Health and Care Bill

Committee (3rd Day) (Continued)

My Lords, in the next group of amendments, the noble Baronesses, Lady Brinton and Lady Masham, and the noble Lord, Lord Howarth of Newport, will be taking part remotely.

Amendment 47

Moved by

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

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.

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

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.

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.

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:

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.

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.