft amendment that may help clarify this in relation to disproportionate risk of significant harm and improve this subsection, which I know has caused some concern. The subsection does not form a court direction. It is compatible with the Children Act, which emphasises the crucial importance of the child’s interests, wishes and feelings. It allows the healthcare provider to have the chance to show that a different treatment plan is in the child’s best interests. It does not give precedence to one parent’s view over another; the court must decide on an individual basis, as at present.
This Bill solves two major problems for the Government. First, it can show that they are determined to ensure good palliative and end-of-life care for everyone, everywhere, at all times of the day or night. Secondly, it would resolve some distressing disputes between loving parents and clinicians, rather than proceeding to court. I beg to move.
Baroness Finlay of Llandaff
My Lords, I thank all noble Lords who stayed behind on a Friday to contribute and who have done so much research behind the speeches they gave in support of my Bill. I can confidently say that the first part of the Bill has full—from many, completely overwhelming—support. I am extremely grateful for that, as will be all those who are trying to provide excellence in end-of-life and palliative care. I single out the noble Lord, Lord Brownlow, for his amazingly warm maiden speech, in which he showed his understanding of vulnerability and of the fundamental principle of the duty of people in society to look after each other. All noble Lords gained a great deal from it.
I know that the hour is late and we all want to move on, but I will turn briefly to the concerns expressed over Clause 2(4). I am delighted that so many noble Lords want to discuss it. I am more than happy to do so, and to amend it. We have to get things right; this was my humble start. We have fantastic expertise. I reassure the noble Lord, Lord Hunt, that I am in conversation with Together for Short Lives. The noble Baroness, Lady Jolly, has been incredibly helpful to date and I am sure would join me when I say that we should expand the discussions to include the noble and learned Baroness, Lady Butler-Sloss, the noble Lord, Lord Hunt, the noble Baroness, Lady Brinton, and my noble friend Lady Hollins, all of whom have enormous experience. There is no conflict; the wording in the Bill is not right. However, we do need to rebalance the way that the voice of the parent who is genuinely concerned can be heard—probably in the pre-court time—and is then represented by barristers speaking on their behalf.
I take slight issue with the noble Baroness, Lady Meacher, over parents always wanting their child to stay alive. I have had in-depth conversations with parents who have said: “Enough is enough. Can we withdraw? Can we stop?”. I have been involved in extubating children and looking after them as they die peacefully and gently in their parents’ arms. I have helped parents lay out their child after death. It is such an anguishing time, but their overriding concern is to prevent the suffering of the child they love and to have their views and culture respected in the way that that is done.
I am grateful, too, to the noble Lord, Lord Berkeley of Knighton, for highlighting the need for open conversations. I declare an interest in Dying Matters; it is part of Hospice UK and I was part of the group that set it up. It has done an enormous amount to lift the lid off the taboo. People now talk openly about dying. If you go in to any out-patient department, people will sit and talk openly with clinicians about their death and dying. In the gap, the noble Lord, Lord Kerr of Kinlochard, rode into the debate like a shining knight to blow apart the reasons for not legislating for access to palliative care. I would welcome further advice from his vast experience on how we drive this forward. I am sure that that will be in conjunction with the noble Lord, Lord Ribeiro, who brought his experiences and salutary tales of how it used to be. He and I know how awful it was and how it does not need to be like that.
On mediation, the noble Lord, Lord Balfe, made a point about the great importance of listening. Nearly always, things go wrong when people have not listened early on—listened to what people say, listened to their expectations and tried to understand things from their point of view. How true that is. If only people spent 80% of their time listening instead of talking, we might have less misunderstanding.
The noble Lord, Lord Sheikh, brought his experiences of the hospice world and his wide support for it, and also his experience of mediation, to support this. I do think a pilot would be most welcome, as the noble Baroness, Lady Stroud, said in talking about the need for mediation. In fact, there is a Court of Protection pilot going on at the moment over mediation, run by a group of solicitors. There is something to be said for the complete independence of somebody coming in, rather than the clinical team that is already involved and can be perceived as having already taken some kind of stance. Certainly, any kind of pilot needs evaluating, so all those comments were very welcome.
Finally, the noble Baroness, Lady Brinton, highlighted that resources are not just money but also people, and the noble Baroness, Lady Thornton, pointed out that you need people to address the variations: money does not do it, you need trained people. She asked about the number of people in palliative medicine. I just sound a tiny note of warning because, as the shape of training changes, there will be fewer doctors for a time, unless we put the numbers up: they will be doing a lot more in acute medicine and supporting acute medical services, bringing their skills there—but we cannot think that, just because the numbers have gone up from the early days, we have got there yet.
I hope that I have adequately paid tribute to the fantastic contributions of everybody in the debate and I look forward to discussions with the Secretary of State and the Minister with responsibility for this area, because I feel we are at the point where sometimes it needs a jolt. I go back to the analogy with seat belts and tobacco control. Perhaps I have still got too much in the first part of my Bill; I am happy to take it down. But laws send messages, and the variation, as seen in the atlas, despite all the work that so many of us have done over decades, shows that it is now time for that jolt to happen. I beg to move.
Coronavirus
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Baroness Blackwood of North Oxford
The noble Baroness asked that question last time and I did not forget. At the moment, Foreign Office travel advice is that anyone who has travelled to the UK from anywhere in China other than Wuhan or Hubei province, but not including Macau and Hong Kong, in the past 14 days and has developed symptoms should immediately self-isolate, even if symptoms are minor, and call NHS 111. Macau and Hong Kong are not included because those territories do not have evidence of sustained community transmission, as has been observed in mainland China, to date. They are therefore not currently included in the same travel advice as mainland China. However, the epidemiological situation in Hong Kong and Macau, as indeed in the rest of the region, is kept under constant review and will be considered in travel advice as we go forward, and reported to this House accordingly.
Baroness Finlay of Llandaff (CB)
My Lords, I am most grateful, as is everybody, to the Minister for updating us. She spoke about person-to-person transmission not having occurred in Hong Kong and those other areas. Will she confirm that to date there has been no evidence of person-to-person transmission outside China? That is, it has come from contact within China and people who have the virus leaving China. Do we have that information?
Also, in modelling for the worst-case scenario that might occur, how many negative pressure room beds do we have across the whole of the UK for those patients who develop severe acute respiratory infection and therefore have to be hospitalised and possibly ventilated in the event of this becoming severe? What evidence is there about the length of time that the virus survives on different surfaces outside the body? Because of the incubation and asymptomatic periods, when it appears that people are still infectious, there is a concern that the virus has quite a long survival time on surfaces, particularly those that may be warm and damp.
Baroness Blackwood of North Oxford
There were a few questions there. With regard to transmission, this is an evolving picture, so the best thing would be for me to send the most up-to-date information to the noble Baroness and put a copy in the Library, as I am sure it will be of interest to the whole House.
On ECMO beds, since April 2013, NHS England has commissioned a total of 15 adult respiratory ECMO beds from five providers in England. There is further provision in Scotland. But in periods of high demand, the capacity can be increased. For example, in the winter of 2018-19, when there was a significant risk associated with flu, the capacity was increased to over 30 beds and similar arrangements are in place for paediatric services. In addition, there are eight commissioned high-consequence infectious disease beds and around 500 infectious disease beds, and at the moment NHS England is confident that it has enough capacity, which I hope is reassuring for the noble Baroness. Obviously, we are keeping that under constant review as the situation evolves.
On the question about surfaces, that is one of the specific reasons why advice has been given regarding personal hygiene—washing hands and using tissues when sneezing—to avoid any forms of transmission that may create the kind of risks referred to by the noble Baroness.
NHS: A&E Waiting Time Target
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Baroness Blackwood of North Oxford
My noble friend is absolutely right. We need to improve access to community care to make sure that people are diverted away from inappropriate visits to A&E. We have said that we will recruit over 6,000 doctors in GP practice, and we are working on that as we speak. We are also increasing the number of GP practices within A&E so that people can be diverted into appropriate care when they go to A&E inappropriately. The evidence is that already around 10% of those attending A&E are streamed into those GP practices, and we are currently trying to increase that provision.
Baroness Finlay of Llandaff (CB)
My Lords, I declare my interest in relation to the Royal College of Emergency Medicine. Do the Government recognise the data from the weekly monitoring of 50 EDs that report to the Royal College of Emergency Medicine that shows that, in the first two weeks of January this year, an average of almost 6,500 people waited more than 12 hours in emergency departments, the figure having risen from just over 3,800 in October? These long waits represent risks to the health, and indeed to the very lives, of these patients. The president of the college, Dr Katherine Henderson, has urged:
“Rather than focus on ways around the target, we need to get back to the business of delivering on it.”
Baroness Blackwood of North Oxford
I emphasise that the review of clinical waiting times has been ongoing since 2018. The issues this winter are being addressed with urgent action in this winter. That includes: increasing the provision of same-day emergency care, so that patients can be seen as quickly as possible and are not admitted overnight, if that is inappropriate; reducing the number of patients who have unnecessarily lengthy stays, so that beds are available for those who need to be admitted; continuing to increase the number of urgent treatment centres, with a standardised level of care, so that those who do not need it can be diverted away from A&E—there are now over 140 urgent treatment centres, which can be booked from NHS 111 in most places; increasing the number of GPs in A&E, so that patients can be streamed to appropriate care; and enhancing NHS 111, so that patients can be booked into GPs locally or diverted to pharmacists.
Young Carers: Health and Well-being
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Baroness Blackwood of North Oxford
The noble Lord has asked a specific statistical question which I want to provide an accurate answer to, so I will write to him.
Baroness Finlay of Llandaff (CB)
My Lords, do the Government recognise that the shortage of beds which is being experienced across the NHS is having an adverse effect on the ability to provide respite admissions when young carers find that they are literally at breaking point? Funded beds in hospices, nursing homes and other places can be essential to maintaining the cohesiveness of a family unit that is under extreme strain.
Baroness Blackwood of North Oxford
Obviously, pressure on the wider NHS and on social care can have a knock-on effect on unpaid carers who provide an enormous and valuable contribution to our health system, and also on those who care for them. I think that many of us in this Chamber will have personal and direct experience of that. That is why we have provided an extra £33.9 billion of funding for the NHS to ease those pressures, why we are working hard to find a sustainable solution to social care reform, and why we want to make sure that we provide carers of all ages with the support they need, first through identification and later by making sure that they have joined-up support right through the system.
National Health Service Infrastructure
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Baroness Finlay of Llandaff (CB)
My Lords, I declare my interests in relation to emergency medicine. Will the Government undertake to look specifically at the problem for emergency departments, given that many of them do not have enough cubicle space for the number of ambulances that arrive and the number of patients who are blue-lighted in? Staff do not have enough space to take a short break from the front line of some of the most harrowing cases that they have to deal with.
Baroness Blackwood of North Oxford
The noble Baroness is very expert in this area, and she is absolutely right that the NHS estate must prioritise areas of most need. This is why we have put in a serious amount of investment. NHS Improvement is also conducting a backlog review to understand where the areas of greatest need are and to assist NHS trusts in prioritising capital spending over the next few months and years.