Health and Care Bill

Lord Howarth of Newport Excerpts

Lords Hansard - Part 3 & Committee stage
Tuesday 18th January 2022 Lords Chamber

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

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.

[Lord Howarth of Newport (Lab) [V]]

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.”

[Lord Patel (CB)]

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.