Access to Palliative Care Bill [HL]

Baroness Finlay of Llandaff Excerpts

Friday 23rd October 2015 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 palliative care lead for Wales, chair of the National Council for Palliative Care and chair of the National Mental Capacity Forum.

The only certainty is that every one of us will die. Nothing else in healthcare in the UK applies to 100% of our population. About three-quarters of us will need palliative care input at some level when we are dying. The UK seems to be a good place to die. It was ranked top of 80 countries in the recent Economist Intelligence Unit report. We can be unashamedly proud of our hospices and palliative care services. I am grateful to them all for their support of my Bill.

Let me explain why my Bill is needed, what it will do and why it will not incur costs but will free up resources in the system. The Parliamentary and Health Service Ombudsman’s report, discussed yesterday in the excellent debate of the noble Lord, Lord Farmer, shows all too clearly that provision of palliative care in England is unacceptably patchy. The Minister spoke of our transparency, and although he cited that many report good or excellent care, he admitted that a quarter of bereaved relatives reported that end-of-life care was not good enough. The memory of that experience remains in the minds of bereaved relatives and can blight their lives, particularly if they are children.

The ombudsman reported that in its casework:

“End of life care is, sadly, a recurring and consistent theme”.

Inadequate care is not a few isolated incidents. National audits by the Royal College of Physicians and Marie Curie, and the recent House of Commons Health Committee report on end-of-life care, and many others, all say the same: many places provide excellent care but provision is patchy and varies in quality, accessibility and reliability.

In response to the report More Care, Less Pathway, the Leadership Alliance for the Care of Dying People set five priorities of care in its report One Chance to Get it Right. The Bill is a chance to finally get it right for all. It meets the recommendations that appear consistently in reports, in particular the Health Committee report, What’s Important to Me: a Review of Choice in End of Life Care, which is awaiting the Government’s response, Ambitions for Palliative Care and End of Life Care, from a wide coalition of 27 lead providers and charities, published just this month, and the ombudsman’s report. It would narrow the widening gap in hospice provision between affluent and poorer areas. It would ensure access to hospice care for those with non-cancer diagnoses.

The NHS Confederation describes the NHS as “at a cliff edge” and points out the need to transform the way that the health service provides care. David Behan, reporting on the state of health and social care in England, points to the need for more collaboration between organisations and services; to evidence that person-centred care is better for the individual and can be more economical for service providers; and that safe services require the right staff and skills mix.

We all know what to do—we have strategies, working parties and reports galore—but we are just not doing it all the time, everywhere. Why not? The demands on clinical commissioning groups are great. They are well intentioned, but drowning. They need a clear, simple template to bring up the standard of services. Importantly, patients and their families, faced with all the fears and uncertainties of discovering that this is likely to be their final illness, need and deserve the assurance that their care will be good and that they will not be abandoned or failed in their hour of need, wherever they are, whatever the time or day of the week.

In 2008 we had the End of Life Care Strategy for England and a similar national strategy in Wales that we implemented pan-Wales. Both were reinforced by the NICE guidance on what high-quality palliative care should look like, including that patients’ physical and psychological needs are safely, effectively and appropriately met at any time of the day or night, including access to medication and equipment, and that those whose needs may benefit from specialist palliative care are also offered it at any time of the day or night.

In Wales, we developed a funding formula for palliative care services in 2008 to correct the wide variation in availability. We developed seven-day services, with specialist advice to any healthcare professional at any time of the day or night. We set a benchmark of provision of one actual bed, or a virtual hospice-at-home bed, per 15,000 population; a standard of responding rapidly to urgent referrals; out-of-hours “just in case” boxes for medication for patients at home; a single core palliative care IT record; and staff education initiatives. I am not claiming that we are perfect, but we know that patients consistently rate their experience of care from palliative care providers in Wales as over 9.5 out of 10 across domains of dignity, being listened to, having their concerns addressed and timely care. Indeed, scores of seven out of 10 or below set an alert.

In preparing for today I sent a freedom of information request to all 209 clinical commissioning groups. One hundred and twelve gave information about the number of beds they commission. Benchmarking against Wales on a population basis, 49 have fewer dedicated palliative care beds than Wales and 66 have more. The beds are probably there already, overall. Subject to data validation, clinical commissioning groups’ spend ranged between £15 and £10,504 per patient with palliative care needs, with an average spend of £886 per patient.

Regarding levels of services commissioned, there was wide variation—a true postcode lottery. Some 78% commission 24/7 specialist palliative care advice, but what happens to patients in other areas when staff get stuck and do not know what to do? Only 29 clinical commissioning groups knew how many people they had with palliative care needs, although the Palliative Care Funding Review showed that 0.75% of the population have palliative care needs at any one time.

Narrative from the bereaved and professionals, reported in Every Moment Counts, highlights failures in co-ordinating and personalising end-of-life care, particularly pain relief. Such care is, and should be, delivered by and large by generalists, but often they lack training and confidence to open up difficult conversations, to know how to respond appropriately to distress, or to manage pain urgently.

Actions for End of Life Care set policy aims for 2014 to 2016. It is packed with words such as “promoting”, “supporting”, “facilitating partnership” and “working together”. Its aims are laudable and it would deliver better care if they were all fully implemented. But we do not live in an NHS of plenty; we hear daily of cash-strapped services, of deficits, of failing to meet priorities. There are 15 million people living with one or more long-term conditions. Their admission to hospital is often avoidable.

Cicely Saunders Institute research showed that early integrated specialist palliative care significantly improved quality of life for patients with severe respiratory disease at no additional cost. Sue Ryder’s Bedfordshire partnership provides out-of-hours support, resulting in lower emergency hospital admission rates.

Cancer patients receiving palliative care are half as likely to attend the emergency department in the last month of life. Those with pain and poor care are more likely to have multiple emergency department visits in the last two weeks of life. The Nuffield Trust estimates that over that last three months of life the cost of end-of-life care in a hospice is around £550 per person, compared with £4,500 per person in a hospital—an increase largely due to emergency admissions that could have been avoided.

A new palliative care service for people with severe multiple sclerosis improved pain and care-giver burden, at a total cost saving of almost £2,000 per patient over three months. Coordinate My Care, developed by the Royal Marsden, has ensured that three-quarters of those who died while on the programme did so in the place of their choice, with an average saving of more than £2,000 per person.

Let me explain what my Bill would do. It would ensure that wherever a dying person is, whatever the time of day or night, whatever day of the week, they can receive high-standard care. How would it do this? It would do so by ensuring that commissioners commission a level of service for their populations to meet need. If you are a patient with complex needs and things become difficult, you cannot access a specialist service if it is just not there. You cannot expect staff to meet your needs if they do not know what to do and have no one to ask for help. You cannot access medication at home if your needs change, if there is no local way to get that medication urgently, and if the out-of-hours provider does not carry even the basics because they will not pay £4,504 to be licensed to hold an emergency stock. If you need equipment, you cannot wait days or weeks for it. Electronic palliative care communication systems promote better co-ordinated timely care, avoiding inefficiency and duplication. They need to be everywhere. My Bill would ensure co-ordination so that help is accessible, efficient and can meet needs. It is often said that good care costs less than bad care. Sensitive attitudes and caring behaviours by staff cost nothing, but they transform the quality of the patient and family experience.

Health Education England has indicated that it would welcome this Bill to ensure core education and training everywhere. Currently, only one-fifth of trusts have mandatory training in care of the dying. And research is essential to drive forward improvements; it is not a bolt-on.

There are around 500,000 deaths a year in England. Although three-quarters of people have an expected death, the way the deaths of the other quarter are managed can be improved by lessons from palliative care being applied to ways that family members are informed and supported, and how the critically ill and rapidly dying patient is managed.

The stories of people dying at home in distress through failures of commissioning have to stop. We know what to do but we are just not always doing it. At the end of the day, no amount of nice words will make commissioners ensure that they have in place the services to meet their population’s needs.

Why legislate for this and not for other services? It is simply because everyone will die. No other area of healthcare has 100% certainty, so this will not set a precedent. This is the time to make the good care of everyone who is dying a given. I beg to move.

--- Later in debate ---

[Baroness Finlay of Llandaff]

My Lords, I am most grateful to everyone who has spoken in this debate. They prepared for it carefully and highlighted the inequities in provision. I thank all those who support the Bill. I believe that patients and relatives out there, hearing that the Government do not support legislation that would drive up standards of palliative care provision, will be horrified. This has not been plucked out of the air. In Wales we have been doing this for seven years. It is a template as the result of a natural experiment between England and Wales. Through the Bill, we are trying to share best practice.

The Bill is indeed only skeletal. Since coming to this House, I have learnt that you do not put into a Bill what can go in guidance. The issues that have been raised by Peers over possible amendments I would certainly expect to see set out in guidance because that is the right place for them. The reason is that systems change over time, healthcare professional responsibilities change, and you do not want to be locked into something that becomes archaic.

This is not the Liverpool care pathway in another guise. In fact, I have to say publicly that we did not adopt the Liverpool care pathway in Wales because we predicted that it would run into trouble. We developed a slightly different, modified system of our own.

The principles of the Health and Social Care Act 2012 have to work out, and over time they will, but this Bill will not stifle innovation. In fact, it will make sure that there is innovation because research has set out in the Bill. It will make sure that those who provide specialist care have to keep up to date with what is going on and participate in research. No longer will they be able to duck out of it using all kinds of weasel words and excuses about wanting to protect patients from people who want to find better ways of care and thus improve it. Those people are called researchers who, like those at the Cicely Saunders Institute, have delivered most of the data to provide the transparency the Government want. I am greatly indebted, particularly to Dr Felicity Murtagh, Professor Irene Higginson and other colleagues there, who have provided me with an enormous catalogue of evidence to check out what is in my Bill.

As for consent and control, we already have the framework in place. No one should be treated against their wishes, so we have a framework that enables people to make advance refusals and statements of wishes. They can do it now, when they are well and long before disease strikes, and they can make changes if they change their mind. That is what the Mental Capacity Act 2005 is all about. It ensures that no one is treated against their will. I know that I now have an uphill struggle in trying to get it properly implemented, but it is a challenge that I take on willingly and I am humbled at being given the chance.

I am also alarmed at the thought of care being discriminatory against people on the basis of age and so on. As for people wanting to be cared for at home, I am cautious about anything that tries to put into legislation specific pathways of care because people change their mind. I have had patients change their mind about what they want and where they want to be in their dying moments—not about the place of care, but even about trying chemotherapy or asking for a second opinion about surgery. We have to be flexible all the time with our patients until they are dead because they may change their mind about what they want in the last few minutes. It may be a minor issue, such as whether the family is in the room or out of it, but those wishes need to be respected.

I am saddened that some have tried to link this Bill with the debate on the Assisted Dying Bill. The House of Commons looked at the proposal for physician-assisted suicide very comprehensively and has spoken very clearly. That Bill is unsafe and should not be brought back into either House of Parliament. It is actually an abuse of the House even to think about doing so. If people want assisted suicide, then go away and write a Bill that is safe, but do not saddle doctors in palliative care with it. They are the group that wants to provide better care and do not want to be involved in such a process. Those doctors also have the right to behave ethically and to do what they want for their patients; they do not want just to give in to demands.

I am also saddened that the Government have been so blunt; they will not even look at ways to improve the situation. We will watch the position over time. I hope that the Bill will have a Committee stage because I want to debate some of these issues further, and I also want transparency. But above all, I want every person dying in this country to be secure in the knowledge that they will get the care they need, but I am afraid that the response I have had today from the Government does not give me that assurance.

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