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
My Lords, it is a pleasure to follow the noble Baroness, Lady Finlay, who has devoted a lifetime to the care of the dying. I thank her for initiating this important debate. It is a pleasure to be able to support this Bill.
As a surgeon, one of the most difficult tasks in cancer surgery was deciding how best to approach a patient on whom you have operated in the hope of achieving a cure, only to discover that their tumour is inoperable. One can buy time and offer radiotherapy or chemotherapy, but inevitably the cancer will win through and the patient will face an uncertain future.
I faced this dilemma in my first month as a surgical house officer when I did not know how to control a patient’s pain after surgery. In those days, we called it an open and shut laparotomy because of the inoperable cancer in the abdomen. Distraught by his suffering, which did not respond to the four-hourly doses of pethidine I prescribed, I turned to the ward sister for help. There was a pause. “Morphine”, she said. It eased the patient’s pain, and they died peacefully.
Dame Cicely Saunders founded the first St Christopher’s Hospice in south-west London in 1967 —the year I qualified. In 1958, she wrote:
“It appears that many patients feel deserted by their doctors at the end. Ideally the doctor should remain the centre of a team who work together to relieve where they cannot heal, to keep the patient’s own struggle within his compass and to bring hope and consolation to the end.”
We would all wish that hope and consolation for ourselves at the end, and that is precisely what the hospice movement has endeavoured to provide over the last 60 years.
As our population ages, more people are reaching an age where the demand on emergency services grows. It is estimated that in 2016 there were 1.6 million emergency admissions for people in the last years of their life. This is a huge burden on hospitals since they account for 30% of all admissions, costing the NHS £2.5 billion. Hospitals should be places for treating patients and, hopefully, curing them. They are not hospices for the care of patients needing terminal care. The provision of hospices nationally is such that many hospitals cannot avoid becoming hospices, for lack of these services.
My Lords, it is a great pleasure to follow the noble Lord, Lord Ribeiro, and to lend my support to the Bill. I declare an interest as a supporter of St Mary’s Hospice in Birmingham. I will focus on palliative care, but I also support the second part of the Bill in response to the heartrending cases that the noble Baroness, Lady Finlay, mentioned, where disagreement arises between doctors and patients over the treatment of life-threatening illnesses suffered by children. She makes a powerful case for parents and doctors to have early access to mediation. Perhaps the Minister might agree to the possibility of funding a pilot programme to examine whether this might be a sensible way forward.
Like other noble Lords, I have received a briefing from the organisation, Together for Short Lives, which has some reservations about the wording of Clause 2(4). Its initial analysis is that this provision might qualify what we understand as the child’s best interests. I think that the organisation has been in subsequent discussions with the noble Baroness and that it now understands the motivation behind what she is offering, but it would be helpful if she could say that she will be in further discussions with it between now and when we reach Committee.
On palliative care funding, I support the main thrust of what the noble Baroness and the noble Lord, Lord Ribeiro, have said. We have a problem with palliative care in this country which is not confined to the funding of hospices; it is about the way the NHS organises palliative care and what happens in care homes. Overall, we do not have a comprehensive palliative care service, and the way I see it, the Bill aims to do just that.
The noble Baroness made some important points about access by palliative care providers to pharmaceutical services. Again, the BMA supports that, and I support its comment that clinicians providing general palliative care advice should have access to specialist care at all times. The other evidence I have looked at is from the Association for Palliative Medicine, which certainly knows what it is talking about. It has warned that access to palliative care services are poor for those of black, Asian and minority ethnic backgrounds and for older people. This is a well-remarked concern about palliative care which, again, argues for a much more consistent approach, and the noble Baroness’s Bill points us in the direction of how we might achieve that.
My Lords, I, too, support this Bill. I endorse what the noble Lord, Lord Hunt of Kings Heath, has just said and congratulate the noble Baroness, Lady Finlay, on coming so high in the ballot and getting an early slot in the parade of Private Members’ Bills. I am grateful for the many briefings that I have received. I warn the Minister that the noble Baroness, Lady Finlay, is a tenacious individual. Should the Minister decline the Committee stage, for which I have an amendment ready to go, the noble Baroness will return next year, as I am sure will many of the noble Lords speaking today. We will not let this issue drop. The response from the Government last June was unconvincing and disappointing. I fail to see how the Minister today can come up with something that will not satisfy.
As has been stated, Clause 1 of the Bill applies to palliative care and support. Midwifery services are available from the state and mandated in legislation. They are freely available to all women. It seems strange and anomalous that end-of-life services do not enjoy the same ease of access and availability of medication to treat pain and prevent suffering. Why should those of us who choose to end our lives in hospices be treated differently from those who find themselves at home or in a hospital when they die? At the end of our lives, we should all have care that is totally person-centred, not one size fits all, whatever our age, colour or creed. Hospices should have the same level of access to pharmaceutical support as settings where NHS clinicians provide care. That should be the responsibility of the local commissioning body—the CCG—as recommended by the noble Baroness, Lady Barran, when she summed up the last Second Reading debate on this Bill.
I was struck by the point made by Marie Curie that 6 million of us will die within the next 10 years. Commissioners need to face that and plan accordingly. It is not something that should just happen. It is a really big number—I think that it is something like 20,000 a day, which is an awful lot. Many of us would choose to die at home, but for many reasons that is not an option.
My Lords, it is always a great pleasure to follow the noble Baroness, Lady Jolly, who made an excellent speech. I rise to support the first aim of this Bill, which is to ensure the provision of adequate funding for palliative care services, including hospices, across the country. Who could disagree with that? Hospice UK tells us that the NHS currently provides only 32% of the cost of adult hospice care and just 17% of the cost of children’s hospice provision. It is extraordinary that hospices still depend upon charitable funds to support such a high proportion of their vital services. Of course, hospices must have access to pharmaceutical services on the same basis as any other NHS-commissioned service. I hope the Minister can give the House some assurance that progress can be made on some of these injustices.
Adequate funding is certainly a necessary condition for the provision of high-quality services, but it is by no means a sufficient condition. The NHS Long Term Plan rightly talks about the need to give patients
“more control over their own health”.
Of particular relevance to today’s debate is the NHS commitment to personalise care in order to improve end-of-life care. Probably the most distressing feeling of anyone facing death is a sense of helplessness, a lack of control. We all know how much more suffering we can bear if we suddenly realise we have some control over it. I cannot be the only person who has had toothache and found that, the minute I booked an appointment with the dentist, the pain somehow did not seem quite so bad. That applies very strongly, and I suggest that the greater the pain and the greater the suffering, the more it applies.
Your Lordships will not be surprised—here I need to declare my interest, as stated in the register, as chair of Dignity in Dying—that I will argue from evidence of the experience in other countries that one of the most effective ways to increase the funding and quality of palliative care, most importantly the latter, is to give terminally ill, mentally competent patients the right to control the timing and circumstances of their own death if they are suffering unbearably: the right to decide for themselves when, despite high-quality palliative care, their suffering has reached the point where they cannot stand it any longer. It is no accident that nearly everyone—84% of people generally and 86% of disabled people—wants this right. We all fear an unbearable death—I certainly do—and would lead happier lives, as well as die better, without the need for that fear.
My Lords, it is an honour and a pleasure to follow the noble Baroness as I rise, slightly nervous and daunted, to give my maiden speech.
As patron of and donor to the Prince of Wales Hospice in Pontefract and the new Thames Hospice build in Windsor, and as a donor to the Alexander Devine Children’s Hospice in Maidenhead, I strongly support the Bill and thank the noble Baroness, Lady Finlay, for bringing it to the Chamber. It is worth noting that, according to Marie Curie, end-of-life care is £280 per day per patient more expensive when delivered in a hospital compared to in a hospice.
I thank everyone in this House from all sides for their kindness, support and advice—as well as Black Rod and her staff, the Clerk of the Parliaments and his staff, our fantastic doorkeepers, the attendants and police officers. All have been incredibly helpful and given me so much guidance and direction. I cannot thank them and all other parliamentary staff enough. I also thank my supporters, my noble friends Lady Chisholm and Lord Callanan, as well as my noble friends Lord Cormack, Lord Leigh and Lady Rock, and the noble Lord, Lord Donoughue, who have all helped me further understand the workings of your Lordships’ House.
My journey to this place started modestly in Anfield in Liverpool, where I was born. Noble Lords will know that Liverpool has gained renown over decades for musical genius, football prowess, sharp wit and a generosity of spirit. I leave it to others to suggest which of these I bring to your Lordships’ House, but I admit to being an avid crime fiction reader and, curiously, a builder of complex Lego models, my latest project being the Taj Mahal.
By the time I was 14, my father’s job had taken us to Doncaster and then Southport. I read economics at Newcastle Polytechnic, where I was a contemporary of my noble friends Lord Callanan and Lord Bates in student and Conservative politics. After graduating, I became a police officer in Slough. I left the Thames Valley Police in 1988 and became a recruitment consultant, with time spent working around the Home Counties and in London.
My Lords, it is a pleasure and a privilege to be able to congratulate the noble Lord, Lord Brownlow, on his excellent and deeply thoughtful maiden speech. The compassion and care with which he has approached this debate are testament to the wisdom and experience that he will bring to this Chamber. His professional success and entrepreneurial track record are matched, as we have heard, by his compassion and philanthropy. His personal charity has been an important driver in addressing disadvantage across the UK, including support for the Alexander Devine Children’s Hospice and the Prince of Wales Hospice, showing his deep, long-term commitment to the issues raised in today’s debate. It is a pleasure to be able to welcome someone with such experience to this Chamber, and I look forward to his continued contribution to this House.
I support this important Bill. As we have heard, Marie Curie estimates that one in four people in the UK does not get the care and support that they need at end of life. It is estimated that over the next year 118,000 people will die not having received adequate care. If their voices and those of their families could be heard in this place today, it would be declared a national crisis. So I thank the noble Baroness, Lady Finlay, for introducing the Bill and for her tireless work fighting for the dignity and respect of all who are dying.
The Bill does two things: it addresses the concerning gap in our healthcare system around end-of-life care; and it would ensure mediation in instances of conflict between parents and health professionals over the withdrawal or the giving of treatment. Following on from the NHS’s 10-year plan, published in January last year, the Bill addresses the failure to include palliative care as a core service of the NHS. This omission has created an unequal system whereby the standard of treatment at end of life is influenced far more by geographic postcode than a commitment to manage suffering and dignity in someone’s final days. The Bill addresses this issue by ensuring access to specialist palliative care in hospital, in the community and in places of usual residence.
My Lords, it is a pleasure to follow the noble Baroness, Lady Stroud, and I agree with a great deal of what she said. It is also a privilege to have heard, and be able to salute, the excellent maiden speech of the noble Lord, Lord Brownlow of Shurlock Row. The points he touched on suggest that he will be a valuable addition to your Lordships’ House.
I am delighted, too, to support my noble friend’s Bill for a variety of reasons. I hope that the Government will find our deliberations constructive, whichever way they feel they must go at the end of our debate, because there is considerable room for improvement in end-of-life and palliative care. My noble friend Lady Finlay is absolutely right about that. I hope she will forgive me but I must say that, curiously, I come to support her through our divergence of views over assisted dying. My noble friend eloquently opposed assisted dying because, as with so many of the medical profession, she felt it incompatible with her role as a doctor but also—perhaps more importantly, relative to our discussion today—because she feels that in this day and age no one should die in pain, given the palliative care that is potentially available. That is at the crux of her Bill.
There was, as I recall, a fairly widespread desire in the assisted dying debate to see better palliative care. I completely accept that assisted dying is a matter of principle that goes well beyond the scope of this Bill; nevertheless, there are several areas where the two debates intersect. They intersect because, though no one should now die in agony, the fact is that they sometimes do. Even if that is seldom the case, which of course we all hope, what is beyond contention is that palliative care and hospice availability is something of a postcode lottery, as we have heard.
Before going any further, I pay tribute to the many quite exceptional staff, up and down the country, who provide absolutely wonderful care and support, which amounts to love and compassion. I have been privileged to witness this and was deeply moved by the generous commitment of staff. We hear all too often about abuse and cruelty in the care of the elderly and vulnerable, and of course that is terrible, but not often enough about examples of best practice in our hospices or the dedication of doctors such as my noble friend. To find oneself at the end of life in one of these hospices with an enlightened consultant is great fortune indeed. But it should not be a question of good fortune or luck, or depend on where you live.
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“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.
We need more community-based care to support demand. The Bill is welcome, as it rightly asks for such care to be commissioned in the same way as other care, by the clinical commissioning groups—CCGs. Marie Curie, to which I am grateful for its briefing, estimates that without properly commissioned palliative care by CCGs, the cost of providing emergency admissions for patients in the last year of life is likely to increase by £1.6 million by 2041. We do not have the capacity to meet the extra beds required to support this need, particularly when innovations in medicine and surgery are designed to reduce patients’ length of stay, and while maintaining staffing levels is a continuing problem.
There is no clear national strategy for end-of-life care, and, despite the early pioneering work of Dame Cicely Saunders, hospitals are supported in the main by charities and the public, with the NHS providing about a third of the cost of adult hospices. I believe there are 200 hospices in the UK collectively caring for 225,000 people and their families per year, 80% of which is delivered in the patient’s home. It is time to provide a comprehensive nationwide service from which all can benefit, through the CCGs.
The Bill will ensure that access to hospice care is not determined by a postcode lottery where some areas are better provided for than others. It is important to recognise that many hospices will be running a deficit budget in 2019-20. As the noble Baroness, Lady Finlay, observed, the Prime Minister’s announcement in August 2019 that £25 million will be made available to hospices and palliative care services in England is to be welcomed, but it is non-recurring. It will fix the roof while the sun is shining, but without sustainable funding it is unlikely to fix the roof long term.
A National Health Service which delivers care to all at the point of need should also be able to do so for those at the end of their lives through a better-funded and provided-for hospice service. Perhaps the phrase “from cradle to grave” should have renewed meaning as we all get older and the demand for end-of-life care increases. I believe that the Bill will go a long way to deliver these aims, and I am delighted that it has wide and strong support from the BMA, Marie Curie, Hospice UK and, I hope, your Lordships.
On Clause 2, which has been mentioned, earlier this week, along with the noble Baroness, Lady Finlay, and the noble Lord, Lord Sheikh, I met Connie Yates and Chris Gard, who is here today. They are the parents of Charlie Gard. I was impressed by their quiet determination to avoid legal challenges in these cases which serve only to divide and entrench opinion. Their plea for mediation before litigation, put so eloquently by them on the “Victoria Derbyshire” programme yesterday, puts a human face on a problem that one must address to prevent others suffering the same fate. The BMA has raised concerns about Clause 2(4), believing that any medical treatment proposals put forward by any person holding parental responsibility for a child are in the child’s best interests. It believes that this may expose children with life-limiting illnesses to unproven or sub-optimal treatments. It is important to be clear where the balance of responsibility for treatment lies—with the doctors responsible for the child’s care or with the parents. I am sure that we will return to this thorny issue in Committee and I look forward to considering the amendment to be tabled by the noble Baroness, Lady Jolly.
With those reservations, I am pleased to give this Bill my full support and I thank the noble Baroness, Lady Finlay, for introducing it.
I will refer to St Mary’s Hospice in Birmingham because the challenges it is facing are very relevant to those being faced in all parts of the country. Over the past 12 months this extraordinary place has supported 1,756 individuals living with a terminal illness. That case load has risen by 30% over the past five years. The hospice has looked at future projections and it expects demand to rise again over the next decade or even longer. The problem is that NHS funding has not risen to the same extent. Birmingham has had to reduce its service and the number of in-patient beds from 20 to 15 as a result. It costs £8.5 million per year to run the hospice; NHS funding amounts to 36% of this. Rising costs, particularly of drugs and pharmacy services, are not fully covered by the grant that comes from the NHS.
I said that St Mary’s Hospice is a wonderful place. I should have said it is a wonderful concept, because most of the work it does is in the community. It has developed the concept of satellite sessions, particularly in the inner city of Birmingham. The noble Lord, Lord Howard, came and spoke about this exciting new development to a reception we held in your Lordships’ House a year or two ago. It has a case load of 500 patients living in the community at any one time. When you compare the wonderful service it gives with the fact that too many people—the estimate we have at the moment is 54% of people—are dying in hospital, when most people express a wish to die at home, we clearly have some major problems.
I pay tribute to the NHS, because there is a pan-Birmingham approach. St Mary’s Hospice has been given a leadership role across Birmingham and Solihull Clinical Commissioning Group to work with partners to plan and transform the delivery of palliative care and address some of the challenges I have talked about. They have a shared vision which aims to identify everybody who might benefit from palliative care, to enable more people to live independently and to reduce overreliance on specialist and acute resources. That is just in the right framework. I think the Minister will agree that it fits into the philosophy of the NHS long-term plan and is something to be supported. I hope that Birmingham and Solihull CCG and STP will be able to look at this carefully and provide the wherewithal to enable it to happen. Clearly, at the moment patients in acute hospitals or the care sector are really missing out on the kind of service we know could be delivered if we could only shift the resources around in a more effective way.
The Prime Minister’s announcement in August of an additional £25 million investment was, of course, very welcome indeed, but I echo the noble Lord, Lord Ribeiro: it would be very helpful if this could become an annual payment rather than a one-off. The Government are reluctant to intervene in the NHS but in this area they need to tell the NHS to get real about funding, to stop having annual contracts and to have long-term, running contracts so that hospices know three years ahead the amount of money they have. When we come to the Second Reading of the NHS Funding Bill, the Minister will talk about the certainty she has given the NHS over five years. I think the Government should give certainty to hospices as well. I very much support the Bill.
As a society we must think more about our deaths than we do currently. Good end-of-life care is expensive and not always available from some CCGs. That should not be the case. A good death should not be a lottery. It should be a right, not an accident of where you die. That anomaly needs sorting and I hope that the Minister will not disappoint. A clarification of the department’s thinking on this would be appreciated. If the Minister is not able to offer that now, I would be grateful if she could add it to my letter.
Clause 2 clarifies the situation when treating children with a life-limiting illness. In advance of the previous incarnation of this Bill, I had the privilege of meeting the parents of Charlie Gard, who died so tragically, in the gaze of the public in a media storm, nearly a week short of his first birthday. They were determined that no family should be put through the torment that faced them when there was an impasse between the interests of the child and parents and the clinician and hospital. There was no mediation. Noble Lords will remember the tragedy unfolding on our screens almost hour by hour. Dignity and mutual respect vanished for the dying child, his parents as helpless witnesses, and the clinicians. The Bill of the noble Baroness, Lady Finlay, remedies that, but I am sure that the Minister will tell us that it should be happening anyway. We know that and I am sure that in hindsight everyone involved in Charlie’s care knows that, too, but it could happen again unless there is legislation that states clearly how such a situation should be better handled.
I hope that the Bill is committed after this Second Reading debate, as I have an amendment ready to table. The noble Baroness knows that and believes that it sits well within her Bill—I am grateful for her endorsement today. Many organisations in their briefings have expressed concerns about Clause 2(4). My amendment would insert after Clause 2(4):
“Any medical treatment proposals put forward by any person holding parental responsibility for the child must be considered by the court, unless contrary evidence is established that the proposed treatment poses a disproportionate risk of significant harm.”
The amendment would ensure that the court is able to prevent a proposed action where it is not in the best interests of the child—in other words, when it is clearly established that the proposed action or medication would cause significant harm. Such harm should be clearly established to outweigh the harms from the alternate proposed course of action.
Fortunately, very few of us have found ourselves in the position of watching a child die. I lost a cousin before his first birthday, well over 60 years ago when I was a small child, and I still remember the impact that it had on the extended family. My mother never forgot his birthday and his parents still remember it now. We owe it to society that any palliative care that is given is properly commissioned. In the case of children receiving palliative care, mediation should be readily available in all situations where parents and clinicians fail to find a meeting of minds and the court should be able to prevent the proposed action when it is not in the best interests of the child.
I am sure that the Bill, when amended in Committee, will offer a way forward that is practical and workable and offers dignity in dying to the individual and their family. The Prime Minister has announced that £25 million will be provided to hospice and palliative care services. That must be commended but, as the noble Lord, Lord Hunt, said, a one-off is fine and dandy, but it needs to be sustained. We need to make sure that facilities remain open and that the quality of end-of-life care is improved. We eagerly await the Minister’s response. I hope that we are not disappointed.
Surely relevant to the need for funding was the cash injection of 72 million Australian dollars in Victoria to increase the number of palliative care beds and access to home-based palliative care when assisted dying legislation was passed in 2017. In Western Australia, where assisted dying was legalised last year, the Government provided 17.8 million Australian dollars for palliative care. In California, where assisted dying has been legal since 2016, doctors say that the conversations that health workers are having with patients are leading to patients’ fears and needs around dying being addressed better than ever before. The whole point of the assisted dying process and safeguards is that the patients are at the centre. They are the decision-makers, they are consulted at every turn and the result is better palliative care.
Probably the most powerful evidence of the link between legalised assisted dying and enhanced palliative care provision comes from Oregon, where assisted dying was legalised 22 years ago. Oregon is considered to have the best palliative care services in the whole of the United States, and that is not an accident.
An important lesson from Oregon is that patients’ experience of palliative care depends not only on funding, as I have already indicated. Studies of Oregon’s palliative care services show that the Death with Dignity Act has resulted in more open conversations about death and dying, and more careful evaluation of end-of-life options. In the UK, the—in my experience, massive—taboo attached to dying is inhibiting doctors, and indeed relatives, from having those open conversations. The dying person therefore feels far more alone with their suffering than they should. The safeguards attached to the Oregon model of assisted dying, which we plan to introduce in the UK, with a few adjustments, ensure that patients facing death are encouraged to talk about their wishes, fears and treatment options. Nearest relatives are required to have a conversation with the patient’s doctor about their wishes for the patient. Doctors say that since the passage of the legislation, they have made the effort to learn more about the treatment options available. The quality of palliative care increases as a result, and that is what this debate is all about—better palliative care.
It is understandable that many palliative care doctors oppose assisted dying until the relevant law is passed. Then, as they experience their services improving and their patients being more involved in their care, the patient-centred doctors change their minds and support the freedom of dying patients to choose precisely how and when they die. We have evidence of this shift in the attitude of palliative care doctors from Oregon, Canada and elsewhere.
Along with other noble Lords, I want to see the best possible palliative care funding in the UK. However, until patients have some control over their own dying process, their experience of palliative care services will not be as good as it could be and, for a minority, dying will continue to be an utterly intolerable experience, however good the funding. That is what the report The Inescapable Truth illustrates in agonising detail. I could read it only in bits, as it was so painful to see what people had gone through before they died.
I turn briefly to Clause 2 of the Bill, which concerns the treatment of children with a life-limiting illness. In general, I am a great supporter of mediation as an excellent way of resolving disputes. However, I am profoundly concerned about this clause and, in particular, subsection (4). It assumes that parents will put the best interests of their child first, but it fails to take account of the very powerful need of any normal parent to keep their child alive. I argue that it is an animal instinct in us all and is essential for the preservation of the species. It is that strong—the feeling that “We just must keep that baby alive.” My heart goes out to any parent faced with the dilemma that Clause 2(4) seeks to address—misguidedly, I believe.
In my humble opinion, as the mother of four children, Clause 2(4) is very dangerous for anyone really committed to ensuring that the child’s best interests always remain paramount in these almost impossibly difficult situations. No assumption should interfere with the fundamental principle of the primacy of the child’s best interests.
In 1996, I started my own business. There were just two of us on day one. Today, that business employs thousands of people and works with clients all over the United Kingdom. We provide specialist resources focusing on governance, compliance and regulation. A few years ago, we passed the milestone of having paid over £1 billion in tax, proudly contributing to the British Exchequer as well as creating jobs and opportunity directly.
To date, I have started or invested in 16 companies, from pubs and restaurants through housebuilding and fashion to travel, technology, documentary filmmaking and education and, most recently, two green technology companies. Between them they operate throughout the UK as well as in Sydney, Shanghai, Singapore and Toronto. A thread that weaves its way through my portfolio is people. While I believe that an invisible hand works best in the market and the economy, I think there needs to be a more visible, gentle hand to protect vulnerable and less aware people.
While legislation and regulation exist to protect these and others, an essential problem is the failure of some organisations to comply. It cannot be right that an employee of the BBC has to go to an employment tribunal to have it ruled that she was denied equal pay on the basis of gender when a male colleague earned six times more than she did; nor that millions of bank customers can have financial products mis-sold to them. These are just two examples of the failure to comply with existing rules, but I believe there is scope to legislate and regulate further to protect people and resolve injustices without trampling on personal freedoms. That is why I look forward to the introduction of the online harms Bill and the much-needed domestic abuse Bill. But more needs to be done as part of our collective duty of care.
It cannot be right that a TV viewer can be enticed through advertising to take out loans that carry interest rates of over 1,000%. It cannot be right that a tenant justifiably granted a council house continues to stay there having married somebody earning £40,000 per year, and is still there today with an even bigger joint salary, as the original tenant is now also earning. It cannot be right that a person can become a fully trained nurse within the NHS only to leave, move abroad, become an agency nurse, commute to the same hospital and earn in two weeks what an equivalent employed nurse earns in a month, allowing the contractor to spend two weeks a month off duty and in the sun. It cannot be right that, for the same train journey, a passenger can more than halve the cost of a ticket by splitting the train journey into smaller chunks with multiple tickets, compared to one ticket bought for the whole journey.
I am very proud of my own charitable foundation, which works to help individuals or communities where there is an element of disadvantage, locally to me and across the country. It is through my foundation that I first started working with my Member of Parliament, Theresa May, as my foundation worked on projects throughout her constituency. Today that work continues, and she and I are also working together on a number of green initiatives as part of the UK’s trailblazing goal of achieving net zero emissions by 2050. So my final thanks are to our former Prime Minister, who nominated me to join your Lordships’ House. I know I have a lot to live up to.
However, my thanks are tinged with regret—regret that the challenges and circumstances of the last three years have meant that we have not fully benefited from the ideas and initiatives that she had in mind when she stood on the steps of Downing Street wishing for a fight against burning injustices. As she said, if you are born poor, you will die on average nine years earlier than others; if you are black, you are treated more harshly by the criminal justice system than if you are white; if you are a white working-class boy, you are less likely than anyone else in Britain to go to university; if you are at a state school, you are less likely to reach the top of your profession than if you are educated privately; if you are a woman, you will earn less than a man; if you suffer from mental health problems, there is not enough help to hand; and if you are young, you will find it harder than ever before to own your own home.
Much progress has been made over the past three years but these burning injustices remain. That is why, with an inherent sense of optimism, I hope that the Government, with their majority, will deliver on levelling up our society and create one nation that is fairer and more just. I thank noble Lords for the immense courtesy that they have shown me today.
Without the Bill, the crisis of care will become only more acute. Over the next 25 years, demographic changes will increase the need for end-of-life palliative care, as more people pass away each year with more complex needs. A recent analysis published in BMJ Supportive & Palliative Care found that clinical commissioning groups had significantly varying budgets for palliative care services, from approximately £51 to £2,300 per patient per annum. This is largely the result of a consistent failure to build a broad institutional approach to palliative care, as individual founders and local organisations have historically been the dominant forces in creating and funding hospices, for example. This issue is compounded by the fact that, as we have just heard, many hospices do not receive pharmaceuticals from the NHS, meaning that hospice budgets are consumed largely by the provision of essential medicines—a further inequality skilfully addressed by the Bill.
The Bill also addresses the issues raised by the tragic incidents involving the families of Charlie Gard and Alfie Evans. To lose a child is a tragedy that I believe every parent dreads, but I cannot imagine what it is like to lose a child under the glare of intense media scrutiny, with the public and professionals debating your intentions as a parent for your child. I offer those families my sincerest condolences.
For Chris Gard and Connie Yates, the pain and anguish they experienced with Charlie’s illness was exacerbated by the feeling that they simply were not being listened to. When they requested mediation and it was refused, and Charlie’s treatment was escalated to the courts, they not only felt powerless but were legally unable to access Charlie’s medical records to obtain a second opinion.
If mediation was the expected conflict-resolution pathway, the suffering of all families involved in these types of cases could be greatly eased. A recent Dutch study published in the official journal of the American Academy of Pediatrics found that, when there were conflicts regarding end-of-life decisions, by postponing these decisions until the 4% of conflicts within the administering team and 12% of conflicts between medical practitioners and parents were resolved, a consensus was ultimately met in all cases.
When our court system is so strained by parents who are failing their children, surely we want to support as much as possible those who seek to do everything right. Mediation is a crucial instrument in aligning the love and empathy of a parent and the practical medical reasoning of a practitioner. The goal of medicine is to heal and relieve suffering. As Eric Cassell warns in The Nature of Suffering and the Goals of Medicine,
“failure to understand the nature of suffering can result in medical intervention that (although technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.”
Our adversarial court system is not conducive to the relief of suffering. Charlie Gard received months of intensive care that health professionals felt was contrary to his interests, all the while without receiving the nucleoside treatment that his parents desired. This treatment, I might add, did not involve any invasive surgery but was a simple powder that was to be added to his milk formula. Nobody got the outcome they wanted, and it is evident that the suffering of Charlie and his family was greatly prolonged. The mental anguish in these situations is of a traumatic nature. For Charlie’s parents, not a day goes by when they do not wonder whether, if the circumstances around decision-making had been different, they could have done more for their son. This situation could have been avoided with a focus on mediation and by ensuring that consensus was reached before any decisions were made. The Bill will stop this happening again.
Over the course of this Parliament, more than 3 million people will die in the UK. Of these, around three-quarters will have an expected death. They have the right to know that they will get the care they need when they need it and, where there is conflict over that care between parents and physicians, that mediation will be available to them. I commend the noble Baroness, Lady Finlay, for introducing this Bill, which has the power to ensure that children and adults alike receive the dignified and respectful care they deserve.
One thing that is certain in this world—even in your Lordships’ House—is that every one of us will die. Many of us will not need neurosurgery, cardiac treatment or a new hip but we will, as sure as night follows day, vacate our perch. We should face that unavoidable fact, not morbidly, but with imagination and creativity. We will not all die in our sleep, quietly and peacefully, however much we might wish for that—although palliative care can help. Surely the one thing we all want is the best possible medical assistance to lead us gently from one world to the next, even if the next is only the unquiet grave.
It is odd, as my noble friend has pointed out, that this area of medicine suffers in comparison with other healthcare services. It is good, as we have also heard already, that the Prime Minister announced in August last year that £25 million would be provided for hospices and palliative care services. Unfortunately, spread over these combined care facilities, that does not go terribly far, so I ask the Minister, as others have done, whether there will be a similar figure for 2020 and possibly for succeeding years.
I turn to the second part of the Bill. Clearly, the painful cases—and, oh, how painful they are—where medical advice goes against the wishes of the family of children receiving treatment that doctors might wish to withdraw or alter, and where a High Court application has to be made, are circumstances that we should seek to limit as much as possible. Whether mediation, a necessarily rather amorphous and pliable concept, could assist in reducing such applications I am not quite sure—fortunately, I shall be followed by a much greater legal mind than mine—but anything that helps the relationship between the parties has to be welcomed.
Both these subjects are sensitive, even taboo to some, but airing them with clarity and compassion can only help us to find better ways of living and, indeed, dying.