End of Life Care
To ask Her Majesty’s Government how they intend to ensure that Clinical Commissioners respect the undertakings made in Our Commitments to You for End of Life Care: The Government Response to the Review of Choice in End of Life Care.
My Lords, I thank the Government for having provided time for this important debate and declare my interests in palliative medicine, particularly as national clinical lead for Wales from 2008, chair of the National Council for Palliative Care and a vice-president of Marie Curie.
Cicely Saunders founded the modern hospice movement 50 years ago, with activity underpinned by evidence. It was she who said:
“You matter because you are you, and you matter to the last moment of your life. We will do all we can to help you, not only to die peacefully but to live until you die”.
That scientific evidence has shown that morphine, given regularly at the right dose at the right time, can safely get on top of pain. Sometimes, other effective interventions, ranging from expert use of modern sophisticated analgesics to nerve blocks, are needed. Acute breathlessness and acute anxiety can now be managed. Open, calm and honest conversations with patients about their illness, their needs and what lies ahead can transform their experience as death approaches.
Care of the family, including children deeply affected by a person’s death, is core to good person-centred care. It means thinking ahead, planning for “just in case” rather than simply responding. Those facing the uncertainty of life-threatening illness must not feel abandoned, must know that continuity of care at all times will meet their needs, and that unexpected crises will be responded to urgently. Disease does not respect the clock nor the calendar. Help and support must be available whenever and wherever people need them.
I have had thousands of difficult, honest conversations with patients, listened to the grief and pain of parting, to fears and to deep, unresolved guilt. I have seen how those in despair can live well again with appropriate care, often amazed at finding meaning again in their lives when they had given up all hope.
However, it is not easy. Palliative care is not like taking a course of antibiotics that either works or does not. It requires constant review, carefully helping people as they adapt to their new reality. It means “being there”, and patients knowing that help is there for them at home and not just being rushed to A&E.
Relatives who have experienced gentle dying are not usually moved to tell the world of their reassuring experience, but a small number of bad deaths make headlines. Media coverage dramatises difficult situations as “human interest” stories. They sell papers, but they also paint a misleading picture of death and dying normally. Bad care should never happen. The failures identified in the ombudsman’s 2015 report will be addressed only by adequate service provision, tasked with driving up improvements everywhere.
Palliative care has gradually become mainstreamed. In 2008, the Department of Health’s End of Life Care Strategy set England’s plan to improve end-of-life care. A similar planning group, led by Viv Sugar, set out Welsh goals for palliative care services. This created a natural experiment.
In Wales, an investment of £6 million per annum recurring allowed a funding formula to be developed that targeted services to plug gaps and ensure fair access to specialist palliative care wherever a person lived. It has provided face-to- face specialist palliative care across seven days a week and consultant advice to all health and social care professionals on a 24/7 basis. Services into hospitals are proportionate to the number of beds and, across the community, proportionate to the population size. Recent outcome evaluations in Welsh hospitals suggest that this is bearing fruit and that communication is better managed. Pain is being managed. In the last five years, more than 8,000 patient and family evaluations have shown outstanding ratings of their specialist palliative care experience overall. The average is high.
In any one year, 0.75% of the population overall will have palliative care needs. Death is ubiquitous and inevitable. In 2015, almost half a million people died in England and more than 33,000 in Wales.
Reports since 2008 include the NICE quality standards, an independent funding review and One Chance to Get It Right. Then in 2015 a collaborative of providers published six high-level goals in Ambitions for Palliative and End of Life Care. In 2015 Claire Henry, commissioned by the Government, published What’s Important to Me—A Review of Choice in End of Life Care. People have clearly stated that they want the right care, at the right time, from high-quality, well-trained staff. They want honest conversations, not unrealistic expectations. They know that disease does not respect the clock or the calendar. People want to be involved in discussions about their care; they want to make sure that staff know their wishes and that all needs—physical, emotional, social and spiritual—are addressed. People facing dying want to know that their families are supported and involved.
The Government’s response last year addressed much of the report, showing synergy with the main themes of both the choice review and the ambitions framework. However, the review called for an investment of £130 million. The Government declined, stating instead that end-of-life care was to become a core priority within the NHS transformation programmes:
“Improvements to end of life care should not occur in isolation. They should be threaded through the most effective New Models of Care that will deliver the new, transformed NHS. Sustainability and Transformation Plans (STPs) should fully take into account the contribution that sustainable, efficiently designed end of life care services can make to achieving better outcomes for dying people”.
I was unconvinced that this was happening, so in 2015 my researcher and I analysed responses from all 209 clinical commissioning groups to a freedom of information request about their specialist and other palliative care services. We found wide variations across England in the core data that they collect and a disparity in the responsibility of service provision between clinical commissioning groups, trusts and local voluntary sector hospices. The decision-making devolved down to clinical commissioning groups suggests that palliative care is not being considered as a core service in some parts of England, despite much evidence of its cost-efficacy.
Two important randomised controlled studies of specialist palliative care input have shown that patients have a higher quality of life and better moods. Not only do they live better, but they also, surprisingly, live longer with good palliative care support, at no additional overall cost. Good palliative care saves money.
The Government’s vision in 2009 created Dying Matters to empower people to talk, live and plan. A national conversation started with a focus on wills, how to get help, and how to ensure that someone can speak up for you if you cannot. Compassionate communities are growing, encouraging people to look out for each other, do what they can, and not shy away from those who are ill or bereaved.
But then came the sustainability and transformation plans. Preliminary analysis looks grim: they do not reflect the Government’s stated intention. Almost half make no mention of end-of-life care at all, or only transiently, and only six of the 44 STPs actually embed end-of-life care as a strategic priority.
Public Health England has just published guidance on Cost-effective Commissioning of End of Life Care. It is a worthy review, but it does not provide a clear template to plug gaps. The Government’s commitment of last July was that,
“every person nearing the end of their life should receive attentive, high quality, compassionate care, so that their pain is eased, their spirits lifted and their wishes for their closing weeks, days and hours are respected”.
However, gaps remain. Today’s King’s Fund report shows the impacts of financial constraints on patient care, particularly in the community. So I respectfully ask the Government whether they will now look again at a framework funding formula that works in conjunction with voluntary sector providers—who do so much—to make sure people everywhere can access the care they need rather than depend on the lottery of commissioners’ views.
My Lords, it is always challenging to follow the noble Baroness. Her knowledge and expertise are well heard in this House, and are informed by a direct, personal engagement in the front line that is outstanding. We all pay tribute to her on both scores.
We are dealing with a gigantic cultural and social problem. Modern, high-tech society has many benefits that we spend a lot of time debating but it has many casualties, too. Life goes faster and faster, pressure on families is greater and greater, and it is more and more difficult for them to provide the care which might have been more readily available in a more steady age when life was less frenetic. This is a reality we must face.
However, we must also be very careful about loose press reporting. Sometimes the pressure on staff trying to deal with these issues is immense. Perhaps understandably, sometimes things that go a little bit wrong can be played out of all proportion. Anyone who has been through a situation of this kind within the family knows very well that things are not always perfect. People are human and sometimes cannot live up to their own standards because the pressures are too great. So we need a great deal of understanding about the pressures being borne, carried on behalf of society.
I just want to raise several points. First, I am a vice-president of Hospice at Home West Cumbria and was previously president. I cannot speak highly enough of the quality and commitment of the volunteers and staff alike, and what they do not only in their immediate work but in relating to the wider community in a really remarkable way, drawing it into a sense of responsibility for the hospice at home movement and feeling that it is their movement to sustain.
Are we yet doing enough in our training and preparation of doctors for their profession to ensure that the care of the elderly, vulnerable and dying is central to their concerns? All of them will face this issue, and some will specialise in it. It should be a central part of medical training and preparation to take into account the needs of the dying and the elderly, and how that can be covered. Demography demonstrates the high and growing proportion of our population that this will affect. It is sheer madness not to make this a priority in the profession at all levels.
Still there is too much evidence of postcode lottery in the provision of services but the sort of thing that worries me when talking about the work of Hospice at Home West Cumbria, for example, is that it can have remarkable results when the health service co-operates and they work together.
But does the health service, as a matter of course, take that expertise and insight into consideration in the preparation of its plans, not only nationally but locally, and join all that up as part of the whole process of developing its work?
At the moment it is alarming that one in three health and well-being boards does not consider the needs of dying people when assessing health and care needs in its local population. Almost six in 10 health and well-being boards do not include the needs of dying people in their key strategies. More than one in four—27%—of clinical commissioning groups do not have a strategy for addressing end-of-life care. More than seven in 10 do not have a strategy for children and young people with life-shortening conditions.
These are alarming statistics. A tremendous amount has to be done. The Government have stated their intentions but the road to hell can be paved with good intentions. What matters is what is actually done and what resources are actually arriving to give effect to the intentions that are expressed.
My Lords, I congratulate the noble Baroness, Lady Finlay, on securing this very important debate. My contribution is specific and restricted entirely to children who have life-limiting conditions, in particular those under the age of three. Young children with complex medical conditions receive no support from the state. They may require specialist equipment. They may need adapted buggies, beds or cots. There will be considerable strain on the family, especially if there are other siblings. However, there is no support for these hard-pressed families.
In January, the BBC’s “Spotlight South West” featured the case of a two year-old boy from Devon with Tay-Sachs disease. This arose from his family not having the financial means to secure the specialist vehicle they needed to transport him in a wheelchair. Because he is under three, his family are denied access to the disability living allowance mobility component. Had they been able to claim this benefit, it would have enabled them to achieve some simple but important objectives, such as going to the park. Most families take this activity for granted, but this family were not able to enjoy the fresh air, feed the ducks or watch the birds.
In 2016 there was a 61% cut in funding for children’s palliative care charities from upper-tier local authorities, despite these having a statutory duty to provide short breaks. However, their annual statement of provision gives no detail on this particular provision. Short breaks provide important relief for families. The lack of a break could lead to family break-up, and other siblings may suffer.
Adult hospices receive 33% of their funding from clinical commissioning groups but children’s hospices receive only 25% funding. Some CCGs do not fund children’s hospices at all, on the basis that their ethos means they are unlikely to turn children away. It is, as the noble Lord, Lord Judd, said, a postcode lottery. Best practice is to be found in Luton, where the NHS, local authorities and GPs are collaborating. Some areas do nothing, not recognising the problems that these families face. Can the Minister say how the Government will support CCGs to recognise the benefits of funding vital, cost-effective, non-clinical child palliative care services for the whole family to enable them to cope more effectively with their situation, and thus deliver both short-term and long-term savings for CCGs?
The charitable organisation Together for Short Lives has been pressing the DWP to change the DLA rules so that children under three who depend on access to a vehicle for a variety of reasons can access the mobility component. They are already recognised by the DfT as having specific mobility needs through access to the blue badge parking scheme—so why not by the DWP?
The families of children with very complex needs deserve support. They wish to do the very best for their child’s short life—to make the most of their time with their child and have happy memories to comfort them when their child has died. This is not just about the quality of life for such children; it is also about the quality and dignity of their death.
The number of children and young people with life-limiting conditions is increasing. Children’s palliative care charities want to provide vital care for every child who needs it, but state funding is not keeping pace with demand. A 2015 report showed a 50% increase over 10 years in the number of children with life-limiting conditions in Scotland—from over 4,000 in 2004 to over 6,000 in 2014. If this was replicated across the UK, the number of children with life-limiting conditions could be much more than the current estimate of nearly 50,000.
The number of these children has never been monitored. As a result, the Government, the NHS and local councils are failing to plan accurately and budget to meet the needs of children and young people in this category. What action can the Minister commit to in order to better understand the number and needs of children with life-limiting and life-threatening conditions? I look forward to his response.
My Lords, I too pay tribute to the noble Baroness, Lady Finlay, and I look forward to some exciting debates about digital and dying matters.
Doteveryone, the charity that I founded to make the internet work for everyone, spent six months last year looking at how technology can help improve the care of people with life-limiting conditions. Even in the complexity that inevitably plagues the end of life, dramatic improvements can be made to people’s lives through relatively simple use of digital, thereby—to answer the challenge from the noble Lord, Lord Judd—allowing for more time to live and more time for human care.
I shall share three of Doteveryone’s recommendations. First, on the problem of NHS legacy technology, as many noble Lords will know, each trust is supported by hundreds of systems. On average, each hospital has over 600 IT systems that may or may not usefully speak to each other. Much communication still relies on fax, and a small number of big suppliers dominate essential services such as booking appointments. So the gap between innovation and legacy continues to grow, leaving patients and professionals to work with technology that is not fit for purpose.
Resourceful people, however, always find ways round these problems. Doctors message each other using WhatsApp, and I have found hundreds of people who have commissioned apps to solve small bits of the clinical problems. Doteveryone’s research has shown that carers and people with multiple long-term conditions therefore become full-time administrators, supporting the NHS with unpaid work to manage these information flows, appointment bookings and all the other things that follow from bad IT. This is entirely to the detriment of healthcare outcomes. The burden falls disproportionately on those who can least afford it.
Doteveryone built a prototype for a collaborative healthcare record that allows people, carers and clinicians to see the same data and information. This was not a tortuous project: it was a quick, responsive and cheap one based on hundreds of research interviews with people at home and in care homes, hospices and hospitals. There are, however, not enough of these ideas and services out there, and not enough that are being allowed to scale through the system.
As one person we met—Joe, who is living with severe heart conditions—told us:
“I panic when I am listening to doctors and I don’t hear it all … I need a better way to record our conversations or make sure I always have someone with me”.
There can always be someone with you: they just do not always have to be a person.
Our second recommendation was around wi-fi. We need beautifully designed wi-fi in care homes. I use that word “beautiful” carefully. Some 70% of care homes have no wi-fi at all; and 80% of people living in care homes say that they are scared to leave their room. How brilliant would it be if by having better wi-fi across the estate, they could chat to someone just down the corridor, or even better perhaps, back home or even in another country? Sometimes, simple tech solutions can provide imaginative leaps for problems that people are not seeing.
The overarching point of all this is that there is so much opportunity to implement technology that enables people facing the most difficult of times with more hope, more joy and, crucially, more time. Infrastructure and services are vital, but so is experience, imagination and skills within the system.
The third recommendation we made is that we must make digital skills a priority or we will have no chance of meeting the mammoth social challenge we face. This is not about learning to code but about a digital understanding that enables you to make better decisions.
I was at my grandmother’s funeral yesterday. She was lucky: she lived until 96 with plenty of family and support around her. But even she faced 12 months of hideous loneliness when my grandfather died. Despite being able to stay in her own home until the last few weeks, she was desperately unhappy in the very well-run local care home she moved into. Along with quantities of cheese, the only thing she took pleasure in was seeing videos of her grandchildren and great-grandchildren on my iPad. We recorded messages from her and to her, and her face would light up. This is not a complex technical solution or a crazy innovation. It is a humane and obvious use of digital.
I urge the Minister to look at older people with multiple conditions as superusers of the NHS. Improving service delivery for them at the end of life will lay the foundations of an improved service for everyone. End-of-life care is not a specialist clinical issue but a building block for a better NHS.
“The medical side of a patient’s health is not always the key to treating them”.
So said a medical student recently, describing what he had learned from a leading end-of-life care specialist at St Benedict’s Hospice and Centre in Sunderland. Another medical student said:
“Palliative care is not just end-of-life care. It is a very holistic approach which supports the patients’ needs very well”.
End-of-life care must be about the whole person, so the Government’s commitments in this regard are to be welcomed. While The Government Response to the Review of Choice in End of Life Care does not explicitly mention the word chaplain, it is clear that the contribution of chaplains is central to holistic end-of-life care. I am sure that all in this House will join me in paying tribute to chaplains in the NHS and independent hospices for the work they do in walking alongside people at the end of life.
Well-resourced chaplaincy, involving paid professionals and trained volunteers, plays a role in meeting every part of the commitments detailed here. But I want to focus particularly on the commitment that says that people should,
“have honest discussions about your needs and preferences for your physical, mental and spiritual wellbeing, so that you can live well until you die”.
Spiritual well-being is neither an add-on nor the monopoly of these Benches. No matter who you are, end-of-life care would be incomplete without space for reflection on the meaning of death and life. This point was underlined forcefully to me by the staff, medical and administrative, of St Cuthbert’s Hospice in Durham when I recently visited there. They also raised with me the struggle they face in providing care to those of specific faiths. In particular, they wanted to highlight the difficulty of resourcing end-of-life religious care for those from smaller faith communities. Rightful consideration that everyone has a spiritual well-being must not crowd out an attentiveness to the particularity of one’s religious convictions, and the requirement on clinical commissioners to provide religious care to those of all faiths.
A family coming to terms with a diagnosis recently got in touch with an NHS chaplain in my diocese to express how much of a comfort it is to know that she is simply there for them. It struck me how vital it is that the NHS makes sure that in each and every context where end-of-life care takes place, there is someone there for them. Action 5 of the report states:
“We will ensure we have the right people with the right knowledge and skills to deliver high quality personalised care”.
This makes it clear that it is the responsibility of the NHS to provide chaplaincy services. In partnership with faith and belief groups, yes, but the responsibility for adequate religious and spiritual care lies with the NHS. This is a point underlined in quality statement 6 of the 2011 NICE quality standard for end-of-life care for adults, which requires that:
“People approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences”.
The NHS chaplaincy guidelines 2015 also underscore the importance of NHS chaplains in providing pastoral, spiritual and religious care. I therefore look forward to hearing more on how the Government will ensure that clinical commissioners will provide well-supported chaplaincy for those of all faiths and none as part of integrated care for those at the end of life.
In closing, I add my support for the call by the noble Baroness, Lady Finlay of Llandaff, to ensure that palliative care is truly seen as a top priority for all CCGs and that the Government ensure that they are held to this and provide specific funding to enable it.
I leave my final word to a consultant from St Benedict’s Hospice, Sunderland:
“Many palliative care professionals will tell you of a time that the involvement of the chaplain was the key intervention in a person’s care. Not so much the drugs, the nursing care, the therapy support or the hospice bed. Instead it was the confession, the sacrament, or the calm and unhurried listening ear that brought a person peace at the end of their life”.
My Lords, in his foreword, the Parliamentary Under-Secretary of State, now the Minister for the Cabinet Office, quoted Dame Cicely Saunders, who said,
“we should see the last stages of life not as a defeat but as life’s fulfilment”.
I wholly subscribe to the spirit in this report of ensuring that everyone who dies in England can have a peaceful and compassionate death. It is one area where the Government can do some good and have a direct impact upon people’s quality of life, or, indeed, death.
In the government response to the report, point 2 lays out a commitment to put in place measures to improve care quality for all across different settings. This is an aim to which I wholly subscribe, and I wish to draw attention to one area in particular. In Wales, managed clinical networks are used to create a strategic and joint approach to children’s palliative care across local areas. This is a recommendation from the National Institute for Health and Care Excellence’s clinical guidelines on end-of-life care. Will the current Parliamentary Under-Secretary of State say whether they plan on implementing this recommendation, and if so, what steps are they taking? If not, why not? A recent Written Answer stated that this is a responsibility of English commissioning groups, which I understand, but I wish to know the plans in place moving forward.
Another important issue also rests on point 2, and on point 7: the commitment to strengthen accountability and transparency. The commissioning map of children’s palliative care produced by Together for Short Lives reveals a worrying lack of consistency across commissioning groups. One in six groups commissions children’s hospice services, and more than one in four groups does not commission out-of-hours community children’s nursing. I understand and support the arguments for devolution and for handing greater budgetary control over to the bodies closest to the patient, but some level of basic consistency must be maintained. Many of the clinical commissioning groups which fail to commission the aforementioned services are across the north of England and the south-west, and some have simply failed to answer freedom of information requests, which I hope the Minister can look into. Given that, my question is quite simple. Will the Government ensure that local commissioning groups are held accountable to NHS England for delivering comprehensive children’s palliative care to end this worrying inconsistency in palliative services?
There is, however, much to applaud in the report. The beefing up of the Ambitions for Palliative and End of Life Care website is to be welcomed, as it will become a more valuable and accessible source for patients, physicians and managers. I would recommend it host more blogs to share the first-hand experiences of physicians more directly. I also hope the new suite of metrics to measure progress in end-of-life care will cover the availability of support for young people, given that the current reporting mechanisms do not appear to provide immediately accessible information.
My Lords, I congratulate my noble friend Lady Finlay of Llandaff on all she does for end-of-life and palliative care and thank her for having secured this debate. In a few days’ time this month, it will be the anniversary of when my husband died, on a Sunday. In the few minutes I have, I want to relate to your Lordships the experience I had with my husband’s end of life, so that, I hope, it will improve the lot of others when it happens to their loved ones, and to put some suggestions forward.
I was married for 47 years, and my husband would have preferred to die at home, but this was not to be. One day, while sitting watching cricket on the television, he had a stroke, which triggered diabetes and Parkinson’s disease. For about 10 years, he had many complex problems, such as bleeds and a cancer tumour; the wound did not heal. As time went on, swallowing became a problem, and care had to be taken when eating. One Friday, he had a chest infection, and in the evening, an out-of-hours doctor came out and prescribed an antibiotic which had to be in liquid form. As we lived in rural north Yorkshire, it took time chasing around to find a supermarket which had the antibiotic in liquid form. The next day, his condition had not improved. I telephoned the out-of-hours doctor, but it being a Saturday, a different doctor was on call and refused to come out. Had it been one of my sheep, the out-of-hours vet would have been out within the hour. My husband needed the antibiotic in a drip, but it was impossible, even though I tried, and tried very hard. My husband’s carers could have managed it.
On the Sunday, my husband wanted me to represent him at a lunch he would have attended. On my return, his condition had worsened, and I telephoned again. Another out-of-hours doctor sent an ambulance, and my husband was taken to A&E in the hospital which was receiving patients that weekend. I followed in my car. In A&E, there was a doctor, a charge nurse and me. As this was not the hospital which had looked after my husband before, there was no way in which the doctor could access his medical notes, and the GP’s surgery was shut. The doctor could not get a cannula in a vein, and given my husband’s very complex condition, the situation became untenable.
I feel there should be some system so that vulnerable people who may become very ill are known by the local health bodies. The hospital chaplain of my husband’s faith was late. My husband died with me holding his hand while his life ebbed away, and the doctor and nurse could do no more. Afterwards, as it was classed as a sudden death, two young police officers arrived, but no one seemed to know what was happening. The GP came and saw me on the Monday so he could sign the death certificate.
More help should come into the home, and there should be the ability to have a drip. Records should be with the patient and there should be better planning at weekends, as things can happen so quickly. Out-of-hours doctors should be understanding and compassionate. There should be a system with good communication for end-of-life situations. I hope the Government, CCGs and all concerned can come together and commit to finding a way of providing compassionate end-of-life care.
My Lords, I am sure the whole House will have been moved and instructed by the courageous speech that we have just heard from the noble Baroness. I look forward to the Minister’s response to it.
I pay my tribute to my noble friend—and indeed my very good friend—Lady Finlay for obtaining this debate and opening it with such skill. We in this House all benefit from her knowledge of palliative care, and indeed many of us have deferred on many occasions to that knowledge in quite specific circumstances.
It is a very good thing that we are able to debate the subject in this House and that so many noble Lords wish to take part. Indeed, I pay my tribute to the Government producing a document called Our Commitment to You for End of Life Care: The Government Response to the Review of Choice in End of Life Care. I cannot imagine that such a document would have appeared from a Government 10 or even seven or eight years ago. We are now beginning to talk properly about death and end-of-life care.
There must be many in this House—many of us have lost our parents, for example—who have witnessed the death of someone we love and have long loved. We heard the phrase “the quality of death” earlier in this debate. For me, one of the greatest privileges I have had was to witness a quality death in people whom I loved. Witnessing the death of someone you love and have long loved is a profoundly moving experience if it happens to you. To my mind, it is capable of being as profound an event as witnessing the birth of someone you are about to love as a parent. For death to be an event of that quality, however, good end-of-life care is essential.
I turn to children’s end-of-life care, a subject very eloquently spoken to by the noble Baroness, Lady Bakewell, and the noble Lord, Lord Suri. At the end of the 1990s and the beginning of this century I was a trustee of a children’s hospice, as it then was, on the Wales/Shropshire border. It made an enormous contribution to the lives of sick children and the lives of their families, who sometimes desperately needed respite from the difficulties that their dying children brought to the whole family, including their siblings, who often find that situation very difficult to cope with. It provided a process of death for children that was effective and moving and meant that everyone in the family was able to look back on that death as one of the most significant and historic events in the life of the family.
What worried me then, and worries me still, is that the statutory sector was reluctant, and remains reluctant, to recognise the contribution made by charitable organisations that provide hospice care for children. At the time when I was a trustee, there was barely any funding coming from the statutory sector to charities that were running children’s hospices. The situation is better now. Nevertheless, nearly one in five of commissioning groups do not commission children’s hospices at all, and seven commissioning groups refuse to commission children’s hospices to provide care just because they are charities. That is part of the very useful information that I and other Members of your Lordships’ House have received from Together for Short Lives and the Rainbow Trust, which I applaud for the assistance they have given to us towards this debate.
I shall simply ask the Minister one or two of the many questions posed by those charities. Given that it is the Government’s stated intent to make sure that commissioners prioritise children’s palliative care in their strategic planning, will the Government now take steps to make sure that clinical commissioning groups understand that they are responsible for commissioning for children’s palliative care and that they embrace the work that is done in the third sector? Will the Government also make sure that they are accountable to NHS England for delivering comprehensive children’s palliative care to end the postcode lottery that has been mentioned?
The final point I shall mention, because the hospice that I was a trustee of was in a rural area, is to ask the Government to try to ensure that rurality is not a handicap for families with dying children.
My Lords, I am indeed grateful to the noble Baroness, Lady Finlay of Llandaff, for raising the issue of end-of-life care and for introducing the debate in such a knowledgeable and sympathetic manner. I also thank the House of Lords Library for setting out the issues for debate in such a clear manner, following the report of the programme board’s review and the Government’s response. I come at this debate from personal experience as my brother died in a hospice last October, having been diagnosed with cancer of the tongue, followed by secondary cancers, in January.
There are many positives about end-of-life care in the UK in all settings, and the intentions expressed to improve it are to be admired. I note the recommendations on offering choice of care; on honest conversations with healthcare staff; on recording of a chosen plan of care; and on having a named responsible senior clinician in charge, and a care co-ordinator. I note the recommendation that carers for people at the end of life should have their needs for support met and that family members, carers and those important to the individual should be involved in discussions about care preferences. Joint working between palliative care specialists and other clinical staff, and between secondary and primary care staff to identify need, is highlighted, as is breaking down organisational boundaries to allow staff working in acute settings to play a role in community settings. There is a welcome reference to NHS and social care organisations working together with the voluntary sector to support hospices in response to the concept of a national framework.
Those issues ring very true when I consider my brother’s path through care in east Cheshire. The staff at all levels were superb, from diagnosis through to treatment and finally to death. The GP visited the home and was understanding and caring of the needs of both my brother and my sister-in-law, who was caring for him at home. The district nurses were wonderful, as were ancillary staff. One of them recommended a hospice respite twice as my sister-in-law, a complete star, was doing a difficult job with resilience and strength but under immense pressure. She was becoming exhausted, caring day and night for my brother. A suction pump for mucus in the mouth and throat caused him to have panic attacks. By this time, he could not speak.
I turn now to some more negative issues. One is about communication. Sometimes there was a letter indicating the next hospital appointment, sometimes there was not. There were phone numbers to contact in case of emergency. This mainly worked—but, occasionally, there was a long wait. For example, my brother collapsed twice, and twice a suction tube became blocked—once at night. Some nurses did not appear to know how to use a suction pump.
But to go back to the positive, services such as physiotherapy were automatically brought in for my brother. I was impressed by the directness of the staff whom I met; there was no dissembling about the serious and inevitable nature of the illness, which helped all of us.
I come, finally, to hospices and their funding. The East Cheshire Hospice was superb. My brother received treatment not only for the clinical aspects of his condition—he received massage, art therapy, reiki, acupuncture and other alternative therapies. He also had wi-fi. There is a centre called the Sunflower Centre attached to the hospice, where my sister-in-law could get advice and treatment if she wished. At my brother’s death, the chaplain ushered the family into the garden, brought tea and biscuits and chatted. None of our family is religious; she simply offered quiet reflection and advice on what next. She knew all the religious bodies in the area, and the humanists, and offered to contact whoever we wanted to take charge of the funeral ceremony. A nurse offered counselling sessions to my sister-in-law. All these non-medical interventions were so important and so life-enhancing in the midst of death. Often, it was little gestures that counted.
It seems that NHS funding does not follow a patient into a hospice, although it would into a nursing home. Hospices, seemingly, have to fundraise to provide their services. Could the Minister explain this situation? Just before he died, my brother wrote me a note which said, “You have to do something about hospice funding”. Well, I am doing what I can. Can the Minister help?
My Lords, I am most grateful to my noble friend Lady Finlay for initiating this debate. I declare my interest as chair of Dignity in Dying, the sister organisation of Compassion in Dying, which is a slightly separate charity. Ensuring that people have genuine, meaningful choice at the end of life is central to improving care. Over the past decades, much of our NHS has shifted significantly from a somewhat paternalistic model of care, where the doctor is assumed to know best, to one where the patient’s wishes are paramount. This trend was strikingly evident in mental health care, where I worked for about 25 years. End-of-life care is lagging behind far too often.
Ben Gummer MP, Parliamentary Under-Secretary of State for Care Quality, in his foreword to the government response to the review of end-of-life care pointed out that,
“our care of dying people is … variable, haphazard and at times shockingly poor”.
The Government’s response also says:
“We know that too many people are not involved enough in decisions about their care … care is not sufficiently focused on the person’s individual needs and preferences”.
That seems profoundly true.
Dying people must be aware of their legal right to plan ahead for their own care and, crucially, their right to exercise their choice step by step along the way. Polling shows the enormous job that lies ahead to achieve those objectives. According to a YouGov poll in 2014, 82% of us have strong views about end-of-life care, yet only 4% of us have made an advance decision or appointed a lasting power of attorney. The Macmillan briefing points out that 73% of people with cancer would prefer to die at home, yet only one-third actually do so. Healthcare professionals and providers still too often impose their own views about what is best for their patients. My principles for end-of-life care come very much from the five years I spent chairing a clinical ethics committee. The principles of compassion and patient choice dominated then and, for me, they dominate today. A very important tool for patients and their end-of-life clinicians is, of course, the advance care planning process. One key message from this debate is surely the importance of commissioners funding the promotion and implementation of that process.
What are the benefits of advance care planning? Why does it really matter? Research shows that, when people are able to make informed decisions about their own treatment and care, those patients are far more satisfied. A 2015 YouGov poll revealed that when a patient’s wishes are not documented, 53% are likely to receive treatment they do not actually want—a complete waste of money. Academic research shows the potential of patient choice to produce significant financial savings to the NHS, a reduction in unplanned hospital admissions and the length of time spent in hospital in the last 12 months of life when, of course, most hospital care takes place. A real culture change towards patient choice, which involves planning ahead, is not only better for individuals but absolutely vital if the NHS is to cope with the financial pressures ahead. It is disappointing that only a minority of sustainability and transformation plans have laid out clear plans for addressing improvements at the end of life. Can the Minister assure the House that NHS England will insist that plans which fail to address end-of-life care—and preparation for advance care planning in particular—will be revised?
It is encouraging that the Government asked for advance decision-making to be central to the remit of the National Mental Capacity Forum. A recent study by the charity Compassion in Dying again emphasised the importance and benefits of making advance decisions. The report received widespread public support. Patients need information if they are to make informed decisions. Compassion in Dying recently commissioned qualitative research interviews with dying people. The results are worrying. One respondent—we will call her Sally—had ovarian cancer. She said:
“There are so many people out there who are certainly not getting the information they need from the professionals they’re dealing with, not about benefits, not about prognosis, not about symptoms, not about support, not about end of life care or the choices. Nothing. Nothing, unless you bring the subject up”.
The Government’s response to the choice review pledged that people would be able to have honest discussions about their needs and preferences. Clearly, this is often not happening. Commissioners need to ensure that doctors are trained to have difficult conversations with patients, and that doctors understand that patient choice is not a luxury add-on to good care but central to it.
My Lords, I add my thanks to the noble Baroness, Lady Finlay, for introducing this debate with such authority on an issue of inescapable relevance to us all.
We already have some options. We can ask not to be resuscitated if we have heart failure; we can decline invasive cancer treatment. We can legally formalise such wishes via an advance decision to refuse treatment, or via lasting powers of attorney. It is dismaying that only 4% of people who should take such measures have actually done so, and of course this has to be done before they lose the capacity to make choices for themselves.
A clear signalling of our wishes for end-of-life care will become even more important as medical science advances, creating, in consequence, a widening gulf between what could be achieved by extraordinary measures and the way in which most of us would prefer to end our days. This leads me to a parenthetic comment prompted by the short debate only last week on assisted dying. That debate focused on those who, even with the best palliative care, spend their last days in a predicament where they feel that life is no longer worth living.
I realise that this is viewed as a separate issue and that many people are deeply opposed to legalising assisted dying, but there will be an increasingly fuzzy boundary between assisted dying and the consequences of having signed a directive to refuse treatment. There will be cases when doctors will be prevented from acting even in cases when they feel confident that they could achieve genuine improvements in someone’s quality of life. The blurred distinction between killing and letting die is familiar to anyone who has had courses in philosophy and ethics.
Paragraph 13 of the end-of-life care review urges that,
“by the end of 2019, every local area should establish 24/7 end of life care for people being cared for outside hospital, in line with the NICE quality standard for end of life care, which supports people’s choices and preferences”.
The Government’s response, as far as its sentiments go, ticks all the right boxes. However, what causes anxiety is the gap between the aspirations and what can realistically be provided in a policy regime where austerity and the small state are the mantras, and where the demands are growing because more people are surviving to an advanced age with consequent more complex needs. What is surely uncontroversial is that far more resources should be deployed to care properly for those nearing their end, either in hospices or at home.
If we were in Japan, we would hear futurologists extolling the role that robots will play in caring for the old. Automatons can indeed help with household tasks and with mobility. As the noble Baroness, Lady Lane-Fox, has emphasised, digital technology is of crucial value. However, let us not kid ourselves that they are an acceptable substitute for genuine carers—real human beings, with empathy and time to talk with, and comfort, those who are dying. Robots may surpass humans in precision surgery and medical diagnostics, but they will never replace humans as carers. Even if a vulnerable person—say, with advanced dementia—is comforted by a machine or even a soft toy, their human dignity is being betrayed if that is all they have. We would be short-changing the old if we offered them just a mechanical simulacrum of sympathy.
Not only are there now too few jobs for carers, but these jobs are poorly paid, insecure and carry low status. This is surely a signal that we need a change in public attitudes, in the deployment of funds and in the labour market. We are told that workers in whole segments of the economy will be displaced by automation. Huge numbers of people, mainly themselves in middle age, may become less employable in traditional economic roles. However, many of them will have just the qualities needed to be excellent carers. That is why there needs to be a policy rethink, leading to innovative ways of funding in both the public and charitable sectors an expansion of upgraded, esteemed and secure employment for carers so that we can all feel confident, when our time comes, that we will have access to the support, both physical and spiritual, that is now available only to some.
My Lords, as the King’s Fund report Understanding NHS Financial Pressures commented yesterday, terminally ill patients have very little political voice. Therefore, I am delighted that the noble Baroness, Lady Finlay, has spoken up for them this evening. Indeed, I am very grateful that I live in Wales and will probably die there.
Over the last five years, we have seen several reviews of palliative and end-of-life care with multiple recommendations. Therefore, I hope that, at the end of this debate, the Minister will be able to provide us with an update on progress towards meeting those recommendations. For example, the Government’s response to the review of choice made two commitments that are particularly relevant to the topic we are debating today—namely, to,
“engage with clinical commissioning groups and Health and Wellbeing boards on improving end of life care provision through local strategic planning and commissioning”;
“to provide commissioners with data, tools and palliative care currencies to help identify palliative care needs in local areas and the best ways to commission services to meet those needs”.
I hate jargon, so I looked up what “palliative care currencies” means. I found that it refers to payment models for palliative care. As the Minister will know, the majority of community palliative care providers in England, which are largely in the voluntary sector, are currently commissioned by block contract, and a lot of hospices in particular have been working within the same cash envelope for many years. Indeed, yesterday’s report from the King’s Fund commented that one of the factors that make some services particularly vulnerable is that block contracts have not been adjusted to match rising demand, and that demand is continuing to rise.
In 2010, Marie Curie’s review of funding recommended that the NHS move to a per-patient funding model, defined by phase of illness, so that providers would be paid more for patients with more complex care needs. One of the major difficulties encountered was the fact that most voluntary sector providers have a mixture of NHS and charitable funding, so it was difficult to identify which aspects of care were NHS-funded and which were charitably funded. Therefore, moving every provider to per-patient funding has its problems. Can the Minister now confirm that NHS England will provide a number of different palliative care currencies so that commissioners can choose which method is right for their locality? If that is the case, how will value for money be audited and by whom?
We have heard that palliative care in this country can be the best in the world. However, successive national care for the dying audits have found wide variations in the quality of care in different hospitals. I welcome the fact that end-of-life care is now a key area for assessment in the Care Quality Commission’s inspections of hospitals, but can the Minister update us on the plans in place for those that perform badly to learn from the best?
However, poor patient and family experiences are often due to poor commissioning, planning and co-ordination, as well as insufficient provision for family support, rather than poor delivery. Clinical commissioners have a vital role in co-ordination because it is increasingly rare that individuals’ needs will be met by one service alone and they often need to be moved from one location to another as their needs change. Co-ordination is particularly crucial when terminally ill patients wish to die at home. Last year I spoke in your Lordships’ House about a particularly distressing case that I know of where that all went wrong. Obviously it makes sense to get services right in the community rather than have the patient admitted to hospital when the family can no longer cope.
Despite the numbers needing these services, according to Marie Curie, just over half of health and well-being boards in England made no mention of palliative care in their strategies, only a third had comprehensive plans, and 30% of STPs made no mention of end-of-life care at all. Given that NHS England says that it requires local leaders and professionals to ensure that a strategy for end-of-life care is in place, this is pretty disgraceful, and, having made that statement, it does not audit what is in place, so there is no accountability. Therefore, I ask the Minister how CCGs and health and well-being boards are being held to account for this state of affairs.
Finally, I want to raise clinical training. A professor of palliative care who is a friend of mine told me recently that some medical graduates have no more than one day of training in end-of-life care. In other places, such as Royal Liverpool University Hospital, students spend three weeks in local hospices, which equips them much better. Although we need palliative care specialists, we also need generalists with enough knowledge of pain management and other issues linked to end-of-life care, including how to help the bereaved. I understand that Health Education England’s end-of-life care core skills education and training framework—what a mouthful—is soon to be published. Can the Minister say how soon it will be implemented?
My Lords, I too congratulate the noble Baroness, Lady Finlay, for her usual forthright and expert introduction to what has been an excellent debate, coming at a crucial time as STPs are taking shape and underlining the need for strong national and local leadership to achieve the improved care that we all wish to see. The publication of the BMJ’s CCG research, which she was involved in, could not have been better timed for our debate, and I thank her for that too.
I also commend the excellent work of the End of Life Care Coalition on the independent choice review and the ambitions framework. The national choice offer of what should be offered to everyone who needs end-of-life care, backed by dedicated funding, better training for healthcare professionals and better research and data collection around the care given, provides a clear way forward and is fully supported by these Benches.
Today’s debate makes it clear that if STPs are to be the route for implementing the Government’s national commitment, local plans have to be backed with the money to implement them. CCGs that are failing to prioritise and appropriately commission end-of-life care that meets people’s needs must be called to account both locally and nationally and supported to do better.
The context for the debate has been clear—a familiar story of many examples of excellent quality and compassionate care in community, voluntary sector and hospital settings, but examples of considerable variation in the nature and quality of services provided both between and within geographical areas and between different medical conditions. Instead of national leadership from NHS England and the Government, however, we have the deafening silence in the Government’s response to the choice review’s call for an extra £130 million to deliver choice by the end of this decade. Like other noble Lords, I look forward to hearing from the Minister how he expects to seek improvements in end-of-life care without committing to the additional funding called for in the review. What action will be taken to address the failure in so many STPs to see end-of-life care as a core service and to prioritise funding and planning? As the Marie Curie charity puts it:
“It is unclear to us how the Government intends to support more people to get out of hospital at the end of life without additional money to boost capacity”.
Delayed transfers of care jumped by 29% between September 2015 and September 2016, and about 30% of those people are in the last year of life.
Providing national choice in end-of-life care means increasing out-of-hours hospital care and co-ordinated, integrated services and close partnership working between the NHS, voluntary sector and community services and social care. Excellent care at home programmes such as Macmillan specialist care deliver a proactive model that we all support of early patient referral to a multidisciplinary team, clinical interventions at home where possible, close and proactive working between primary and other service providers, flexible teamwork between specialists, generalists and trained volunteers and the close involvement of family and carers.
End-of-life care has well-established systems for working together, particularly in hospital, hospice and home care, but some STPs do not fully recognise the importance of third sector involvement in the delivery of end-of-life care plans and there is particular concern that hospice services, which rely heavily on charitable donations to cover full running costs, are especially vulnerable, as my noble friend Lady Massey stressed. Will the Minister give us reassurances on this?
On STPs, the King’s Fund’s recent progress assessment, while not specifying end-of-life care, asked highly relevant key questions about how it can be improved in the current NHS and social care climate. How are plans to be funded? How will integrated care be delivered in the concept of having to “work around” the,
“fragmented and complex organisational arrangements in the NHS created by the 2012 Act”—
its words not mine—and when the NHS is under huge pressure to make efficiency savings and improve performance? These questions all need to be answered if the vision set out in the national commitment is to be delivered. What is the Minister’s response to that?
We have heard particular concern about CCGs’ poor commissioning of children’s and young people’s palliative and end-of-life care in England. The noble Baroness, Lady Bakewell, raised the issue of the care of under-three year-olds and the noble Lord, Lord Carlile, spoke about hospices in that context. Together for Short Lives has found that 7% of CCGs do not commission palliative care for out-of-hours children’s nurses to support families and carers and avoid unnecessary, often traumatic, hospital admissions. The Rainbow Trust, which provides emotional and practical support to parent carers and families whose children have a terminal or life-threatening illness, received no funding from CCGs in 2015-16 and just 3% from local authorities. Hospice UK’s survey found that seven in 10 CCGs do not have a strategy for children and young people living with life-shortening conditions. I hope that the Government will undertake to work with charities such as Together for Short Lives to produce guidance for CCGs that outlines best practice and makes their responsibilities clear.
The ambitions framework stresses that every CCG board should have a clear vision of what package of services locally will deliver the goals of high-quality, professionalised end-of-life care and should actively seek out commissioning resources to achieve this. I look forward to hearing from the Minister how the Government intend to make sure that that happens.
My Lords, I thank the noble Baroness, Lady Finlay, for precipitating the debate. In many ways this is the most difficult of all subjects to discuss. I pay tribute to her courage and leadership in the work she has done to bring it to the fore and to make it an issue of such public policy importance.
As the noble Lord, Lord Carlile, said in his speech, in recent years there has been a much greater focus on improving the quality of people’s experiences of end-of-life care—to help them, as my right honourable friend the former Health Minister, Ben Gummer, put it in his foreword to the Government’s response, to experience a “good death”, or as the noble Baroness, Lady Finlay, put it, gentle dying. As the noble Baroness said, bad care should never happen. We know that many people in England already receive good end-of-life care and internationally we continue to lead in the overall quality of end-of-life care provided. That is the result of sustained effort over recent years to improve people’s experiences of end-of-life care. I join all noble Lords in thanking the staff who work in our health and care system, and the many charities that have been mentioned tonight and others besides that support people at the end of their lives.
However, as we recognised in our response to the independent review of choice in end-of-life care, and as all noble Lords have rightly argued, there is too much unacceptable variation in quality and provision. This can have real consequences for the care that some people receive at this all-important time in their lives. I thank deeply the noble Baroness, Lady Masham, for sharing the moving story of her husband’s death and the noble Baroness, Lady Massey, for sharing the story of her brother’s death. I and, I know, the whole House will agree wholeheartedly with them that the description of what end-of-life care should be like, with compassion at its heart, is what motivates us. That is what sits behind everything the Government are trying to do and is what motivates people who work in this important sector.
To address the issue of variation and to provide the kind of patient choice that the noble Baroness, Lady Meacher, called for, last year we set out our ambition for everybody approaching the end of life to receive high-quality care that reflects their individual needs, choices and preferences. I thank my noble friend Lord Suri and other noble Lords for welcoming these plans. The plan is based on six commitments, setting out what all people at the end of their life should be able to expect from care. They include honest discussions between care professionals and dying people, and dying people making informed choices about their care. The noble Baroness, Lady Meacher, brought out a helpful statistic that while 82% of people have strong views, they may not be informed of the choices available to them. The third commitment is personalised care plans for all; then there is discussion of personalised care plans with care professionals, the involvement of family and carers in dying people’s care, and a key contact so dying people know who to contact at any time of day.
These commitments apply to all end-of-life care, whether delivered in a hospital, a hospice, or as part of a community service in a care home or a person’s own home. They apply to all parts of the country and underpin local plans to deliver end-of-life care in every clinical commissioning group.
The national end-of-life care programme board has been set up to oversee the implementation of this plan. It is chaired by Sir Bruce Keogh, NHS England’s medical director. We have also called on local health and care leaders, including commissioners and all health and well-being board chairs, to prioritise improvements to end-of-life care in their plans to improve local services. We are taking a number of specific actions to support these commitments. I will give a few examples.
To improve the quality of care in hospitals, all NHS trusts that have a poor CQC end-of-life care rating been visited by NHS Improvement to support them to improve their offer.
Several noble Lords have highlighted the importance of training. Health Education England is changing its training standards so that care workers have the right skills mix, including, I hope, digital skills, as the noble Baroness, Lady Lane-Fox, pointed out. I will check that that is the case. They should have the right training to support honest conversations and personalised care. NHS England is currently working with two new care model sites in Airedale and Southend to test an innovative approach to serious illness conversations, in which clinicians are trained to support people with serious illnesses to discuss what is important to them.
I thank the right reverend Prelate the Bishop of Durham for highlighting the important and very powerful impact that chaplains have on people at the end of their lives. They provide an invaluable service. I will write to Sir Bruce Keogh, who, as I mentioned, is chairing the national board, to emphasise the important role that chaplaincy can and must play in provision of end-of-life care for people with or without a religious belief.
On greater personalisation of care and care planning, NHS England is working to ensure that shared digital palliative and end-of-life care records will have been rolled out to the majority of local areas by 2018 and all areas by 2020 to enable preferences to be recorded, shared and achieved more easily. As the noble Baroness, Lady Lane-Fox, highlighted, good data and digital provision can help enormously to improve end-of-life care. I am encouraged by the work that she is doing, although alarmed by the statistics that she mentioned about care homes not having wi-fi—that has been addressed in hospitals but not in that setting, and is something that I will investigate.
To improve access to urgent clinical advice and support for end-of-life care, including expert advice on specialist palliative care, NHS England is ensuring that each clinical advisory hub across the country will include clear and explicit processes for access to palliative care and will be accessible to individuals who need the service, their families and professionals involved in their care.
Several noble Lords mentioned the importance of good commissioning, including the noble Baroness, Lady Meacher, who demonstrated the impact that good commissioning can have on improving outcomes and quality of life. In line with the plans we are setting out in the government response, we are also taking a number of actions to improve the way in which care is planned and commissioned. This includes work between NHS England’s regional offices and local commissioners to put end-of-life care at the centre of activity as part of local sustainability and transformation plans. The noble Baronesses, Lady Wheeler, Lady Meacher and Lady Walmsley, all mentioned sustainability and transformation plans—indeed, the noble Baroness, Lady Finlay, mentioned them both today and in an earlier debate on this issue. The plans are now being consulted on, so this is now an opportunity to make sure that they properly represent all the imperatives that they should. The national programme board, chaired by Sir Bruce Keogh, is preparing a support offer to those STPs that have not yet planned for it well to make sure that it is done properly.
The noble Baroness, Lady Walmsley, asked about care currencies. She was quite right about the tendency to jargon in this area; it is described as a specialist palliative care currency model, I am afraid, so it is worse than she feared. But the idea is a good one—she highlighted the importance of it—which is to provide a level of transparency and certainty on the kind of funding that will follow. It will not be precisely payment by results or payment by outcome, because of the importance of the charitable sector, but it will provide greater transparency and certainty on the funding of hospices. We aim to publish that shortly.
The government response has made key commitments on holding the system to account for the improvements that we want to see, including addressing unacceptable variation. It includes introducing a separate priority area within the CCG improvement and assessment framework for end-of-life care, as the noble Baroness, Lady Walmsley, pointed out. We are also developing new metrics for end-of-life care that have been put forward for potential inclusion, which will allow us to hold CCGs to account for their performance in this area.
Several noble Lords referred to children’s hospices. In a difficult subject, the heart-breaking idea of tiny children with short lives and life-limiting conditions makes it even harder. I agree with all noble Lords about the importance of palliative care for children. Some £11 million is available through the children’s hospice and hospice-at-home grant which goes to support children’s hospices on top of what clinical commissioning groups do. NHS England is engaging in consultation with Together for Short Lives on its 2017-18 grant allocation. It is intended that this new palliative care currency will also help to provide greater transparency, clarity and consistency for the funding of all hospices, both for adults and for children.
The noble Baroness, Lady Finlay, asked about better outcomes for dying people. There are now new NHS clinical guidelines that those working in the sector must follow, as I am sure she will know. We have also commissioned the charity Sands to develop a standard bereavement pathway so that there is greater consistency across the country. The noble Baroness asked about a framework funding model. I hope that I have addressed her questions on that in describing the palliative care currencies, which will be published shortly.
The noble Lord, Lord Rees, asked about more resources. There was of course an announcement in the Budget of additional support for social care, which I realise is not the same as end-of-life care, but does incorporate people who are at the end of their lives if they are in a care setting. I hope this was welcome. We also have an important commitment to a long-term solution for care, and a further Green Paper to follow on that issue. For that to be truly comprehensive and sustainable, it must also incorporate a sustainable regime for end-of-life care within those kinds of settings, so I hope noble Lords will welcome the announcement that that will be coming later this year.
To conclude, I thank the noble Baroness, Lady Finlay, for highlighting this incredibly important issue. I remember as a teenager reading A Happy Death by Albert Camus. As a teenager, I think you veer between being horrified by the idea of death and thinking that it will never happen to you; and then you grow up. While I may no longer be an existentialist, I still agree that a happy death—gentle dying—is the right outcome that we want to achieve universally in this country. We are starting from a point of variation and, as the noble Baroness said, there is bad care and there should not be bad care. We are fully committed to working with all people in the care sector, with carers, to ensure that anyone with a terminal illness has access to the high-quality, personalised care that they deserve.
Question for Short Debate
House adjourned at 10.01 pm.