Access to Palliative Care Bill [HL]

Second Reading

Moved by

That the Bill be now read a second time.

My Lords, I declare my interests as listed in the register.

There are two certainties about life: we are all born and we all die. Everything else in between is variable. No one would countenance having areas in England with no maternity services, or only rudimentary midwifery without access to NHS obstetric care in the event of a complication, so why do we leave end-of-life care in some areas to services provided only through the voluntary sector, supported by fundraising and donations? Currently, around 470,000 people of all ages die each year in England; about three-quarters of them will not have a sudden death. These people of all ages—from babies right up to people over 100—need care with a palliative approach.

Let me explain what general care with a palliative approach is and what specialist palliative care is, and why we need both. It is the same as with other disciplines. For example, your GP manages your diabetes, but if it is complex or difficult to control, you see a specialist—a diabetologist. Palliative care is defined in the Bill as,

“care which is delivered to seek to improve the quality of life of persons with life-limiting illness or approaching the end of life, through the prevention and relief of suffering by means of early identification, assessment, treatment and management of pain and other problems whether physical, psychological, social or spiritual”.

In most cases, as a matter of routine, palliative care should be within the competences of clinicians generally, provided that they have had training in the fundamentals of such care. For many, a palliative approach is needed from diagnosis, even though death may be a long way off.

However, some people have complex problems. Crises suddenly arise and emergencies occur, meaning that they need more than their clinical team can offer. These people need specialist palliative care from doctors, nurses and allied health professionals with specialist training. Specialist services also drive up standards through teaching, being involved in research and providing other clinicians with advice. The courses that I set up from Cardiff have educated thousands of doctors around the world; they have also been replicated at universities in Europe and beyond, such as Australia and North America.

Palliative care runs alongside efforts to control disease. It addresses distress, pain and suffering. It is not a case of either treatment or palliative care; it is about balanced decision-making for patients. With early palliative care, patients live better and longer at no additional cost overall. Specialist services can now reach hard-to-reach groups, such as prisoners and the homeless, which were previously out of sight and out of mind. If these specialist services are not in place and available, you cannot be referred to them in a crisis and your clinicians cannot get advice on what to do.

My Lords, I congratulate the noble Baroness, Lady Finlay, on her magnificent overview of the background to the Bill and on her patience in waiting for an opportunity for it to be read.

For some years, I was the chairman of an independent hospital, which, unusually, contains a hospice within its property and is part of the same charity. I had conversations with the current director of the hospice and he is totally behind the Bill, effectively, to close the wide disparity of the attention given by different CCGs across England in the resources they allocate to ensuring that palliative care is available to patients 24/7. It was interesting to hear the noble Baroness’s example of the Welsh experience, from which we can learn.

Well-organised palliative care services not only give comfort to patients who need it but represent a saving to the NHS by reducing the expense of unplanned admissions. Furthermore, the well-structured arrangements make it easier for experienced palliative care doctors—of which there is certainly not a surplus—to give valuable training to their generalist colleagues. The noble Baroness has given the advantages of those pacts in rather greater detail.

Turning to the provisions of the Bill, Clause 1 provides a general statement of intent and is a useful link to previous discussions in this House and elsewhere. However, by itself, it has limited teeth and a former CCG commissioner tells me that the task is often given to a junior member of the staff to satisfy the department of the CCG’s good intentions without the CCG feeling it necessary to do much about it.

However, Clause 2 is the valuable core of this short Bill as it imposes on all CCGs the obligation to prepare and publish a strategy on providing for palliative needs, identifying the needs of adults and children and how those needs will be met, and the circumstances in which palliative care services apply. It will, I hope, ensure that all patients throughout England will be assured of well-established palliative care provisions.

On the position of the Government, their reaction to the 2015-16 Bill was disappointing. The then Minister’s view was that palliative care was,

“best tackled by clinicians, ideally together with patients, carers and loved ones”.—[Official Report, 23/10/15; col. 942.]

I agree, provided that the patient is within the responsibility of a CCG that has well-set-up palliative care facilities. However, if the patient is in the area of a CCG that is not well organised, the answer, I fear, is, “Well, tough”. That is not good enough.

My Lords, I echo the congratulations to the noble Baroness on her Private Member’s Bill, which takes us considerably further forward than the debate we have had over the past two to three years—indeed, for much longer. For far too long, patients across England have been victims of a system of palliative care that lacks not only consistency but the resources to help them.

Currently, there is no method of accountability to ensure that CCGs are able to serve patients to the best of their ability. The situation is begging for a catalyst that will both empower CCGs and hold them to account for the work that they do. I echo the points of the noble Viscount, Lord Bridgeman, about the CCGs giving junior staff the responsibility for demonstrating that they have achieved the service level. I will give some illustrations later.

The standard of variation between the lowest budgets allocated for some patients by CCGs and the highest is quite extraordinary. No patient deserves to receive care so lacking that it is not palliative care at all. As the noble Baroness, Lady Finlay, said, we all have experience of comparing and contrasting. I had experience of two people who died at almost the same time. One had a brilliant palliative care service, working well with the hospital, the community and the county council adult social services—and, indeed, as this was a young mother, with the psychiatric support required for her children who were about to become, and then became, orphaned. In the second case, the patient was stuck in a hospital that refused to say that they were at the point at which they needed palliative care at a hospice. When that moment was recognised, the hospital said that they were too ill to be moved. This blocked a hospital bed for two weeks when the most appropriate care for the patient would have been elsewhere, as well as costing the district hospital. That was about training— both previous speakers have mentioned training and support—and it is absolutely vital that there is training throughout the system.

My Lords, I draw attention to my interests as set out in the register. I applaud my noble friend’s persistence in introducing this very important Bill. I am particularly pleased to see Clause 1(b), which recognises the need for psychological support for the person and their relatives.

According to Hospice UK, most hospices face cost pressures and their efforts to improve and extend access, to palliative and end-of-life care to meet unmet need will be achieved only if local health and social care decision-makers play their part. If only death could be funded by the NHS on the same basis as birth. I suspect that one of the reasons that it is not is because we do not talk about death in our society in an informed way. We need much better and wider education about death so that healthcare staff and relatives are not afraid to raise the subject and that death is something that people think and talk about prior to its impending arrival.

Marie Curie, the charity providing expert care and support for people living with a terminal illness and their families, has highlighted that each year in the UK as many as 150,000 terminally ill people do not receive adequate care and support at the end of life. I encourage noble Lords to come to listen to Irene Tuffrey-Wijne, the world’s first professor in learning disability and palliative care, deliver the Marie Curie lecture in the House of Lords next Wednesday. I declare an interest as Professor Tuffrey-Wijne is a former PhD student of mine. She will be looking at the challenges faced at the end of their lives by people with learning disabilities. There are many reasons why access to high-quality palliative care may not be available, but the reasons are compounded for people with learning disabilities, on whom I will focus my brief comments today.

There are more than 1 million people with learning disabilities in England. This is an ageing population, which means that growing numbers of them will need palliative care. Public Health England estimates that around 3,400 people with learning disabilities die in England each year. For decades, concerns have been raised about the health inequalities faced by this group, and this inequality becomes even more serious within end-of-life care provision. There have been shocking cases of failure in care leading to avoidable deaths and poor-quality end-of-life care. The Confidential Inquiry into Premature Deaths of People with Learning Disabilities, which published its findings in 2013, found that the deaths of people with learning disabilities are often not anticipated, and are poorly planned for and poorly co-ordinated. The subsequent learning disability mortality review programme now aims to review all deaths of people with learning disabilities in England. Its recently published third annual report states that 71 adults with learning disabilities whose deaths were reviewed by the programme—that is 8% of the reviewed deaths—received care that fell so far short of good practice that it significantly impacted on their well-being or directly contributed to their cause of death. Reasons included a lack of co-ordination of care and poor-quality end-of-life care.

My Lords, I declare an interest as a patron of Mary Ann Evans Hospice in Nuneaton.

One of the privileges of my calling has been to accompany people in the latter stages of their lives, visiting their bedsides, preparing them in soul and spirit for the next stage of their lives, and watching over their bodies when death has finally come for them. Through it all, I have tried to support their loved ones as they have travelled this hard road, all the time admiring the skills, diligence and compassion of nurses and medics in hospitals and hospices. I have seen that there is such a thing as a good, and even a beautiful, death.

“Lord, lettest thou thy servant depart in peace”,

is an ancient prayer of a Jewish sage. Whether people pray or not, a peaceful death is surely a near-universal hope, deep in the human heart, and it is why I am very glad to support the Bill introduced by the noble Baroness, Lady Finlay. With other noble Lords, I pay enormous tribute to her unswerving commitment to excellent and equitable palliative care for every person at every time, in every place, as the noble Baroness, Lady Hollins, has just said.

Of course, it is to be acknowledged that there is much to rejoice in. It is now more possible for people to die in physical peace than perhaps at any other point in human history, especially in the UK with our global leadership in the field. The compassion and skill of palliative care teams are a marvel. Our hospices are phenomenal, and the way that they were generated and remain sustained by local communities shows the deep longing for a peaceful death by ordinary people, for themselves and for their loved ones.

Nevertheless, it seems self-evident that the existing provision needs strengthening in disciplined and systematic ways. The 2011 NICE guidelines are laudatory. They set a high standard but, as we have heard already, clear evidence has been marshalled by Marie Curie, the BMA and others that they are not being reached everywhere and by everyone, and there is more such evidence now than at the time of the predecessor Bill. Indeed, the proportionately few references to palliative and end-of-life care in the 2019 NHS Long Term Plan do not inspire confidence that they will be given the priority they deserve.

I speak as a generalist but, to me, it seems that the Bill will provide that priority—that it will turn the NICE guidelines, the Government’s 2016 national strategy on end-of-life care and the present NHS plan into actual practice. It will provide—if I may be so bold as to draw on medical terms—a detailed diagnosis of the deficit and a remedy to put right the gaps in provision that have already been noted in terms of geography, ethnicity, age, income, type of illness and so on. It will help to ensure that everybody has access to the help that everyone needs, everywhere.

My Lords, I thank and congratulate the noble Baroness, Lady Finlay, on introducing this Bill to your Lordships’ House. I commend her for her persistence on this issue and for the excellent introductory speech she has made. This Bill deserves to, and I suspect will, garner support from all parts of the House. It is only to be hoped that, on this occasion, the Government Front Bench will join the chorus of support; we shall see.

I am significantly out of my comfort zone debating England’s health policy in your Lordships’ House. I was a Member of Parliament in the west of Scotland for 13 years, for all but two of which we had a Scottish Parliament, and therefore devolved responsibility for health matters. I do not even have a wealth of anecdotes or experience to share with the House; I did not learn very much about health policy during that time. So why, noble Lords may ask, am I taking up precious time to make a contribution to this debate? In explaining why, I will make the one point I want to make.

For the past week or so, I have been preparing to make a contribution to a debate that took place yesterday on inequalities. During the course of my research, I came across an excellent document from Marie Curie, for which I understand the noble Baroness, Lady Finlay, has management responsibility. For those who would like to read it, the document is dated April 2015 and is entitled Equity in the Provision of Palliative Care in the UK: Review of Evidence. I thought I would find evidence of inequality in there and to my horror I did—in spades. Then, I noticed that this debate was taking place, so I did not deploy this argument yesterday but kept it for today. I am pleased to see that we have the same Minister today. She made an excellent contribution to yesterday’s debate and showed a significant degree of empathy for the issues being raised. But I am hoping that she has learned a lesson from yesterday, which I will ask her to implement today.

My Lords, I too welcome this Bill and congratulate the noble Baroness, Lady Finlay, on bringing it back to the House. I welcome the Bill because, if enacted, it should certainly improve access to palliative care for dying people. However, as has been said, the Bill does not include some of the provisions contained in earlier versions of the Bill as introduced in 2015 and 2016. The noble Baroness has acknowledged this and says that it is in the interests of getting a shorter Bill. However, if the Bill is to ensure the highest standards of care for those who need palliative care, these provisions need to be recognised in some form, whether in the Bill itself or, as the noble Baroness has suggested, in a code of practice.

The first of these provisions relates to supporting individual care preferences. Like the noble Baroness, Lady Brinton, I am disappointed that this latest version of the Bill does not include a duty on clinical commissioning groups to provide patients with support to meet their preferences in care, or support on advance decisions to refuse treatment under Section 24 of the Mental Capacity Act 2005, both of which I was very pleased to see in Clause 1 of the 2016 Bill. I believe these provisions should be embraced in any palliative care framework, for three reasons.

First, there is clear evidence that documenting care preferences through the process of advance care planning increases use of hospice and palliative care and prevents emergency hospitalisation towards the end of life. It increases patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives. The importance of clearly documenting care preferences was highlighted in the recent case of an unidentified clinical commissioning group against P. In this case, a nursing home did not agree with the withdrawal of artificial nutrition and hydration for religious reasons. The patient’s family had to go to court to have their loved one’s previously stated wishes respected. Documented care preferences—that is to say, putting advance decisions to refuse treatment in writing—would have avoided this tragic and stressful situation, as the patient’s wishes could have been honoured without her family having to go to court.

My Lords, the noble Baroness, Lady Finlay, is a very powerful advocate. As we have heard, the House wants her to do even more, but she has explained her strategy quite clearly.

I have never felt it appropriate to speak entirely from my own experience in your Lordships’ Chamber, but today I will. After all, we are all informed by our own observations and incidents from our own lives, although I acknowledge that emotion is not the best basis for argument. My remarks focus on support by palliative care services for the family and friends of a patient. I absolutely take the point about equality and equity made by the noble Lord, Lord Browne. As a family member and friend of someone who died recently, I have been lucky enough to have had that support.

The patient did not have immediate family and when the palliative care team visited, they were met with a small group of her friends who were all involved with her support. I am sure that they encounter a great variety of people, but among my reactions at that first meeting was how well they coped with a group of articulate professionals, who were not short of questions and, in the nicest way, demands. My strongest impression was how reassuring they were. We may have been professionals, including as it happens two from the medical world, but this was unknown territory for us. The anxiety among this competent group was very high. We all felt such concern for our friend, such anxiety to ensure the best care for her and such a feeling of helplessness as to how to go about it, as well of course as to what to expect in the progression of her disease.

I pay tribute to the wonderful Dr Lucy Bernard-Qureshi, nurses Nichola Brown and David Cofino-Gonzalez, and the Camden, north-east Westminster and Islington palliative care team. They treated their patient so respectfully. They addressed questions to her, before asking us, and never talked over her, even when it was very unlikely that she was at all aware of their presence. They seemed to have all the time in the world for us and our anxieties, as well as for her—although I am sure they did not. I believe the phrase “support for … relatives” in Clause 1(b) of the Bill should be construed very widely.