Amendment 47

Health and Care Bill - Committee (3rd Day) (Continued) – in the House of Lords at 8:15 pm on 18th January 2022.

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Baroness Finlay of Llandaff:

Moved by Baroness Finlay of Llandaff

47: Clause 16, page 13, line 38, at end insert—“(ea) specialist palliative care services,”Member’s explanatory statementThis amendment would ensure that specialist palliative care services are a core service available equitably across all sectors.

Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Deputy Chairman of Committees, Deputy Speaker (Lords)

My Lords, to state the obvious, everyone will die. On average, one person dies every minute, and every 22 minutes a child loses a parent. Dying patients are seen in every part of healthcare, and the vast majority will have some level of palliative care need. I declare my interest as a specialist in palliative medicine over decades, and my roles with different relevant hospice and palliative care charities and being employed through the Velindre Cancer Centre.

Amendment 47 would introduce a specific requirement for clinical specialist palliative care services to be commissioned by integrated care boards in every part of England. Amendment 52 is to inform the debate as it draws on the World Health Organization definition of specialist palliative care. These amendments are strongly supported by Marie Curie, Hospice UK, Together for Short Lives, Sue Ryder and the Alzheimer’s Society.

Let me be clear; this is about specialist clinical services. General basic palliative care should be a skill of every clinician. But, until it is recognised as a core specialty, generic services will continue to view it as an extra and learning will not be integrated across all areas. Educating and training are crucial duties in upskilling others. In the pandemic, palliative care has been propelled centre stage as a driver of good practice. Specialist palliative care is a relatively new specialty, which is why it was not included in the early NHS legislation. The other truth, that everybody is born, was recognised by requiring every part of the UK to have maternity services. That has been reiterated in legislation and in Clause 16 of this Bill, along with dental and other services.

The hospice movement grew up outside the NHS, spearheaded by Cicely Saunders, who realised that bringing about change within the NHS was painfully slow. This has meant that a patchwork of services has developed in the wealthier parts of Britain. In some areas great, innovative integration with community social care is happening. But other areas of enormous need are left with almost no service, or no service at all. Now we depend on fundraising events for people to get expert support for pain and other symptoms, and for psychosocial distress. No one would advocate to have a cake sale so that a woman in obstructed labour can have a caesarean section, so why turn a blind eye to ways to improve the quality of life of those with serious and life-threatening illnesses and support their families? Debate in the other place suggested that palliative care is aftercare; it is not. It is not an add-on just before death. It must be an integral part of care so that problems are dealt with in a timely way, not left to escalate into a crisis.

In Section 3 of the NHS Act 2006, clinical commissioning groups had the same general duties as in this Bill, yet significant gaps in specialist palliative care services persist between clinical commissioning groups. Some populations fare particularly badly: people who are homeless or in prison, BAME groups, Gypsies and Travellers, LGBTQ+ people, people with learning disabilities and those living in poverty, alone or with dementia. Yet the way a person dies lives on in the memory of those left behind.

Marie Curie’s freedom of information requests to English CCGs revealed an average spend last year of as little as £19.02 per person aged over 65. Only 35% of CCGs responding offered specialist palliative care services in all care settings overnight and at weekends, yet such services are known to reduce pressure on NHS services and achieve savings by reducing the number of hospital bed days occupied and unplanned admissions.

Research from King’s College London and supported by Marie Curie reveals that of the 23 integrated care systems in England with published strategies, only six identified palliative and end-of-life care as a priority area. Five mentioned broad bereavement support and only three identified relevant measures of success, such as reduced hospital admissions.

In the pandemic, many hospices hit financial instability head on as fundraising dried up. The government bail-out was essential, and I think that everyone was very grateful. In 2008, Wales had tackled this problem head on, aware that if a hospice folded, the clinical core service would still be needed. With just over £2 per head of population investment, we moved to provide core specialist clinical palliative care through an agreed funding formula, moving to seven-day services and 24/7 advice to any health or social care professional with a patient needing help. These services cover hospitals, hospices and community, with increasing integration reaching areas where no services existed. We instigated a paediatric service and an all-Wales unified patient record across the NHS and voluntary sector providers, which I described last week.

The outcomes that we achieved warrant consideration. To quote one nurse:

“The patients have access to specialist palliative care nurses, advice and experience on the weekend, which is great, and if we weren’t there, they wouldn’t have that, and they’d suffer for it. Unfortunately, people deteriorate and die out of hours. They don’t all die Monday to Friday, nine to five.”

At the south-east Wales cancer centre, specialist palliative care is now embedded in the acute oncology service, whose audit revealed that almost three-quarters of the patients presenting to acute oncology had a level of unmet need in palliative care but were unknown to any services at the time. The majority then had same-day, face-to-face palliative care review or were referred to their local team. In the community last year, there were more than 3,700 patient contacts, over 1,000 being face to face. I remind the Committee that that covers a population of about 1.5 million. Many families have “just in case” boxes to make sure that medication is available, and the ambulance service can link in too.

For cancer centre in-patients, the palliative care audit showed that nine out of 10 symptoms improved during the patient’s stay, including pain, breathlessness, constipation and weakness, and nausea scores fell to zero by day seven. Multifactorial drowsiness persisted in some whose disease was progressing rapidly to death.

In England during the pandemic, specialist teams were in place. They have shown that they can facilitate discharge, support staff having difficult ethical and communication dilemmas, and support patients and families, but a Marie Curie survey of carers of people who died at home during the pandemic found that 76% said that their loved one did not get all the care and support they needed, 64% did not get pain management and 65% did not get the out-of-hours care.

This Bill arrives at a critical moment for improving care. In 20 years’ time, 100,000 more people will die each year in the UK. Demand is set to increase rapidly as our population ages and more people live for longer with multiple and complex conditions. The number of people dying with a need for palliative care is projected to increase by up to 42% by 2040. This cannot be left unaddressed, and the solution is at hand. I hope that the Government will finally recognise that they can improve care without increasing overall cost by adopting Amendment 47, to explicitly require the commissioning of specialist palliative care for local populations.

The NHS promised to support people from the cradle to the grave, and it can now realise that promise. I beg to move.

Photo of Lord Lexden Lord Lexden Deputy Chairman of Committees, Deputy Speaker (Lords)

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

Photo of Baroness Brinton Baroness Brinton Liberal Democrat Lords Spokesperson (Health)

My Lords, I thank the noble Baroness, Lady Finlay, for laying these amendments and pay tribute to her for her tireless work in the palliative care sector and in your Lordships’ House. I also thank Marie Curie, Hospice UK, Sue Ryder, Alzheimer’s Society and Together for Short Lives for their very helpful briefing.

Clause 16 provides integrated care boards with duties to commission hospital and other health services for those for whom they are responsible. While specific services are highlighted in the clause, there is still nothing for specialist palliative care as currently drafted. There should absolutely be a fundamental right to access palliative and end-of-life care and support services for everyone who needs them. It is vital to restate that palliative care and end-of-life care are not always the same thing.

Hospices, homes and special services at home help children and adults for more than just those last few days. However, far too many people already miss out on palliative care, as the noble Baroness, Lady Finlay, set out; estimates suggest that while as many as 90% of people who die may have hospice and palliative care needs, only around 50% will actually receive it. Like many others, I am afraid I know family and friends who were desperate to move to a hospice in their last few days but ended up dying in hospital. In my stepfather’s case it was because of the bureaucracy of the hospital—at the point at which they said it was possible to move him, they said it was too late.

If we can reduce unplanned and potentially avoidable hospital admissions, it would be considerably less distressing for the patient and their families and would also reduce pressure on our hospitals.

With people in the last year of their life in England accounting for some 5.5 million bed days, it is estimated that the total cost of these admissions is over £1 billion for our already pressed acute hospital trusts. I have a friend currently receiving end-of-life care who is also stuck in a hospital. The real problem is the lack of understanding of where and how the specialist services can be provided. That is vital, because otherwise people end up in hospital and cannot get out again.

During debate on a similar amendment in Committee in the Commons, the Minister of State for Health, Edward Argar, indicated that the Government’s view is that everything is covered by aftercare. As the noble Baroness, Lady Finlay, said, this is not aftercare. If you have ever seen the brilliant work of palliative care specialists, you will understand that it is real care at a vital time in people’s lives.

I mentioned Together for Short Lives in opening. I have a particular interest in children’s palliative and end-of-life care. One of the things that worries me most at the moment is that people often do not understand that respite care for families looking after young children with very serious illnesses and disabilities has been a vital way of ensuring that they can have some sort of break. They often work 18, 19, 20 hours a day, sometimes with help at home but often, during the two years of the pandemic, with no help at all.

Take the example of my local children’s respite centre, Nascot Lawn. The parents took the CCG to the High Court twice and won, but it closed down. It was not the first. Part of the problem we have with our hospices and other forms of provision is that they rely utterly on public fundraising. The last two years have been a particular problem. For children’s respite and palliative care, it is an absolute tragedy—far too many units are closing down around the country.

In addition, despite a version of the language used in Clause 16, on aftercare, having been in place since the 2012 Act, many CCGs do not currently commission sufficient specialist palliative care. Worse, in the case of Nascot Lawn, the entire onus was put on the local authority because, it was said, it was about personal care. One of my concerns is a muddle between personal care and aftercare, when all these children required specialist nursing.

It is vital that the funding element is looked at. The noble Baroness, Lady Finlay, is right that the NHS always proudly boasted that it was there for people from the cradle to the grave. Sadly, at the moment this is not true. It is the hidden gem of our public health system and we must find a mechanism to make it not hidden but apparent and something that everyone who wants and needs it can rely on in the future.

Photo of Baroness Masham of Ilton Baroness Masham of Ilton Crossbench 8:30 pm, 18th January 2022

My Lords, I thank my noble friend for this important debate. I strongly support the amendments which would ensure specialist palliative care, which should be available for all adults and children across the country should they need it.

Marie Curie suggests that while as many as 90% of people who die have palliative care needs, only 50% currently receive palliative care. Research reveals that of the 23 integrated care systems in England which have so far published their strategies, only six have identified palliative and end-of-life care as a priority area, as my noble friend has stated.

After long years when my husband had complicated conditions after a stroke, it would have been very helpful to have had some palliative care at the end. He died on a Sunday. The doctor would not come out. He died with me, in an A&E department. The doctor and nurse did their very best, but it was impossible to see his medical notes and the poor doctor was in desperation. It was a difficult situation as he passed away. This is one reason why a plan with some palliative care would be helpful.

I saw the struggles that the parents had when a young cousin of mine aged seven had neuroblastoma. They did everything they could. He was treated in Germany and England; they took him to the Children’s Hospital of Philadelphia, known for the treatment of neuroblastoma. He had spells in a children’s hospice in Yorkshire and, when in remission, went back to school.

Such parents, of whom there are many throughout the country, need support. I ask my noble friend Lady Finlay, a professor of palliative care, whether this support for parents or nearest and dearest comes under palliative care? I hope that the Government will see that palliative care should be included in this Bill.

Photo of Lord Howarth of Newport Lord Howarth of Newport Labour

My Lords, while we all treasure the hospice movement and revere Cicely Saunders and her disciples, the grim fact is that there are all too many parts of the country where hospices are lacking and, as the noble Baroness, Lady Finlay, explained, palliative care is limited and inadequate, or perhaps even non-existent. Of course, palliative care, available in every setting, must become a core responsibility of the NHS. We should not displace the hospices and the charitable ethos, but where hospices do not exist—mainly in poorer communities where fund-raising capacity is small—default provision should be made by the NHS. These amendments would secure universal availability of high-quality palliative care.

High-quality palliative care is, of course, not just a matter of technical skills in pain relief and so on. Dr Iona Heath, a past chair of the Royal College of General Practitioners, has written:

“The whole discipline of medicine has colluded in the wider … project of seeking technical solutions to the existential problems posed by distress, suffering and the finitude of life and the inevitability of ageing, loss and death. Sickness and death have gradually come to be regarded as failures of medicine, even by doctors themselves, rather than inevitable constituents of what it is to be human.”

At a round table on the arts and palliative care, dying and bereavement convened by the All-Party Parliamentary Group on Arts, Health and Wellbeing and chaired by the noble Baroness, Lady Finlay, Dr Viv Lucas—medical director of the Garden House Hospice, Letchworth—said that the role of doctors in this context is not to cure disease but to heal their patients. She said that this implies

“addressing the subjective experience of human suffering and facilitating a process of inner change—not about the technological doing to of the disease-orientated model but of being with, bearing witness.”

The hospice movement acknowledges creative work to be a vital human activity. Through the arts, we can transcend suffering, come to terms with our own mortality and enable our own healing. Artist Virginia Hearth has said:

“The arts offer us a way of making sense of the world and help us to define who we are and who we have been.”

There is an abundance of evidence cited in the World Health Organization scoping review of the benefits of the arts in end-of-life care, through opportunities for communication and emotional expression, reframing of the illness experience, and enhanced human connection.

Equally, the arts can help families watching their loved ones approach death and afterwards. At another APPG round table, the director of Grampian Hospitals Art Trust, Sally Thomson, read out a letter from a woman whose husband had been diagnosed with terminal cancer:

“To be given a terminal prognosis is devastating for both the patient and family. To take away your future, the opportunity to grow old and grey with your spouse and to watch your children grow and thrive. You lose your independence and your sense of self, your purpose and role in life. Yet in the midst of this suffering lies the Artroom. An oasis of positivity and fulfilment providing a different purpose. One of creativity and self-expression. It is a place where the self is rediscovered and allowed to flourish … It’s medicine for the soul and every bit as vital as drugs and chemotherapy. A life-fulfilling experience that has changed both our lives for the better.”

As Dr Rachel Clarke, a palliative care doctor, writes in her beautiful book, Dear Life:

“What I witness, over and over, in the hospice … is that there is nothing more powerful than another human presence … reaching out with love and tenderness towards one of our own.”

Photo of Lord Patel Lord Patel Chair, Science and Technology Committee (Lords), Chair, Science and Technology Committee (Lords)

My Lords, I support Amendment 47, to which I have attached my name. I thank the noble Baroness, Lady Finlay, for her brilliant introduction to these amendments, and the other three speakers who spoke so passionately. We have debated this issue several times, and the time has now come that we should be angry about it. The time has come that we should have palliative care and hospice care being made a part of the NHS as a commitment on the face of the Bill.

I shall read the words of a government Minister in Our Commitment to You for End of Life Care—The Government Response to the Review of Choice in End of Life Care. The Minister, Ben Gummer, then Parliamentary Under-Secretary of Health, said this:

“A universal provision of good care will make possible what we should expect from our health and care system - a universal expectation of a good death.”

He went on to say:

Cicely Saunders was articulating an ancient truth when she described her mission: that ‘we should see the last stages of life not as a defeat but as life’s fulfilment’. A good death - peaceful, dignified, reflective, compassionate, in the loving embrace of those closest to the dying person - is already a happy end for hundreds of thousands of people across our nation.”

The next line is important:

“In making this commitment, we make that promise universal, so that every dying person in England can live in anticipation of a good death.”

I ask the Minister: when that was written in 2016, was it an empty promise or is it likely to become a reality now?

We do not sufficiently value care for those for whom there is no cure. We do not value the short lives of children and young people who die prematurely and who will never be parents, let alone grandparents. Some Members here may have attended the annual reception held downstairs for parliamentarians by Together for Short Lives and other charities. They are attended by children and young people from the ages of three to 16, some using crutches, some using wheelchairs, some with tubes in their noses to supply oxygen, some undergoing IV treatment and some with IV pumps to relieve the pain. It brings tears to your eyes when you see them, but they all come with smiles on their faces, grateful for the care that they get—professional and dedicated care from professionals and volunteers.

So why do we rely for three-quarters of the funding for palliative and hospice care on the charity sector? Why is it that the Government fund only one-third of the care? Why, as the noble Baroness, Lady Finlay, said, do these charities have to sell cakes at village fêtes and second-hand books, toys and clothes for the money that they so fervently raise? Why can we not find the money?

Sue Ryder commissioned research into the total costs required to fund palliative and hospice care for every patient that needs it. They come to about £987 million a year. I should imagine that the transaction costs of the reforms that we are debating in the Health and Care Bill will probably cost several billion pounds. So it is possible for us to reorganise the health service at a cost of billions of pounds, but we cannot fund end-of-life care for those who are dying—children, young people and older people. We should be ashamed of that.

Photo of The Bishop of Carlisle The Bishop of Carlisle Bishop

My Lords, it is always a pleasure to follow the noble Lord, Lord Patel. I am pleased to give my wholehearted support to Amendment 47 and to Amendment 52, to which I have added my name, which compellingly requires the commissioning of specialist palliative care services in every part of England. Throughout my life and work I have often had the privilege of being present with families and communities, supporting people of all ages through the final chapter of their life, so I have seen at first hand the enormous difference that high-quality palliative care can make to their experience of dying, death and bereavement.

However, as the noble Baronesses, Lady Brinton and Lady Masham, pointed out, 90% of people might need such care, but as things stand at present only about half of them will receive it. What is more, it is all too often those in our most deprived communities who are dying without the help and dignity they deserve.

To that end, a compelling body of evidence has been provided by Marie Curie, the end-of-life charity, which has been mentioned several times already in this debate. Building on that evidence, this amendment will not only prevent many people with a terminal illness dying in pain but deliver significant cost savings to the NHS by reducing unnecessary hospital admissions.

I believe that the Bill provides us with a great opportunity to improve palliative care for everyone. As we have heard, Clause 16 explicitly mentions several services that ICBs are required to commission—for instance, maternity and dentistry—but as the noble Baroness, Lady Finlay, made clear, it makes no direct reference to improving care and support for people living with a terminal illness.

It is also the case that, as we heard, of those 23 integrated care systems that have already published their strategies, only six have mentioned end-of-life care as a priority. That in itself speaks volumes. Yet we have been reminded that, as a result of our ageing population, in 20 years’ time there will be about 100,000 more people dying each year. The need for good palliative care will increase rapidly in years to come. This amendment will help ensure that the demand is met.

This amendment has attracted a great deal of support from professionals and the public, as well as providers. I urge the Government to accept it as a vital part of our commitment to care for everyone from birth to death, and to ensure that all have the best possible end-of-life experience, regardless of where they live.

Photo of Baroness Meacher Baroness Meacher Crossbench 8:45 pm, 18th January 2022

My Lords, it is a great pleasure to follow the right reverend Prelate the Bishop of Carlisle. I give my very strong support to Amendment 47, to which I added my name, and Amendment 52. The key arguments have been extremely powerfully made by the noble Baroness, Lady Finlay, and others.

My main concern is to make it abundantly clear that I and everyone I know who supports assisted dying also want to see the highest possible quality of palliative care across the country—not some kind of patchwork, but universally. I, like all noble Lords, have witnessed wonderful palliative care but also what I might describe as substandard care of dying people. The difference to the patient and the relatives is unforgettable for everybody involved. I visited a beautiful hospice with a warm and professional atmosphere recently, but there were empty beds because it had not been able to raise enough money from whatever it was—jumble sales, et cetera. It is entirely unacceptable that hospices are expected to raise funds to provide their services.

As I said, I also support Amendment 52, which details the types of services that must be provided as part of this country’s commitment to providing accessible and excellent care. The inclusion of the definition of palliative care as provided by the World Health Organization would ensure statutory recognition for this most important aspect of healthcare.

Finally, we need to accept that top-quality palliative care must involve patients’ wishes being understood and respected. Patient choice is more and more accepted throughout the NHS, but it is most important at the end of life. Central to top-quality palliative care will be the right of patients ultimately to decide how much suffering they wish to bear and when they have had enough. The lack of control under the current law will inevitably undermine the patient experience of palliative care, however devoted the staff.

The great majority of dying patients will die naturally, even when assisted dying becomes lawful. However, the great majority of dying people will live and die better knowing that they will have some control when it really matters—when their suffering is no longer bearable.

Photo of Lord Hunt of Kings Heath Lord Hunt of Kings Heath Labour

My Lords, whatever view we take on assisted dying, I think that there is general agreement that the noble Baroness, Lady Finlay, deserves a great deal of support in her two amendments. The predicament that we find ourselves in is that the Minister will probably reject them and say that the Government will ensure that the NHS prioritises these services in the future. The trouble is that we have been here many times before, as the noble Lord, Lord Patel, said. He mentioned 2016, but in 2015 the Economist produced its last quality of death index, as far as I can find out, which basically said that the UK had the best palliative care in the world, but it was very patchy. I am afraid that the situation has simply not moved on.

So the question is: what should we do? Clearly, it is not going to get better if you leave it to the health service. It treats hospices dreadfully, with continuous late contract signing and short-term contract signing by bodies that should be able to agree three-year rolling contracts with those institutions. The lack of priority that is given suggests to me that, unless we take legislative action, we will not see any improvement at all. That is the quandary for us in terms of collectively agreeing a way forward that makes it clear to the NHS that time is up on its neglect of palliative care. We really must take action.

Photo of Baroness Hodgson of Abinger Baroness Hodgson of Abinger Conservative

My Lords, I too have put my name to these amendments, so ably introduced by the noble Baroness, Lady Finlay of Llandaff. Because this is the first time that I have spoken at this stage of the Bill, I remind your Lordships to refer to my Second Reading speech and entry in the register of interests for my experience and links around the topic of health. The hour is late, so I shall try to be very brief.

Although Clause 16 currently lists a number of services that the ICBs are required to commission, it fails extraordinarily to include palliative care. We have already heard that current estimates suggest that, although as many as 90% of people who die have a palliative care need, only 50% currently receive that care—only half. I find it somewhat horrifying that, as the noble Baroness, Lady Finlay, told us, a Marie Curie survey found that 64% of people who died at home did not get adequate care, with pain management.

Like others who have spoken, I know from personal experience of family members how hard it was for them to get the care they needed at the end of their life. I am sure that everyone here can share examples of exceptional local hospices, especially facing the challenges of the pandemic, that currently have to fundraise to be able to do the work to fill these gaps—as the noble Baroness, Lady Finlay, told us, they sell cakes. It is quite extraordinary. I pay tribute to the outstanding work of the hospices and the wonderful palliative care doctors for the amazing support they give to those who are dying and their families.

Although I recognise the Government’s concerns about overprescribing the list of services that integrated care boards should commission, it seems anomalous for the Bill to proceed with priority given to ensuring that ICBs commission maternity and other services but have no explicit requirement to commission palliative care services. I am sure that this was not the Government’s intention, but I am concerned that the current drafting implies that health services for people at the end stage of their life are less important than health services for people at earlier stages. Surely the end of life is one of the times when care is needed most. I find it extraordinary that we are even having this discussion.

The addition of these amendments offers a unique opportunity to ensure that nobody with a terminal illness misses out on the care and support that they need, both now and in the future. I look forward to hearing the Minister’s views on these amendments, which will help us to ensure that all of us have the end-of-life experience that we would hope and wish for when our time comes.

Photo of Lord Scriven Lord Scriven Liberal Democrat

My Lords, if we were having this debate about any other service in the NHS, people would be aghast. Can noble Lords imagine the response if we said that your access to dental treatment would be determined by the number of books sold; that your access to maternity services would be based on the number of jumble sales held; or that, ultimately, your access to ophthalmology would be dependent on the number of cakes and coffees sold at an afternoon party? These examples are no different from that of specialist palliative care, a service that is meant to be from cradle to grave. The unfortunate reason why the noble Baroness, Lady Finlay of Llandaff, has had to table her amendment, supported by other noble Lords, is that, for too many years, promises have been given but the services have not been delivered because the NHS does not commission parity of service across England.

I know quite a lot of people who work in the health service who are decent, hard-working and genuine, but the fact is that palliative care is seen by too many as an add-on and not central to the services they are providing. I do not blame them for that because, unfortunately, that is the behaviour that sometimes happens when the NHS does not have a mandate to provide specialist palliative care and people think that the local charity shop funds it. The noble Baroness has had to table Amendment 52 because we need to be clear about what this service is. It is not about just those last few days or weeks; it is not about just putting someone in a hospice. It is about giving psychological and medical care and support throughout a whole process to people with a life-threatening illness or who are at the end of life. This service needs to be commissioned against a clear understanding and definition of specialist palliative care.

I agree with many noble Lords: people across this country have waited far too long for access to specialist palliative care funded by the taxpayer. This does not mean that some of the charitable work would not continue, but such care should be a right and a service, funded by the taxpayer, which says that people will be looked after from cradle to grave.

Photo of Baroness Hollins Baroness Hollins Crossbench

My Lords, I applaud my noble friend’s continuing persistence and commitment in seeking proper recognition of the role of specialist palliative care within our health and care services. I speak with around 40 years of clinical and clinical academic experience, first in general practice but mostly in psychiatry, and as a past president of the British Medical Association. Cicely Saunders taught me as a medical student, and she inspired my interest in this area.

Other noble Lords have stressed the shortfalls—I will not repeat them—but we know too that certain groups face significant barriers in accessing palliative and end-of-life care. Marie Curie’s A Place for Everyone report found that this included people living in poverty, alone or with dementia, as well as people with learning disabilities. My own research in clinical practice has included a focus on end-of-life issues, including decision-making, for people with learning disabilities and autistic people. Most people with learning disabilities still do not get equitable end-of-life care, despite over a decade of inquiries and recommendations.

Personalising end-of-life care for everyone is in the NHS Long Term Plan. It must surely be enshrined within the duties of the ICSs. We have already heard about King’s College’s findings of a shocking lack of planning by the vast majority of ICSs. That is a problem; it cannot be left to chance. The truth also is that depression and anxiety are quite common among both those who are dying and those who are bereaved. From my perspective as a psychiatrist, I would say that we need palliative and end-of-life care to improve the experiences of both children and adults who are becoming bereaved. We know, for example, that adverse bereavement experiences in children, such as watching a family member dying in pain, are a predictor of difficulties in adulthood, in addition to affecting their educational achievements.

To achieve a comfortable death, it is imperative that the psychological distress of both the person who is dying and their nearest and dearest is understood and attended to, as well as any physical symptoms. This amendment should need no further discussion. Cicely Saunders would be horrified. I hope that the Minister will accept it. It would be a false economy not to go ahead with this provision.

Photo of Baroness Fraser of Craigmaddie Baroness Fraser of Craigmaddie Conservative 9:00 pm, 18th January 2022

My Lords, I support both these amendments, and I refer to my interests as laid out in the register as a trustee of the Neurological Alliance of Scotland and chair of the Scottish Government’s National Advisory Committee for Neurological Conditions.

There is evidence, as we have heard, that people provided with early palliative care and support in all settings, as is laid out by Amendment 52, achieve better outcomes and, as the right reverend Prelate the Bishop of Carlisle said, that it prevents unwarranted hospital admission. I would commend the Minister to look at the model in Scotland, where the Scottish Partnership for Palliative Care brings together health and social care professionals from hospitals, social care services, primary care, hospices and other charities to find ways of improving people’s experiences of declining health, death, dying and bereavement.

Perhaps what differentiates palliative care from just good care is the awareness that a person’s mortality has started to influence clinical and more personal decision-making. However, I beg to disagree with the noble Baroness, Lady Finlay. This is not about the fact that we are all going to die; it is about life. It is about the care of someone who is alive—someone who still has hours, days, months or years remaining in their life. It is about optimising well-being in those circumstances.

A major problem for people who need and would benefit from specialist palliative care is that they are often referred very late to such services or not referred at all, because such services are erroneously perceived by many other professionals, and the public, as relevant only at the end of life. Unfortunately, access to specialist palliative care is therefore not available to people dying with neurological conditions. Although there has been some progress, most people dying with terminal or progressive neurological conditions die under the care of generalist health and social care teams, in hospitals, care homes or at home. The recent research by Marie Curie, quoted by many noble Lords this evening, points out the patchy access to palliative care, and people with neurological conditions are overrepresented in not being able to access it.

There is a very high level of unmet need. As the noble Lord, Lord Patel, mentioned, we should be angry that end-of-life care is not available—and on behalf of people with neurological conditions, I am angry. For those who are receiving support from generalist teams, we know that hospital beds and suitable care packages are extremely scarce, especially as the health and care system seeks to cope with the Covid pandemic and its impact. As a result, we have a problem, and people are facing the end of their life without the support they require.

In a caring society, palliative care should be embedded into this Health and Care Bill. It should be a core service, available to all those who need it. I urge the Minister to support these amendments.

Photo of Lord Kakkar Lord Kakkar Crossbench

My Lords, I intervene briefly to support the amendment moved by my noble friend Lady Finlay. In so doing, I would like to put a question to the Minister. In the context of contemporary, 21st-century delivery of healthcare, how can it be justified that palliative care is not considered part of the continuum and has to be funded in a different way? How can it be that those specialists delivering palliative care are unable to integrate it into the broader considerations of delivery of healthcare in their institutions and systems? It seems completely counterintuitive that that continues to be the position in our country. If Her Majesty’s Government were minded not to support these amendments, it would be helpful to understand how they justify that position and justify differentiating palliative care from other services that are rightly fully funded by the state.

Photo of Baroness Walmsley Baroness Walmsley Co-Deputy Leader of the Liberal Democrat Peers

My Lords, I feel honoured to be a fellow Member of this House with the noble Baroness, Lady Finlay, because of her professional and political work in raising this issue before your Lordships.

I want to use a word that has not been used yet in this debate, and that word is “fear”. The noble Baroness, Lady Fraser, nearly used it when she said that people are scared. Anybody who has read the reports that say that only 50% of people who need palliative care receive it will feel fear: “Is it going to be painful?”, “Am I going to be able to bear it?” and, on the part of the carer and family members, “Is it going to be terrible for my loved one?”, “Am I going to be able to help them?”, “Am I going to be able to cope?” The physical pain is part of it, but, as the noble Baroness, Lady Hollins, said, the fear and the psychological distress make things a great deal worse. At a time when it is in our power to give people a good death, we are not doing it; that is a disgrace.

Photo of Baroness Merron Baroness Merron Opposition Whip (Lords), Shadow Spokesperson (Health and Social Care), Shadow Spokesperson (Digital, Culture, Media and Sport)

My Lords, I think it is fair to say that the debate today across your Lordships’ House has shown that it is impossible to understand how specialist palliative care can be regarded in any logical, practical or humane sense as something so different. I am sure that the Minister will do his very best to address that in his consideration of these important amendments.

I am grateful to noble Lords for making this debate possible by bringing forward these amendments and making sensitive, informed and often personal contributions to underline the need to ensure that specialist palliative care features in the Bill. I am particularly grateful to the noble Baroness, Lady Finlay, for setting out the fact that if we are to say that the NHS is cradle-to-grave, that must absolutely shape how we approach such services. The noble Baroness and others, including the right reverend Prelate, talked about inequality and the fact that, when we speak of specialist palliative care, inequalities are not just in the course of someone’s life but actually to the very moment they leave this world. That really had an impact on me, because that surely is an unfairness too far for us to just stand by.

Taking action could not be more pressing a need. We know that the UK’s population is ageing rapidly. The Office for National Statistics predicts that, in 20 years’ time, there will be twice as many people over the age of 85, while Marie Curie’s analysis for Cardiff University has concluded that the number of people needing palliative care will rise by 42% by 2040. This is a challenge to our society which will not go away. As the noble Lord, Lord Patel, said, we should be able to live our lives in anticipation of a good death. The right reverend Prelate spoke of the difference of witnessing a good death, as opposed to a death that is less than what it should be.

It is important to say that, even before the pandemic, experts at the Royal College of Physicians, the Care Quality Commission, the health service ombudsman and Compassion in Dying were all sounding the alarm on how those approaching the end of their life, and their loved ones, did not, in so many circumstances, feel supported to make the decisions that faced them and that it was impossible to turn away from. They did not know what choices were available, and, sadly, were not given an honest prognosis.

The amendments in this group offer dignity to the greatly increasing numbers who will need this care, and would bring in moral and well-evidenced measures essential to providing the tailored care that is needed in the final stages of one’s life. This includes sharing information about a person’s care across the different professionals and organisations involved in that care, and providing patients and their loved ones with specialist advice, 24 hours a day, every day of the week—which expert practitioners, including those at Cicely Saunders International, have been crying out for.

My noble friends Lord Hunt and Lord Howarth, the noble Baroness, Lady Finlay, the noble Lord, Lord Patel, and others underlined the work, role and contribution of the hospice movement, and also spoke about their incredulity at the reliance on charitable funding. Who in this Committee can be surprised at that feeling? I hope the Minister will be able to speak to that absolutely crucial point because, even before the pandemic, many hospices were suffering from poor decisions from clinical commissioning groups, poor practice, and a lack of support and recognition of the vital role that they play. That impacts on the individuals who so sorely need their services.

Marie Curie reported that 76% of carers who lost a loved one during the pandemic felt that they did not get the appropriate care that they needed. This is an opportunity to fix the problem. Every day, pandemic or none, the quality and personalisation of specialist palliative care will dictate how dignified and comfortable —or not—the end of a life will be, and how much of a burden will be borne by the carers and loved ones: whether, as the noble Baroness, Lady Hollins, reminded us, those left behind are adults or children. These amendments seek to get it right, and the feeling of this Committee could not be clearer. I look forward to the Minister’s response.

Photo of Lord Kamall Lord Kamall The Parliamentary Under-Secretary for Health and Social Care

My Lords, as we reach the closing minutes of today’s debate and reflect on the wonderful contributions from across the Committee, perhaps it is fitting that we also talk about the final chapter of life, as the right reverend Prelate the Bishop of Carlisle said.

I thank all noble Lords who spoke very movingly today, particularly the noble Baronesses, Lady Meacher, Lady Hollins and Lady Walmsley, the noble Lord, Lord Patel, and my noble friends Lady Hodgson and Lady Fraser, who spoke about their own experiences. I also thank the noble Baroness, Lady Merron, for pointing out the 42% figure, which is very important to recognise. I thank the noble Baroness, Lady Finlay, for the engagement we had prior to this debate and for her helpful engagement with our officials and the Bill team. I hope that will continue.

What is interesting about this is that when I was younger, we as a society found it very difficult to talk about death. I was once told by my parents that the British find it very difficult to talk about death, except in faith groups. It is interesting that, over time, as we have become an ageing society, we are talking, as a matter of fact, about death. We talk about our wills, financial planning, and planning for care at the end of our life. It is appropriate that we recognise this. The fact is that, nowadays, when we look at the hospice movement, we do not think of it as a quaint little service or a charity; we think that it provides an essential service to help someone at the end of their life, and we recognise the difference between palliative care and end-of-life care.

I hope that I can reassure the Committee that the Government are committed to ensuring that people of all ages have the opportunity to benefit from high-quality, personalised palliative and end-of-life care, if and when they need it. I also pay tribute to the noble Lords, Lord Howarth and Lord Scriven, for their contributions. The noble Lord, Lord Howarth, talked about the role that the arts play in helping those at the end of their life, which he has talked about in a number of discussions we have had on this issue. Like the noble Lord, Lord Scriven, he made the point that while you want to see the state do more, you do not want to push or squeeze out the hospice movement, as we need the right balance.

As the Government see it, the integrated care boards should take on, and are taking on, the commissioning of palliative care once they replace CCGs. That is because palliative care is already part of the comprehensive health service under new Section 3 of the NHS Act 2006, which lists the services that ICBs will be required to commission.

Palliative care is—as noble Lords have acknowledged —a broad term, describing the various elements of care provided to minimise suffering and optimise the quality of life for people with a life-limiting illness. Those elements of care include hospital or other accommodation, medical services, nursing services and other services for the care of persons suffering from illness. These are things that an ICB already has a duty to commission under new Section 3 of NHS Act 2006, inserted by Clause 16 of this Bill.

The right reverend Prelate the Bishop of Carlisle said that not all ICBs have been explicit about what they are doing in terms of commissioning palliative care. I will take that point back to the department, and I thank him for making me aware of it.

The Government’s concern is that by adding palliative care, and specialist palliative care, as a separate element of Section 3, we risk the unintended consequence in law that the existing services in Section 3 do not already include palliative care. Nursing services absolutely should include nursing services for people receiving palliative and end-of-life care, including specialist palliative care. Medical services absolutely should include medical services for people receiving palliative and end-of-life care, including specialist palliative care. This amendment therefore risks inadvertently implying that some services are not already captured or should not be covered in more generic terms, an outcome that none of us would want. I pledge to noble Lords that I will look at this in more detail.

I also assure the noble Baroness that ICBs will be required to have regard to the National Institute for Health and Care Excellence guidelines in their provision of services, as CCGs currently are.

The noble Lord, Lord Kakkar, asked what the Government are doing to ensure that best practice is followed and spread. NHS England will continue to support commissioners of palliative and end-of-life care services through their palliative and end-of-life care strategic clinical networks. These networks support the delivery of outstanding clinical care by ensuring palliative and end-of-life care is personalised for all.

I am deeply grateful for the work of the noble Baroness, Lady Finlay of Llandaff, in advocating for these important issues. I hope that I can reassure your Lordships that the Government are approaching them with the seriousness they deserve. Having said that, I hear the concerns from noble Lords—indeed, the word “anger” was used—and I hope that the noble Baroness and other interested noble Lords will continue to engage with the department and my officials between now and the next stage of the Bill. Even though I understand the sincerity and deep feeling of the noble Baroness in laying this amendment, I hope in the spirit of offering further conversations that she will feel able to withdraw it.

Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Deputy Chairman of Committees, Deputy Speaker (Lords) 9:15 pm, 18th January 2022

My Lords, I am most grateful to everyone who has spoken tonight and who shared their personal experiences and the passion and, indeed, anger that my noble friend Lord Patel referred to. Really, we are at the point where enough is enough. I would love to address every point individually. I greatly appreciate the Minister’s commitment in giving me access to his Bill team and to officials previously and I will take up that invitation with zeal because I will come back to this on Report. I can say now that I will divide the House on Report because enough is enough. We cannot carry on with the lack of action and the continued jumble sales, cake sales and everything else.

The noble Baroness, Lady Masham, asked me about the support for children. As the noble Lord, Lord Patel, pointed out, the cost of putting this right, if you work it out, is less than £20 per person across the population. It is really low. Yes, of course, it involves children. I would like to finish with a tribute to a little boy called Stevie. Stevie told me that he was going to die when his goldfish died. His goldfish died. He then asked that we promise not to give him any more injections. We said: “Fine, we will not give you any more injections, Stevie, we will keep everything controlled.” His third point was for his parents to come in. He made them sit down and hold hands across the bed and promise to never argue again. He died shortly afterwards.

For all those children, all those adults—all those thousands of people—who are dying every minute, we must make sure that we meet their promises, that we give them good care and that they have good symptom control and good psychosocial support as they are dying and that their families do as well. Enough is enough. On that note, I beg leave to withdraw the amendment.

Amendment 47 withdrawn.

Amendments 48 and 49 not moved.

House resumed.

House adjourned at 9.21 pm.