Health and Care Bill

Lord Lexden Excerpts

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

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

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

--- Later in debate ---

[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.

[Baroness Brinton (LD) [V]]

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.