Access to Palliative Care Bill [HL]

Baroness Finlay of Llandaff Excerpts

2nd reading (Hansard): House of Lords
Friday 14th June 2019 Lords Chamber

Moved by

[Baroness Finlay of Llandaff]

That the Bill be now read a second time.

[Baroness Finlay of Llandaff (CB)]

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.

It has been heartening to see such widespread support for my Bill from those providing palliative and end-of-life care, from other clinical services and from patients and relatives. They are all too aware of the current gaps in provision. Sadly, an estimated 92,000 people each year in England would benefit from palliative care but do not receive any at all, either from specialist palliative care professionals or generalists. The family suffers too: 83% of carers—around 400,000 people per year—suffer significant psychological morbidity. Some of them are child carers. Cicely Saunders, the founder of the modern palliative care movement, said that the way a person dies lives on in the memory of those left behind. When a child is not adequately prepared for loss and sees clinical services fail to respond because they are not available seven days a week, their trauma is compounded.

In May 2015, the Parliamentary and Health Service Ombudsman’s thematic report found six themes in failings in England, including,

“Not recognising that people are dying, and not responding to their needs … Poor symptom control … Poor communication … Inadequate out-of-hours service … Poor care planning … Delays in diagnosis and referrals for treatment”.

Last year, I published the results of a freedom of information request to all 209 clinical commissioning groups about their contracting, in particular for specialist palliative care. Only 29 stated the number of their patients with some level of palliative care needs. Some 163 CCGs commissioned seven-day admission to specialist palliative care beds, but the beds per head of population varied greatly. Some 83% commissioned seven-day specialist palliative care services in patients’ homes where out-of-hours services relied heavily on third sector hospice provision. The budgets for specialist palliative care ranged from £52 to £2,330 per patient per annum, but they correlated poorly with the clinical commissioning groups’ reported needs, a variation that could not be accounted for by differing demography or geography.

In 2019, the National Audit of Care at the End of Life similarly found that only 47% of hospitals have commissioned services to provide face-to-face seven-day palliative care. Less than half include end-of-life training in staff induction, and only 55% of relatives in the audit felt that staff communicated sensitively. Variations are evident by diagnosis, with cancer patients more likely to access any level of palliative care and inequities overall adversely affecting those of black, Asian and minority ethnic backgrounds. Older people, despite multiple co-morbidities, often have less access to palliative care. Those in more deprived areas are more likely to die in hospital and less likely to die in a hospice, even though the national trend is for more people to die at home, in a care home or in a hospice; that is, a shift away from hospital. In London, care home deaths are low, and more people have three or more emergency admissions in the last 90 days of life. These variations are laid out in Public Health England’s NHS Atlas of Variation for Palliative and End of Life Care in England. The atlas aims to reduce unwarranted variation and to improve health outcomes and value, but are the commissioners listening?

These inequities do not make economic sense, quite apart from being just plain wrong. Care aligned with patients’ wishes could potentially shift 10% of these hospital deaths—in line with patients’ wishes, and I stress that—freeing up around £75 million-worth of services for those who could benefit from hospital care. We know that our hospital system is breaking under the current strains. This type of cost saving from better palliative care with better access to pain relief has been reported on internationally by the Lancet commission in Alleviating the Access Abyss in Palliative Care and Pain Relief—An Imperative of Universal Health Coverage. The report clearly demonstrates that palliative care is an essential component of any comprehensive healthcare system.

Where people are cared for and die is influenced by local options. Good-quality community-based palliative care increases the chance of death at home, but that is not always possible or desirable, so appropriate and high-quality palliative care must be available in all settings. In Wales in 2008, a report led by Viv Sugar set out a national strategy. It required fair access to specialist palliative care. Its aim for 24/7 services everywhere was not affordable, so we settled for seven-day specialist services with 24/7 advice available to any healthcare or social care professional across Wales. This was underpinned by a simple funding formula that was developed with the support of the noble Lord, Lord Wigley. It distributed new funding of just over £2 per head of population. I do not claim that everything in Wales is perfect, but the improvements that we achieved have stood the test of time. This process led to my previous Access to Palliative Care Bills.

However, I have listened to the Government’s comments. This shorter Bill respects England’s different format for the NHS. It respects the autonomy of CCGs in decision-making. It only requires CCGs to publish a strategy covering the expected needs of adults and children in its area, how they will be met and the specialist services to be provided, with data collected to monitor progress. All the other details that were previously included in my other Bills can easily be put into guidance or a code of practice. This Bill provides the legislative framework required to ensure that recent government initiatives such as the Marie Curie “Daffodil Standards” for general practice and the Ambitions for Palliative and End of Life Care framework, established through a coalition of a vast number of providers in England, are met. They require each person to be seen as an individual. Each person gets fair access to care and their comfort and well-being are maximised; care is co-ordinated, all staff are prepared to care and each community is prepared to help. The concept of compassionate communities, programmes with volunteers and many hospice outreach service contributes, but the core clinical services must be commissioned to meet need, working across administrative boundaries.

The CCG strategy should cover community, hospital and hospice with in-reach to nursing homes, prisons and other places of care. The specialist palliative care team needs to become involved early in order to work to relieve pain and suffering, supporting and working alongside other clinical services as well as providing care for those with complex needs. CCGs should commission services on a seven-day basis, because disease does not respect the clock or the calendar.

I hope that the Government will come to see that this Bill would help to deliver better care tailored to those in need. We know what to do; we are just not doing it for everyone who could benefit. The Bill would enable the realisation of the NHS Long Term Plan, which states:

“With patients, families, local authorities and our voluntary sector partners at both a national and local level, including specialist hospices, the NHS will personalise care, to improve end of life care”.


I beg to move.

--- Later in debate ---

[Baroness Finlay of Llandaff]

My Lords, I am most grateful to all noble Lords who have given up their Friday to speak in this debate on the Bill. As the Minister said, this touches us all personally. The accounts from the noble Baronesses, Lady Hamwee and Lady O’Loan, in particular brought a lump to the throat of many of us and exemplified the importance of excellence in care for everybody. There is only one chance to get it right. You cannot have a re-run; you cannot have another go.

Many noble Lords, including the noble Viscount, Lord Bridgeman, the noble Baronesses, Lady Brinton and Lady Hollins, and the right reverend Prelate the Bishop of Coventry addressed the fact that the Bill would close a gap. The right reverend Prelate spoke about peace at the end. I reassure him that spiritual care goes way beyond religious boundaries. It is striking how many people profess to have no faith at all but actually seek some kind of solace through faith at the end when they are facing their own existential crisis. As the noble Baroness, Lady O’Loan, pointed out, good care has to be holistic.

The noble Baroness, Lady Meacher, pointed out the opportunity cost of not providing good palliative care. While I understand the amount that the Government are doing, they are not adequately addressing the opportunity costs that are being missed. I am afraid that they are plugging small gaps without having an overall national strategy. Yes, education is going on, but there is still too little, particularly around communication skills.

Several noble Lords asked why the reference to the Mental Capacity Act was not on the face of this Bill. We already have that in legislation, and I was advised that it was repetitive to put it in this legislation because that Act applies to everybody and provides provision for advance care planning and legally binding advance decisions to refuse treatment. Legislation does not in itself make sure that everybody complies. It is there, and it is giving a strong message. It is educating and upskilling professionals who will make sure that things happen properly, particularly around advance care planning.

I wish I could share the Government’s optimism about personal health budgets. I am worried that people who are suddenly in a crisis and in complete turmoil may find it very difficult to access the services that they would want to buy, particularly if those services are just not provided in their area. I am still not convinced that personal health budgets will solve the problem. As the noble Baroness, Lady Brinton, pointed out, A&E is not the place for the predicted death of either children or adults. However, I must pay tribute to A&E departments, which deal with death day in, day out. They do it remarkably well and in the most incredibly difficult circumstances. In Wales we have actually put in place an ambulance service lead on end-of-life care to help upskill all the paramedics and ambulance crews, because they are often the ones who arrive at the scene.

I was asked about research. There is a difficulty with metrics. At the moment we measure death and disability in our national metrics; we do not measure pain and suffering. The Lancet Commission has underlined the importance of developing appropriate metrics against which we can measure what we are doing. Research is absolutely fundamental, and with all the Brexit negotiations I am concerned that funding may become more difficult. Again, I was advised that, to give this Bill a chance of moving forwards, I should take some of the details off the face of the Bill and allow them to go into a code of practice. Of course, I would hope that a code of practice to go along with it would become mandatory.

In my last moments I will address the overwhelming courage of Chris Gard and Connie Yates, who have taken their deeply traumatic experience forward and have wanted to ensure the right to try. They have done it with phenomenal dignity. Along with the noble Baroness, Lady Jolly, I have met them on several occasions. This Bill would be an appropriate place to put the requirement for access to mediation and the right to try, as has already been referred to. Indeed, many people facing the end of life and disease progress are desperate for a right to try and will say, “Even if it does not benefit me, I want to enter a trial of some sort because the results will benefit other people”. People are phenomenally generous when faced with real difficulties themselves.

I am very grateful to those who have highlighted the problem of children, because they have often been overlooked, as the noble Baroness, Lady O’Loan, pointed out. On average, one in 30 children is bereaved of a parent or relative. I remind the House that that means that one in 10 of all schoolchildren has suffered a major bereavement, because there are bereavements beyond those of parents and children. Again, it is in schools and so on that we need to have in-reach from specialist services to upskill teachers to cope, particularly when a whole class is bereaved. That happens, sadly, all too often.

The current bereavement services for children are there in the voluntary sector, and they are overwhelmed. They are coping with only the tip of the iceberg. That is the problem with the voluntary sector. On the investment to which the Minister referred. I remind her that Hospice UK data shows that the voluntary sector is now struggling, is having to cut back and is having to delay expansion and improvements to meet clear need even in the patches where we have voluntary sector hospices, because they are finding it so difficult to bring in the funds to meet the needs that they identify.

So, while all the Government’s initiatives are to be applauded, and many services around the country and many thousands of patients are getting excellent care, we should not rest until we know that it is really available for everybody. We should not accept black holes. I am disappointed by the Government’s response, but I am heartened by the support that I have had from around the House. I beg to move.

Bill read a second time and committed to a Committee of the Whole House.