Health and Care Bill

Baroness Finlay of Llandaff Excerpts

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

Moved by

[Baroness Finlay of Llandaff]

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.

[Baroness Finlay of Llandaff (CB)]

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.

[The Deputy Chairman of Committees (Lord Lexden) (Con)]

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

--- Later in debate ---

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.

[Baroness Finlay of Llandaff (CB)]

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.