(8 years, 9 months ago)
Commons ChamberRead Hansard Text Read Debate Ministerial Extracts
Dr Sarah Wollaston (Totnes) (Con)
The care that people receive at the end of their lives has a profound impact, not only on them but on their families and carers. All Members of the House want people to be able to access the highest quality care, irrespective of their age, diagnosis, where they live or the setting in which they are treated. We know how to deliver world-class care—indeed, we know how to deliver globally inspiring care. To start on a positive note, I should say that The Economist ranks Britain as the best in the world, from among 80 nations, for delivering end-of-life care, and we should be proud of that. The disadvantage is that that care is not available everywhere to everyone, and that is the challenge we face today.
In the 2015 report “Dying without dignity”, the Parliamentary and Health Service Ombudsman set out some starkly worrying cases of poor care that highlighted a theme, and she was clear that it is a recurring and consistent theme in her casework. For that reason, the Minister must look carefully at the themes in that report, and also at other reports that have been produced.
At the end of the previous Parliament, the Health Committee produced a report on end-of-life care, and I thank all members of that Committee, the Committee staff and our Committee specialist advisors for their valuable input, as well as the very many people and organisations from around the country who contributed.
Mark Tami (Alyn and Deeside) (Lab)
Does the hon. Lady agree that we must also consider the families of those children who unfortunately have very short lives? We need support for them as well, and it should be available across the country.
Dr Wollaston
I agree entirely with the hon. Gentleman that this care should apply irrespective of someone’s age or the setting in which they are treated. Social care will be integral to that, and I will expand further on that issue later on.
Another report the Minister will be aware of—it was commissioned by the previous Government from the Choice in End of Life Care Programme board—is “What’s Important to Me. A Review of Choice in End of Life Care”. It is now exactly a year since that report was launched. When can we see a timetable and a response to that long-awaited report?
I know other Members want to speak, so I will just touch on four key themes today: variation, communication, choice and control, and funding—including funding for social care. On variation, dying does not make equals of us. People with cancer are currently accessing about 75% of specialist palliative care. We are making great progress in that regard, but we need to make such palliative care available to people with other diagnoses. Our report touched on poor access for elderly people, particularly those with a diagnosis of dementia. The Minister will be aware of the “National Care of the Dying Audit for Hospitals,” which showed that 21% of hospital trusts are meeting National Institute for Health and Care Excellence guidance for providing seven-day-a-week, face-to-face specialist palliative care between the hours of nine and five. In fact, only 2% of trusts are making that care available around the clock, seven days a week. We have a long way to go.
Tackling variation means understanding where the gaps exist. The VOICES survey, which collects the views of informal carers and evaluates the services available to them, has been invaluable in setting out the issues important to those who have been bereaved and the experience of their loved ones after a bereavement. A point that has been made to me very forcefully is that we could do so much better in addressing the gaps in provision if the VOICES survey was expanded. Currently, it does not have enough power to be able to identify where there is variation around the country. Will the Minister address that point when he sums up?
John Redwood (Wokingham) (Con)
I wonder whether my hon. Friend could give me some guidance. Ideally, when should end-of-life care begin? What sort of time period are we talking about and how much uncertainty is there over the diagnosis? There are all sorts of complications: we cannot be sure whether someone is terminally ill and is going to die within a limited number of days.
Dr Wollaston
My right hon. Friend raises a very important point. It should start as soon as possible—as soon as someone receives a life-limiting diagnosis. We need to start those conversations much earlier on. We need to get better at identifying, towards the very end of life, when people are in the final stages of an illness. I will touch on that point in greater depth in a minute.
We should recognise some successes and welcome the changes made by the Care Quality Commission, in one of its thematic reviews, to prioritise end-of-life care. Does the Minister have any plans to roll out that rather successful approach in prioritising end-of-life care to out-of-hospital settings? The CQC has highlighted successfully the critical importance of leadership in improving end-of-life care, examining how having a named individual—not as a tick in a box—translates into their leading change within the hospital and identifying other individuals there who can improve the quality of care at the end of life. Recognising it as a thematic review would be very helpful in other fields.
The critical importance of training has been raised by all those who have commented. We need to provide adequate training for medical, nursing and caring staff across the board. Has the Minister had any conversations with Health Education England about what progress can be made in rolling out further training?
On communication, which my right hon. Friend the Member for Wokingham (John Redwood) touched on, early identification will be crucial to rolling out end-of-life care to other groups beyond the traditional groups who access specialist end-of-life care. That means health professionals having the confidence and training to raise these issues at a much earlier stage and to start those difficult conversations that are too often put off.
We know that having an end-of-life care plan enables people to exercise much greater choice and control. We could go further in looking at explaining to people the differences between, for example, advance statements of wishes and advance decisions to refuse treatment. We could help people to put in place lasting powers of attorney, and nowhere is that more important than when people have been diagnosed with dementia. These conversations need, critically, to start at a much earlier point.
The sharing of communication between professionals is another issue. I know that the Minister has taken an interest in electronic care planning. When people have a life-limiting diagnosis, how can we ensure that at whatever point in the system they access care, they will not have to keep repeating their story? People’s wishes need to be understood at the earliest possible stage. We know that electronic care planning can help to reduce unnecessary hospital admissions. It is crucial for ambulance staff, for example, to have access to people’s records—with the patients’ consent, of course—so that they can be shared widely. Will the Minister update us in his summing up on what progress he has made with respect to electronic care planning and recording people’s wishes?
We can also improve communication by putting in place care co-ordinators. This point has been made to me repeatedly by people who are suffering from life-limiting illnesses. The system can sometimes appear to be terribly confusing, so allowing families to have a single point of contact to advocate on their behalf at a time when they are in distress can make a huge difference, as can having a named clinician who is taking overall responsibility for the care.
On care for people at the very end of life, the Minister will know that over the years we have much debated the Liverpool care pathway and its success. Other Members may wish to talk in greater detail about that, but emergency care treatment plans are important so that people can clearly document their wishes well in advance—not as a tick-box exercise, but as a considered exercise of having discussions with individuals and their loved ones about what their wishes are and then ensuring that they are respected. Will the Minister tell us where we are now with emergency care treatment planning?
At a time when people so often feel that they are losing control towards the end of their lives, it is vital to give people more choice and more control. That was the key theme of the so-called “Choice” review, on which I hope the Minister will update us. Where are we now with all who need it having a “national choice offer”, as it was termed? We know that about a half of the 470,000 people who died in 2014 died in hospital, yet we know from the VOICES survey that of those who expressed a preference, only 3% wanted to be in hospital. We are a long way from allowing people the kind of choice and control they want about where to be at the end of their lives. Most people would prefer to be at home, surrounded by their loved ones. We can do far better.
Many practical issues need to be addressed. One that I have seen first hand in my clinical experience is where families are exhausted and overwhelmed by caring responsibilities. Sometimes the individual at the heart of this will opt to go into hospital because they feel bad about the burden they feel, often wrongly, they are placing on their families. One key theme of our Health Committee report was that nobody should have to end their life in hospital for want of a social care package. That will mean being much more generous about providing free social care at the end of life, or much more rapid access to the assessments needed to allow people to continue in care, as they are sometimes very delayed. I hope the Minister will update us on that, too.
The Minister will be familiar with the work of the Nuffield Trust. Its report on the use of Marie Curie nurses, for example, pointed out that the service could save total care costs of £500 per patient and also allow many more people to be where they wanted to be at the end of their lives. Not only is the service good value for the overall health and care system, but it provides the choice and control that people desperately need and deserve at the end of their lives.
Funding lies at the heart of this issue, and it is not just a question of social care packages. I know the whole House agrees that we owe an enormous debt of gratitude to the hospice movement. Hospices play a pivotal role in outreach, providing specialist support not just for hospitals but, critically, throughout the community. Rowcroft hospice, in my constituency, is hugely valued in the community. It provides extraordinary levels of care and supplies many specialist services to the NHS to deal with—cases of lymphoedema, for instance. This week, however, it informed me that it faces a funding shortfall of £1 million next year. While about a third of its funding comes from the NHS, about 60% comes from charitable giving.
Hospices do not want to lose their link with the voluntary sector, because it is deeply embedded in the way in which they work in communities. However, it makes them rather vulnerable, because the level of charitable giving and legacies can vary greatly. What they need is a higher percentage of stable core funding to allow them to expand the important work that they do. The Minister will probably want to comment on the so-called currencies that are being developed to replace funding for palliative care. The feedback that I am receiving suggests that there is a risk that that will become a rather bureaucratic process, and there is also a worry that its implementation by clinical commissioning groups will not be compulsory. An update from the Minister would be helpful.
Will the Minister also assure us that, if the Government intend to implement all the recommendations of the “Choice” review—which I hope they do—he is satisfied that, across NHS England, the business plans that have been established will allow sufficient funding for a full implementation?
I know that other Members wish to speak. There are many other issues that I could raise, including bereavement support and research, but let me end by asking the Minister to be truly ambitious. I think that we can achieve seven-day, 24-hour access to specialist palliative care in all settings, and that we can address variation and give people choice and control at the end of their lives. It would be an extraordinary achievement for the Government to go further. We should not rest on our laurels because we are leading the world; we should say that we lead the world not just for some people, but for everyone.
Julie Cooper (Burnley) (Lab)
I am grateful for the opportunity to speak about such an important issue. Let me begin where the hon. Member for Totnes (Dr Wollaston) left off. I have been very impressed by what I have read. When end-of-life and palliative care in this country is at its very best, it is indeed the best in the world, which makes me proud to be British. However, it saddens me that that is not the case more widely. All the recent reports have demonstrated that access to the very best care varies tremendously, and is very patchy. It is for that reason that end-of-life care has been the subject of recent studies and reports, not least those of the Health Committee.
I understand that a very thorough piece of work was done before I became a member of the Committee last year, and that concerns were raised about this very issue. The “Choice” review body looked into it as well, and came up with various recommendations. I want to focus on one of those recommendations in particular. The review recommended that 24/7 care should be made available for people in a community setting. The point has already been made that it is hard to define the end of life and the timescale involved. Indeed, the British Medical Association makes the point that more funds are needed to train staff to a level at which they can better identify these things. The end of life can be a lengthy process, and people need support at this most important time of their life.
Most people who responded to questionnaires on this subject have said that they would prefer to die in the comfort of their own home, surrounded by their family. In order for that to happen with the maximum dignity and the highest standards, investment is needed in social care above all else. The recent cuts in social care budgets have been a matter of concern for most of us. Lancashire County Council is further reducing its spending on social care, and the elderly and disabled in my constituency and their families are already worried about the impact that this could have on them. However, we still aspire to have the highest possible standards for end of life care, and the two concepts simply do not add up.
I wonder why the Government are delaying their response to the “Choice” review. We desperately need to hear what their plans are, to determine whether they are really listening. The “Choice” review also recommended additional funding of £130 million, because the £8 billion that was allocated for spending in the NHS has already been well and truly spent many times over. County councils’ adult social care budgets are feeling the pinch.
Last year, in the run-up to the introduction of the private Member’s Bill tabled by my hon. Friend the Member for Wolverhampton South West (Rob Marris)—the Assisted Dying (No. 2) Bill—people in my constituency told me of their concerns about dignity at the end of life. Many of them asked me to vote to support the Bill because they were worried that a level of care that afforded them the dignity they wanted would not be available. They were worried about whether they might suffer and what the experience would be like for their families.
This issue is rightly at the top of the agenda, because this is the very least that we can do for the elderly and the sick. We do not like to talk about it, but everyone’s life is going to end and we need to think about this. The fact that we cannot do this better in 21st-century Britain makes me ashamed. We know that we could do it better, so I urge the Minister to read the recommendations put forward last year by the Health Committee and by the “Choice” review. In fact, I am sure that he has already done so. Almost 12 months have gone by, and this is a matter of urgency. It is quite shocking that we have not dealt with it before. I urge the Minister to look at the recommendations and to ensure that those who choose to die in their own homes in the community get the excellent care and support that they rightly deserve.
Mr Robert Syms (Poole) (Con)
This is a timely debate. We do not discuss this matter regularly, and I pay tribute to the Health Committee for producing its report. Having looked at the Official Report, I understand that the last debate on the subject took place in 2011. That debate concentrated on Great Yarmouth and Waveney. The subject deserves a lot more discussion because it affects many of our constituents and their families. If things go wrong at the end of life, it can leave the surviving partner and the family with a great sense of guilt. All of us have had people come into our surgeries who cannot get over the way in which a relative has been treated in these circumstances. It is absolutely vital for the wellbeing of the families that the Government get this policy right, so that they can move on and recover from the experience. Over the years, I have observed fantastic fundraisers for hospices in the community, and this is one area where the charity sector comes into its own, with rugby matches, cricket matches and jamborees. These things do get public support but it is sometimes a hard ask to keep raising the sort of money that they do. I therefore welcome the fact that the Government have increased the funding, although I think it is right and proper that they do not overdo it, because sometimes Government money can drive out money raised by the private sector.
Julian Knight (Solihull) (Con)
My hon. Friend is making a powerful contribution. Will he reflect on the importance of not only the care of the patient, but the care of the patient’s family at this most difficult time? The new state-of-the-art Marie Curie hospice in Solihull provides not only very good patient care, but a real home from home for relatives and patients at this most acute time.
Mr Syms
My hon. Friend makes a good point. What I have also noticed about the hospice movement is that many people go in for one or two days a week when they start to become ill. That not only makes them familiar with the hospice, but gives respite to the rest of the family, allowing the carer to do all the jobs they would otherwise have done if they were not caring for their relative. It means that they get more used to the environment, so when the final days come things are much easier for the family. Dealing with this situation and how the families feel is important. My hon. Friend the Member for Totnes (Dr Wollaston) mentioned the Liverpool pathway. All of us have constituents who have been worried about how their relatives were being treated at the end of their life, so I am glad that we have decided to phase that pathway out.
My principal point is to pay tribute to the wonderful fundraisers, the wonderful nurses and the charity organisations that do so much in our constituencies to make families feel at ease at this difficult time. I welcome the “Choice” review, which the Government have set up. It has come up with some sensible recommendations and I hope the Government respond to them soon, so that people can spend their final days with dignity, respect and a degree of privacy.
Over the years, I have been impressed by how people deal with the difficulties at the end of life. It is up to us, as politicians, to give people the maximum possible choice, so that they have the maximum possible control over those final few days and can discuss with their family what is going to happen. My hon. Friend made a good point about putting legal provision in place where people have dementia or Alzheimer’s—provision to do with wills and businesses—and all these things are important. Of course most people want to stay at home, and I perfectly understand that, but people often end up in hospital because the ambulance service picks them up in the last few days of their life.
A relatively small number of people die in hospices. As I say, the main benefit of the hospice movement is the day care and outreach it provides to the community, and the reassurance, support and experience it gives to the NHS. The charity sector and this sector are perfect examples of where private and charity bodies can work with the NHS, and may well sometimes be a model for other areas. This is Britain at its best. Tremendous people in all our constituencies are doing terribly well. However, I leave the Minister with the point that we have to respect individuals and families at this difficult time, and if we pick up some of the suggestions of the “Choice” review, we will be taking a real step forward on how people face a challenging occasion.
Kirsty Blackman (Aberdeen North) (SNP)
Thank you, Madam Deputy Speaker, for allowing me the opportunity to speak in this debate, during the second day of our consideration of the 2015-16 estimates. This is the fourth of our estimates debates and it is on end-of -life care. Supporting an individual at the end of their life is a difficult experience for all involved, be they family members, friends or healthcare workers. Health and social care services play a vital role in making palliative care as dignified as possible, and in ensuring that the patient’s wishes and needs are taken into account. The Liaison Committee has recommended that this important subject be debated today as part of the estimates process.
The Scottish Parliament is partly funded by a block grant. The change in this block grant is determined every year by the Barnett formula. In simple terms, the Barnett formula looks at the change in each Department’s funding in England for that year, and applies either an increase or a decrease in the level of funding that Scotland receives. The calculation takes into account the level of devolution of each Department, and allocates Scotland a population share on that basis.
The Department of Health, as it relates to end-of-life care, has a 100% comparability percentage when it comes to the calculation of Barnett consequentials, which means that any change in the departmental expenditure limit will have a full population share effect on the block grant for this area. Naturally, I was looking forward—indeed, I was on the edge of my seat—to scrutinising the changes that the Government were making to the budgets for end-of-life care. I picked up HC 747, “Central Government Supply Estimates 2015-16”, and flicked speedily to the Department of Health section on pages 97 to 112. Members can imagine my shock and disappointment when I found that the words “end-of -life care” were not mentioned anywhere in the booklet. It is a bit surprising considering that it is 736 pages long—one would have thought that end-of-life care would have appeared somewhere.
Then the Order Paper came out. Hurrah, thought I, this is my opportunity, because it mentioned a number of documents associated with end-of-life care. I thought that I could look at the budget in relation to end-of-life care and see what the knock-on effect would be for Scotland. I picked up all the various documents, but found that none of them lays out the budgetary spend, or the saving, associated with the changes. The documents do tackle major issues of great importance in relation to end-of-life care in NHS England. They highlight both the strengths and the weaknesses in current end-of-life care provision and lay out the UK Government’s plans to make changes, but they do not lay out the budgetary spend or saving associated with any of those changes.
End-of-life care is important to those many families and individuals who are struggling to come to terms with bad news, navigate the health and social care systems, ensure appropriate support is in place for themselves and their loved ones, and make plans and take decisions that they never dreamed they would have to make. It is important that Parliament ensures that end-of-life care is funded appropriately. I know that many Members want to talk about the issues that have to be faced and the ways to solve them—or at least how to alleviate the suffering a little for these families and individuals—but it is nigh on impossible for Parliament to provide appropriate scrutiny of the funding when we are not provided with the budgetary costs associated with the plans.
I want an increased spend in the Department of Health budget as it relates to end of life care, but I am struggling with these documents, as I cannot discover how much is currently being spent on it. Also, I am not allowed to table an amendment that proposes to increase Government spend in this area. If I desired to amend the total net budget of the Department of Health, which is £25,869,317,000, my only option would be to amend the budget downwards by £1,000. There are no other amendments that I can table in relation to this, so I cannot, during the estimates process, move an amendment to increase the Department of Health budget in relation to end-of-life care or to anything else and, consequentially, the Scottish block grant.
I am very pleased that we are discussing this vital and difficult issue, but I am distressed that we are not able to discuss in any detail the funding of this area, which is becoming increasingly important as our population ages.
John Howell (Henley) (Con)
It is a great pleasure to participate in this debate today. A number of common themes run through the debate, the first of which is the fact that most people want to die in their own beds. Before coming to this debate, I tried to find some statistics on the subject. I trawled through a whole lot of figures on the internet, and what I came up with was the fact that 70% of us want to die in our own beds, yet 60% of people die in hospital.
Why is there such a discrepancy in the figures? Is it a ridiculous aspiration for 70% of us to want to die in our beds, or do we need to be better at organising end-of-life care services? The evidence from the Netherlands suggests the latter In particular, there needs to be more emphasis on the social care aspect, the reorganisation of that and its delivery.
What does that come down to in practice? The issue came to the fore in my constituency with the re-provision of a hospital in Henley, the Townlands hospital. The hospital will be re-provided with a greater range of services for people to access and a limited number of beds at the side of the hospital in a care home. The gap is being taken up by a system that has come to be called ambulatory care, involving greater use of social care packages. This follows a change in practice, where the aim is to reduce the number of beds and keep people out of hospital for as long as possible.
Andrea Jenkyns (Morley and Outwood) (Con)
My own father died at home. The Government’s response to the report states that a priority is to ensure that families are kept in the loop in the final days, but in our case, we did not know it was my father’s final days. A nurse turned up on the last day with an end-of-life care kit. In front of my father she said, “Here’s the end-of-life care kit,” and he died a few hours later. Does my hon. Friend agree that better communication is needed with those who want to die at home?
John Howell
I thank my hon. Friend for making that point. As many hon. Members know, I recently lost my mother. Contrary to what I said earlier, she died in hospital, but I have to say that the services provided were exemplary. We were taken into the thinking of the clinicians as her illness progressed, we were told exactly what would happen, and this led to a greater feeling of comfort with the whole process when she eventually died. I am reconciled with the idea that it was what she wanted. That fits in with the idea of personal choice, where that is possible. In my mother’s case it was not possible because of the illness, but I do not know the circumstances of my hon. Friend’s case. It is something that needs to be borne in mind.
There are still those locally who cannot see that the best interests are served by reducing unnecessary admissions to hospital and moving people out of hospital as soon as possible. I have listened to the clinical advice and the clinical evidence that this is the best way to go. Hospitals, contrary to what they may seem, are not necessarily healthy institutions. Even a short stay reduces the ability of muscles to function and affects quality of life. I spoke to the Alzheimer’s Society about this. The evidence was clear: although admission to hospital or, better still, to care homes will inevitably be required, the best advice was to keep people out of hospital for as long as possible. That was true even in the case of people suffering from Alzheimer’s.
This approach is not just about providing services to those who need periodic treatment, especially end-of -life care. It demands a revolution in the way social care is provided. I am a great advocate of integrated social care and healthcare, and I have heard from doctors about the way in which they decide on the services to be provided. When somebody presents to them with an illness, whatever it might be, the choices are a medical solution—they can be shipped off to hospital or given a prescription—or a social care solution. The feedback I have received from doctors is that they do not have control over the social care aspect, they cannot provide the services and it is very difficult for individuals to access those services, particularly at weekends.
We need this revolution for better control of social care by clinical commissioning groups. We need this revolution for the better use of providing medicine in the home, for example by using internet services, as has been mentioned, which I think is a magnificent way to go. We need this revolution for the timeliness of the provision of services. I agree with my hon. Friend the Member for Poole (Mr Syms) that we need to work across organisations to get this right, including those in the charity sector. If we do that, we can get a really integrated approach.
Liz McInnes (Heywood and Middleton) (Lab)
It is a pleasure to take part in this debate and to follow the hon. Member for Henley (John Howell). When the House debated assisted dying last year, the point was made very strongly that good quality palliative care should be available to all; that at the end of life people deserve a good death, with access to palliative care and support; and that, rather than being subject to a postcode lottery, consistent, high quality end-of-life care should be available to all. Yet the quality of care and support that people and their families experience still varies significantly depending on where they live. Sadly, many people who would benefit from palliative care do not receive any at all. It is estimated that over 100,000 people a year in the UK—almost one in five of all deaths—would benefit from palliative care but do not receive it.
I want to talk about hospice care, as many Members have done. Hospice care forms a vital part of palliative care, supporting people through illness, the end of life, bereavement and into remembrance. It provides for the medical, emotional, social, practical, psychological and spiritual needs of individuals, as well as the needs of their family and carers. Although many might think of hospice care as in-patient care, in fact 90% of it is provided through day care and at-home services, enabling patients to stay in their own homes—many Members have mentioned how important that is—and giving much-needed respite for carers.
Hospice care relies heavily on the support of local communities; it is estimated that 125,000 volunteers donate their time and expertise to UK hospices. On average, Government funding covers only a third of the expenditure of hospices. My constituency is served by an excellent local hospice, Springhill, which works closely with the community and is well known and well respected. The cost of running the hospice exceeds £3 million a year, and 70% of the running costs comes from fundraising in the local community. Year on year, Springhill hospice has to attract 70% of its income through fundraising events, charity shops, lottery, legacies and donations. Like many local people, I am doing my bit to help this year by running the Manchester 10k in aid of the hospice.
Springhill, like most hospices, provides a wide range of services in addition to in-patient and out-patient services, all of which improve the end-of-life experience for both patients and their carers and families. As part of its education programme, the hospice has developed a palliative care education passport for staff in care and nursing homes, and it has just celebrated the first group of 34 staff who have completed the passport. To complete the passport, health and care staff must demonstrate kindness, as well as the skills, confidence and the application of knowledge in the care of those with palliative care needs; transferable skills that, once part of everyday practice, will enhance the care of all service users. That is just one example of a hospice working in partnership with other healthcare providers to deliver better care to more people and to help reduce pressure on the NHS. Such partnerships are vital to deliver the improved end- of-life care we all want to see.
Although we would all agree that our hospices are doing great work, I would like to take this opportunity to talk about statutory funding and commissioning arrangements for our local hospices. NHS and local authority funding for hospice care varies considerably between localities, and a variety of commissioning and contracting practices exists. More than two thirds of hospices had their funding from local CCGs frozen or cut in 2014-15, and more than eight in 10 hospices do not think they are funded fairly and sustainably by the NHS and local authorities. If the Government invested more in hospice care, they could reduce the number of people in hospital at the end of their life who had no clinical need, and no wish, to be there. That would help to relieve the pressure on the NHS and the strain on A&E and acute wards, and it would improve the end-of -life experience for the patient and their family.
I cannot talk about end-of -life care without paying tribute to the work of Marie Curie and Macmillan nurses, without whom patients are more likely to use A&E services and to spend longer in hospital. Although a small number of people would prefer to die in hospital, that is the least preferred option for the majority. As the Chair of the Select Committee mentioned, the Nuffield Trust has shown that using the Marie Curie nursing service results in a £500 reduction in total care costs per person. That cost saving can be replicated by other palliative care providers, meaning that investing in community-based palliative care can save the NHS money and reduce pressure on hospitals.
Changing demographics mean that the situation around end of life care will get worse. By 2040, an extra 100,000 people will die each year. The number of people with long-term conditions will have grown from 1.9 million in 2008 to 2.9 million in 2018. Unless the Government take action now to improve access to palliative care, the situation can only get worse, not better.
Helen Whately (Faversham and Mid Kent) (Con)
I welcome this debate, not least because end-of-life care, or death, is something we as a society tend to avoid talking about, and there are parallels with mental health. Another parallel is that, like mental health, this issue is too often overlooked in our healthcare system. Talking about it here is therefore a step in the right direction.
It is of course good to see that the UK ranks No. 1 in international studies, as other hon. Members have said, but we know that we as a society do not do end-of-life care well enough—in fact, too often we do it badly. One reason that many constituents wrote to me before the assisted dying debate to support assisted dying was that they lacked confidence in the system’s provision of end- of-life care and were not confident that they would have the chance of a good death. As many of us know, it is possible to have a good death, and that is what is experienced in many hospices, which do excellent work, as well as, sometimes, in hospitals and care homes.
Too few people die where they want to, quite apart from the quality of the experience they have. For example, only 6% of over-75s in Kent want to die in hospital, yet 40% actually die there. Some 86% want to die at home or in a hospice, but only 29% die in either of those places.
Every year about 500,000 people die in the UK. As the hon. Member for Heywood and Middleton (Liz McInnes) said, about one in five of them do not even receive palliative care. Those 500,000 people have family and friends who are affected by their death, so quality of death, on the basis of scale alone, should be a priority. In their final weeks and months, most people are highly dependent on the NHS, and there are frequent emergency hospital admissions for people towards the end of their life. Those hospital admissions account for 70% of health costs in their last three months of life. Unnecessary admissions to hospital are not only a bad experience for many individuals towards the end of their life, but expensive, and the NHS has scarce resources. That is another reason why it should be a priority to prevent people from dying in hospital when they do not want or need to. The question is whether it is yet a priority. The Public Administration Committee heard evidence that end-of-life care was still consistently overlooked across the NHS.
For the situation to improve, four things need to happen. There needs to be a focus on it from the very top of the NHS—from the leadership and from Government. There needs to be investment in capabilities to give people a better quality of death—not only capabilities of staff in terms of their skills, but in the technology that is needed. There needs to be better learning from what works; many places around the country, and internationally, do this well. There needs to be much greater transparency and measurement of where it is going well and where it is being done badly, and accountability on quality.
On the technology point, many people lack a plan for how they want to die, yet that that can make a real difference. In the absence of a plan, there is often a default response when something happens to somebody who is frail and possibly close to death: an ambulance is called, they are taken to A and E, and they end up in the acute ward of a hospital and may never leave. Only last week, I spoke to a local GP who was very frustrated about this happening to his patients. He has often discussed with them what they would like to happen if their end of life is approaching, and sometimes even written it down. However, too often, in the moment of crisis, what he has written down makes no difference at all, because the people on the scene at the time—for instance, if an ambulance is called out of hours—do not have access to the plan that he has discussed with the patient.
That said, the GP was optimistic that this could change, because his CCG, NHS West Kent, is implementing an electronic care broadcasting system whereby other doctors, A and E and the ambulance staff would be able to access what the patient had said they wanted to happen in that situation. There is strong evidence of the benefits of such systems, which means that far more people are able to die in their preferred place. In some cases, this has resulted in the number of people getting to die in their preferred place of death rising to about 80%, and brought hospital deaths down from the average of about 53% across the country to below 40%, or even as low as 4%. Implementing such systems should therefore be a priority, as should learning from where they are going well.
Transparency and monitoring are a crucial part of improving end-of-life care. We need more transparency. We need to know about the variability that has been mentioned. As MPs, we need to know how good the end-of-life care is for our constituents. I welcome the CQC’s increased attention to end-of-life care, but there are yawning gaps in reporting on quality. There is great inconsistency between what is reported in different areas and different institutions, and between CCGs, and relatively little is reported consistently at a national level. There needs to be a much greater focus on reporting. That was one of the recommendations in the Select Committee’s report, and NHS IQ—Improving Quality—looked at it before being transferred into NHS England. I would be grateful if my hon. Friend the Minister updated us on what is going on with regard to transparency on quality of end-of-life care, as I know that this Government do understand the importance of transparency.
All of us here today know that end-of-life care must improve; that this affects hundreds of thousands of people every year; that improving it will require continued and greater leadership and focus from the very top of the NHS and from Government; that investment will be required in capabilities and in technology, and should also lead to some cost savings; that there should be greater transparency, monitoring and accountability in respect of quality; and that there should be more, and more effective, sharing of the success stories and evidence of what works. Those things would mean that end-of -life care really was a priority for the health and care system, and that it should improve.
Kelvin Hopkins (Luton North) (Lab)
I am pleased to have the opportunity to speak in this important debate, although I will not speak for too long. I have long been concerned about the long-term care of the elderly and have tabled many early-day motions in the past, including following the royal commission report in the late 1990s. The then Government went to great lengths to ensure that the report was not agreed unanimously, because they did not want to accept its recommendation for free long-term care for everyone, whether they be in residential care, at home or elsewhere. My early-day motion following that Government decision was supported and signed by more than 100 hon. Members, so my concern was shared across the House.
The Health Committee’s report “Dying without dignity” is admirable, and I congratulate the hon. Member for Totnes (Dr Wollaston) and her Committee on producing it. It recommends free social care, which I am very pleased about. The reports by the Public Administration and Constitutional Affairs Committee, of which I have the honour to be a member, are also relevant to long-term care. The Chair of the Committee is going to speak later, so I will not talk about them too much. “Investigating clinical incidents in the NHS” focuses on the appalling number of deaths and refers to the Mid Staffs hospital disaster, which was shameful.
Subsequent to the Government’s refusal to pay for long-term care, there have been a series of forced privatisations of local authority care homes, which I opposed. In my own constituency, three first-class local authority care homes, where people would spend the last days of their lives, were forced to close and the residents were handed over to the private sector, which is driven by profit rather than concern for care alone. Some of the private homes are very good, but some are not. There have been some serious, well-publicised lapses of care, and there has been an ongoing crisis in the care homes world. I am concerned about that.
We congratulate ourselves on how we care for our elderly, particularly in the last days of their lives, but the situation is not all good. Some hon. Members have referred to the problems, including people not getting the palliative care they deserve and need. That is deeply worrying. We are all going to die one day and some of us are closer to that time than others, and we want to make sure that we and our families are cared for properly in those last difficult days. The subject needs more debate, more Government action and more support.
The reports are concerned about compassion. Undoubtedly, medical and care staff are overwhelmingly compassionate people, but it is not good that they are being put under pressure and made to work long hours; that they have too many residents to care for in the homes; and that they are being rushed because of concerns about costs and the desire to maximise profits. That means that people suffer. We have all had cases—I certainly have—where people have not been treated well in their homes or have not had the right care in a hospital or a care home simply because the staff are under pressure. People’s compassion starts to be diminished when they feel they are being pressured and not being treated with respect. Pay is one thing, but compassion is damaged when a staff member is looking after too many patients or residents, or rushing around too many homes with elderly single people who are in their last days. We have to make sure that compassion is to the fore in all these matters.
I have also said on many occasions that we do not spend enough on health and social care in general. We are rightly proud of the national health service and the principles on which it is based, but it is underfunded. We spend at least 2% less of our GDP—about £35 billion a year less—on health than France or Germany. With an injection of £35 billion a year, some of the stresses that cause the problems in hospitals in particular would go away. I also think, and said to my right hon. Friend the Member for Leigh (Andy Burnham) before the last election, that long-term care of all kinds ought to be provided on precisely the same basis as the national health service, completely free at the point of need. I believe that it should be provided by public servants rather than by the private sector. Only when we accept that we have to pay properly for the health and care service and resource it appropriately—that we have to pay people properly and make sure that we have enough staff—will we ensure that elderly people are cared for when they are alive, and that they die a dignified, pain-free and suffering-free death.
I will leave it there, although I would like to say a lot more. I hope that other Members will support some of the things that I have said.
John Glen (Salisbury) (Con)
It is a great pleasure to make a modest contribution to the debate. When I speak on matters to do with the NHS, the emphasis always seems to be on more resources, greater transparency, greater accountability and greater universal provision of reliable quality. Everything is important in the NHS—everything is a priority—but the resources are not infinite.
End-of-life care is a painful and emotive subject that is difficult to get right. As has been mentioned, about half a million—I think the actual figure was 470,000—people died in this country in 2014. They died in different circumstances, with wide variations in their experiences of what the NHS was able to offer. In my constituency, I acknowledge not only an excellent hospital and a number of GPs, but a high level of respect in our community for Salisbury hospice. One of the challenges is to arrive at a settlement that makes clear where the boundaries of responsibility lie between funding from the NHS and the charity element. Clearly, there is a massive amount of good will, but that must not be abused.
The national director at Hospice UK has said:
“The things that make a better death are so simple. It’s basic knowledge about good pain control and conversations with people about the things that matter”.
That goes to the heart of what is required. It will be about resources, to some extent. It will be about transparency, and greater reliability and sufficiency of provision. But it will also be about us, as leaders in our communities, being able to speak about our constituents’ experience of dying. Just as we put great emphasis on the provision of wills to ensure that people’s estates are in good shape, we need to ask people what choices they want to make about the way in which they are looked after and cared for in their last days. We need to ensure that people have greater awareness and make more informed choices so that we can make a better estimate of how to allocate resources and better integrate the different elements in our society.
One challenge that has frustrated me concerns free social care at the end of life. The Select Committee recommends in its excellent report that
“the Government clarify the eligibility criteria for the NHS Continuing Healthcare Fast Track Pathway”.
Some of my constituents have waited far too long to have such matters resolved; for example, I raised the situation of the Vaughans last week in business questions. Ambiguity and long delays in sorting things out cause enormous distress to families who are trying to make sensible provision.
I recognise the great emphasis that is placed on dying at home, and the tragedy that almost half—47%—of the 470,000 people who died in 2014 died in hospital, although the latest survey shows that only 3% of people who stated a preference wanted to die in hospital. By any measure, that is a failure of society, Governments and us all in not delivering what people want. That is not efficient for public services—it is more expensive—but it is also really unpleasant for the families involved when they cannot deliver what their loved ones want.
I hope that the Government will be able to give real and costed responses to the report and to all the various groups that have commented on the need for greater clarity about the Government’s intentions. Our constituents need that, and we need to do more to ensure that this does not become a taboo subject, but one on which there is greater engagement, so that we can secure better outcomes for those who are dying and for their families.
Jim Shannon (Strangford) (DUP)
Thank you, Mr Deputy Speaker, for giving me the chance to speak on this issue. According to the End of Life Care Coalition, in the 12 months since the “Choice” review was published, almost 50,000 people experienced poor care during the last three months of their lives.
Some right hon. and hon. Members have clearly said that they are speaking from a family point of view, and I heard some of their speeches in the Chamber. Twelve months ago today my father passed away. My dad always wanted to die at home, but that was not possible. He had fallen out of bed and broken his femur. It was quite impossible for my mum to give him the care that he had to have, so he passed away in hospital. I have some experience of end-of-life care in hospitals, and I must say that I commend those involved: first, my mother, who was very loyally and religiously attentive to him, but also the nurses, who particularly helped and were very attentive and caring.
The 2015 report from the Parliamentary and Health Service Ombudsman, “Dying without dignity”, demonstrated the consequences of people dying without access to high-quality care and support. It highlighted cases where people had died in distressing circumstances, which had a lasting impact on their friends and families. That is what we are focusing on today. Unfortunately, research by the London School of Economics suggests that such situations are not as rare as they should be. The people who tend to miss out on palliative care are those with conditions other than cancer, those over the age of 85, single people and people from black and minority ethnic communities. Quite clearly, those are issues.
Research conducted by Ipsos MORI and Marie Curie—many of us met those from Marie Curie in Parliament yesterday—have found that seven out of 10 carers thought that people with a terminal illness were not getting all the care and support that they need. I commend the Marie Curie nurses for the hard and very attentive work that they do. Again, I have experienced that personally because a good friend of mine, Irene Brown, passed away just last week. Marie Curie helped her and her family greatly near the end of her life.
We have had ongoing worries and troubles about care homes in my constituency, with the threat of closures compounding the misery for people who need help the most and who already have to deal with an over-pressed and strained health service. I have to say, with respect, that the fact that such issues are not at the top of the priority list only serves to strengthen the disillusionment with the Government.
Alison Thewliss (Glasgow Central) (SNP)
Does the hon. Gentleman share my concern, which was highlighted by some of the Marie Curie nurses I met, that while they very much want to do an excellent job in looking after they people they serve, they cannot do so all week but only on a couple of days, with less experienced staff coming in to fill in the gaps?
Jim Shannon
I obviously agree with the hon. Lady. I understand exactly what she says, as I think does everyone in the House. The Marie Curie nurses are special nurses and they do a grand job.
The issue of state-assisted suicide has been mentioned. We have had a debate in the House and a clear decision has been made, by an outstanding majority, that there is no need for it, and we will keep that going. We do not need to discuss the matter, because it has already been decided.
I want to refer quickly to the significant improvements to end-of-life care in Northern Ireland with the ambitious “Transforming your care” plan. Although there is still a long way to go, I ask the Minister sitting on the Front Bench, who is always very responsive, to look at what all the devolved regions have been doing, not least Northern Ireland, to ensure that the best strategy known and available nationwide is being implemented so that the figures I led with are reduced as much as possible and as fast as possible. We all know people or have known people going through this period of their life and, young or old, it is a reality that all of us will face some day. The UK Government and the devolved Governments need to do better on this issue to give ordinary, everyday, hard-working people the treatment they deserve at such a distressing time.
I will conclude on this point because I am conscious that other Members wish to speak. If the Government have been taking action on this issue, they need to make that clear and publicise it, despite the obvious delay. In other words, are the Government giving end-of-life care the focus and money it needs, and are they working with charities and hospices to ensure that it is delivered? It is true that there should be no timescale for coming up with the best solution, but it is equally true that there has been insufficient explanation as to why the timescale has been delayed. I know that the Minister will respond to that. That delay is compounding the misery for people who are affected by this issue and their families. When it comes to end-of-life care, let us ensure that we deliver for our constituents.
John Redwood (Wokingham) (Con)
I will draw on conversations that I have had with people around the country who have experienced a relative dying fairly recently, as well as on my own observations. I will not mention a particular case, because if I did have a difficult case, I would take it up privately in the usual way.
The first conclusion that I have formed, which I think the Secretary of State has wisely come to, is that a patient undergoing the last stages of their life and their family need a named doctor who is in charge. The family and the patient, when the patient has capacity, need to have access at reasonable times to that doctor to find out where they have got to and what the next stage is likely to be.
I believe that Ministers have put in place a requirement for there to be a named general practitioner for every patient when they are at home or in a care home. That is very welcome and let us hope that it works, so that there is someone people can turn to, whom they trust and know. However, when, as so often happens, people enter hospital and may not come out again, because of the way in which rosters and rotas work, it means that every day or every other day there is a different group of doctors and nurses in charge of them.
That can mean one of two things. Sometimes, the family and/or the patient are constantly retold very bad news because the new team feels that they have a duty to tell them. It may not be helpful for people to keep getting the same bad news. Alternatively, the family or the patient with capacity may want information at a particular time, but no one is up to speed because they have only recently taken over and have not had time to read the notes. Indeed, reading the notes is not necessarily as good as being continuously in charge of the patient and talking to them over the days or weeks in which the treatment is undertaken or as their last days draw near. I therefore urge Ministers to get behind the idea that it is best if there is a named senior doctor—perhaps a consultant or registrar.
Often, people in their last few weeks or months of life have complex and multiple medical conditions, so a series of different consultants are involved, but no one consultant feels as if they are ultimately in charge. I am told that in some hospitals patients are moved from ward to ward at very short notice, with different specialties in mind. The family then turn up and do not even know where the patient is, because they think that they will be where they last saw them. That can be very disruptive for the family. More care and attention is needed in some cases to deal with that issue.
The second issue, which has been mentioned by other colleagues, is the interface between social care and hospitals. All of us who visit hospitals as Members of Parliament and sometimes as family members will have observed that a very large number of patients in a lot of our wards are extremely elderly and very frail, with lots of complex medical conditions. Some of them may not be easy to treat. Others might be better off in a care home or at home, but there has been a failure to put together the set of services that they need.
I do not really believe that that is a money issue, because in many cases one could buy an awful lot of social care for the cost of the hospital bed that the person is occupying. Social care might even be cheaper. I am not recommending that we take people out of hospital because somewhere else is cheaper, but if they would be better off somewhere else, if they want to be somewhere else and if there are no longer any medical interventions that the hospital can make, it is sensible to take advantage of social care if it is also cheaper.
Kelvin Hopkins
I hear what the right hon. Gentleman says, but when local authorities know that they have to pay for care when somebody comes out of hospital, they will try to persuade them to stay in hospital for as long as possible. Different budgets put different pressures on different institutions.
John Redwood
The hon. Gentleman is right. Throughout the time he and I have been in the House, under Governments of different persuasions, we have all known about the problem, we have all said that we need to solve it and still we have not managed to do that. I hope that our current talented Ministers can do something that no previous groups of Ministers have been able to achieve. There is an experiment because, with the devolution models that Ministers are considering, if the health and social care budgets are put together under the same authority, the excuse that there is a budget row goes. One would hope that the best interests of the patient were dominant and that authorities would realise that, in some cases, the best interests of the patient also enabled them to save money through switching from an expensive hospital bed to a decent care package. That could be helpful, and I hope that Ministers will do that.
For the families of those who die, the need for care does not end at the moment of death. That is generally understood by the public sector, but there are serious problems with delivering the support and administrative back-up that families need when a loved one dies. Several people who have been through this recently told me that the first thing that happens is a delay in getting a death certificate. Without a death certificate, nothing can be done to settle things. People cannot even hold a funeral because they cannot instruct a funeral director until they have a death certificate.
Not only is there a delay in getting the death certificate from the medical staff at the hospital, but people cannot register the death because of the insistence on a face-to-face meeting with the registrar, which can mean a further delay of many days before a slot becomes available. Quite a lot of families therefore end up with one, two, three and four weeks of delay before they get the death certificate, which is necessary to trigger the funeral and any financial changes consequent on a person’s death.
The Government have introduced a sensible “Tell Us Once” system so that when a person dies, the family can fill in quite a complicated electronic form, which is meant to tell all Departments with which the dead person may have been involved what the Government need to know. There are two problems with that. First, families often do not have all the knowledge that they need. Unless they have that knowledge, the Government seem unable to cross-refer and discover that, for example, the person had a benefit as well as a pension. It would be helpful if Government computers talked to each other more adequately so that the Government could do more of the work and families just had to notify them of the death and did not have to know every detail of the dead person’s financial affairs.
Secondly, because the delays with the death certificate and registrar appointments often mean that registration of the death is delayed, the Government make payments to the deceased person, and the families, having used “Tell Us Once”, get a set of not terribly friendly letters—I appreciate that they have been dressed up a bit—saying, “Your dead relative owes us this much money”. The families cannot necessarily get their hands on that money, but they are none the less obliged to pay the Government back, at an unsettling time when they are mourning and grieving and were not expecting a tax or benefit bill.
In the interests of handling the families better, the Government should speed up their side of the administration so that the death can be registered promptly, the Government do not make wrong payments and the families are not faced with letters demanding money back when they have other things on their mind and are trying to deal with the hurt. It does not make it better when the Government say, “We’re very sorry you’ve had a loss” if they go on to say, “but you owe us this much money. The usual rules apply. See you in prison if you don’t pay”.
We need to improve greatly on dealing with the first few weeks for the poor grieving families, who do not necessarily know the process, are very lost because they have lost their loved one, and are not helped by delays and sometimes the incompetence of the regulatory authorities.
Maria Caulfield (Lewes) (Con)
I thank my hon. Friend the Member for Totnes (Dr Wollaston) for her excellent work in leading the Health Committee. I will not repeat points that a number of Members have raised, but there is a consensus that the issue of end-of -life care is growing in prominence and importance. The debate on assisted dying last September drove that discussion, and since then a number of Adjournment debates have focused on why end-of-life care is so important.
We know that 480,000 deaths a year occur in England and according to Macmillan Cancer Support, only 53% of people die in a place of their choice. We know that there are gaps in provision—not just in access and quality, but also according to disease type. As a cancer nurse, I was fortunate to have access to excellent palliative care, not just locally but for patients nationally. However, for those suffering from many other diseases, such as multiple sclerosis, Parkinson’s or Alzheimer’s, there is little or no access to good end-of-life care. As a result, there have been a number of reviews. We heard about the “Choice” review, which identified gaps and gave some solutions for meeting them, and last year the Health Committee delivered its report on how end-of -life care could be improved. The report by the Parliamentary Health Service Ombudsman, “Dying without dignity”, identified the same gaps. We know what the problems are, and now we need to deliver the solutions.
As this is an estimates debate, I will flag up the figures in those reports. We must invest £400 million annually in NHS community services to move end-of-life care out of hospitals—where most people do not want to die—and into the community, and we need roughly £100 million each year for local social services to provide the social care to back that up. That would deliver a saving of £370 million for the NHS and the acute services that are now picking those people up, but from my experience I think the savings will actually be much higher.
In the short time I have been an MP, many constituents have written to me, including an elderly gentleman of 92, who, a couple of weeks before the last Christmas that he would spend with his family, was stuck in hospital—not because of symptom or pain control, but for the lack of a feeding pump. He had a feeding pump in hospital, but because he wanted to go home to die and the community did not have one, he had to stay in hospital. That cost thousands of pounds a day, but more importantly it took precious time away from him and his family, just for the lack of a feeding pump. Such things cost a few pounds—I would have given the money myself if that is what it would have taken.
We know that £500 million would deliver district nurses to provide care, pharmacists, social services, and not just the seven-day-a-week NHS that we are proud we want to achieve, but the 24-hour care that most of those patients need. That would improve care and choice for those patients, and once that initial investment had been made, just £130 million a year would help to sustain it for health and social care. It would be money well spent if we could find it.
I bring good news for the Minister: we do not just need money. I make a plea for him to consider the Access to Palliative Care Bill that is currently finishing its passage through the other place, sponsored by Baroness Finlay. It shows that such an approach has a proven track record of delivering end-of-life care without needing a huge amount of investment, because it forces local CCGs to commission palliative care. That is what we are missing at the moment. Placing such care in the hands of CCGs makes them locally accountable, because what will deliver good palliative care in a London borough is very different from what will work in a rural constituency such as mine. It is important that CCGs take on that responsibility. I know from working in acute cancer care that unless something is commissioned and paid for, it does not happen.
Mr Robin Walker (Worcester) (Con)
My hon. Friend is making some excellent points. Does she recognise that there is a particular challenge when commissioners can seem almost to get something for nothing, with local hospices taking on more and more responsibility? It is important that local commissioners—wherever they are in the country—recognise that the services they rely on from hospices need to be paid for. As those services have increased in recent years, commissioners need to think about allocating more of their budget to them, which could then make savings for the other services that they commission.
Maria Caulfield
Absolutely. Those commissioning services realise their value. Hospices have taken up a lot of care. We all value our hospices, but that work is not necessarily valued financially. From working in cancer care, I know that my trust was commissioned to deliver day services, chemotherapy and radiotherapy. It was paid on a case-by-case basis. As soon as someone had finished their treatment and needed end-of-life care, however, everyone washed their hands of the responsibility because no one was getting paid for it. That is the reality of the situation. We need commissioning for end-of-life care to happen.
The Access to Palliative Care Bill, which has just gone through the other place, establishes four clear guidelines that would greatly improve end-of-life care without the money needed to back it up. First, on pain and symptom control, we should have an evidence base of what works for each disease and make sure that that is what happens. Secondly, there should be education and training for all staff and not just for those in end-of -life care. There is a huge amount of palliative and symptom control that staff, whatever their speciality—intensive care units, cardiac units, renal units and so on—can provide without needing specialist knowledge. All staff need to know is the point at which they need specialist advice. Simple education and training would enable that to happen and improve greatly the care that patients receive.
Research is the third guideline set out by Baroness Finlay in the Bill. Never underestimate the difference that research can make to end-of-life care. When I was a new nurse in the early ’90s, patients with hypercalcemia were admitted all the time. Hypercalcemia is when there is too much calcium in the bloodstream. Patients are confused and dehydrated, and they spend their last few days and weeks unable to communicate with their relatives. However, with research and the advent of bisphosphonates, it is very, very rare to see a case of hypercalcemia. Research into end-of-life care made that difference. Finally, as my hon. Friend the Member for Totnes pointed out, having the CQC inspect end-of-life care would make a huge difference, not just in the acute setting but across the board.
Other Members want to speak on this important subject, so I will just say that if the £500 million needed to implement the “Choice” review is not available, that should not stop us from improving end-of-life care. Many of the aspects of the Access to Palliative Care Bill would make a huge difference to patients and their families. I urge the Minister to consider them in his closing remarks.
Maggie Throup (Erewash) (Con)
I am pleased to be able to speak in this very important debate. It is pleasing that, as we have heard from so many other hon. Members, end-of-life care in the UK is ranked No. 1. That is not good enough, however, because there are so many variations across the whole of the UK. I am sure the reason why we are ranked No. 1 is mainly due to the wonderful hospice movement that we have heard so much about. It contributes so much to so many thousands of lives every day across the whole country. It is the medical professionals, the volunteers, the fundraisers and the donors who really make the difference. As I said, the system is not perfect and we still have an awfully long way to go. There are too many times when end-of-life care is a lottery, and that should not be the case.
My constituency has actually done quite well out of that lottery. We have an amazing hospice called Treetops Hospice Care. It is quite unusual because it does not have any beds. It provides all its care either as day care or in patients’ homes. As a consequence, the number of people who are able to die in their own homes in my constituency is much higher than in other parts of the country. In the past, Treetops has benefited from two lots of capital funding: in 2010 it managed to get capital funding to extend its day care centre; and in 2013 it got capital funding to build a counselling and bereavement centre, which has been so valuable to those who have suffered the loss of their loved ones. One of my messages for the Minister, therefore, is please do not forget about capital funding. It is so important to hospices across the whole country.
The chief executive of Treetops asked me to say that money invested in hospices often saves the NHS money because hospices can deliver end of life care so much more effectively. The NHS is not for the end of life; it is for acute episodes, not best designed for the time when people need to be in quite a different environment.
As other hon. Members have mentioned, we need to realise that hospices are not only for people with cancer; they are for people with life-limiting conditions. There still seems to be a bit of fear about this: if people are told that they need palliative care and end-of-life care and they do not have cancer, they get confused. We need to make sure that our messaging is a lot clearer.
My hon. Friend the Member for Totnes (Dr Wollaston) talked about gaps in the service. My local CCG acknowledged gaps in the services it was commissioning. It was lucky enough to get funding from Macmillan to look at how to pull together the end-of-life care it was able to commission. It realised that the issue is not always about commissioning hospital beds or drugs; it can be about something really simple.
People coming towards the end of their lives need extra laundry, and for the people who are caring for them, having to do all the laundry is, sadly, about the last straw when it comes to the caring commitments they make. Our CCG identified that a local charity, Community Concern Erewash, has a laundry service. The CCG is able to contract out to a local charity to provide the laundry service for those going through end-of-life care. This means that many more people will be able to stay in their own homes because those caring for them can provide the emotional care without being distracted by the need to provide laundry. That provides one practical example of how it is possible to invest money wisely to make end-of-life care so much better.
All too often, our focus is on end of life care for adults, but we must never forget the importance of providing choice and support for children and young people at the end of their lives and of the subsequent bereavement counselling for their families. I would like to take this opportunity to pay tribute to the work done by the organisation, Together for Short Lives, in providing such counselling. The more we discuss subjects such as end-of-life care in this place, the more open people become about talking about such a difficult subject; they feel more able to discuss it. We never used to discuss cancer, but now we do, so it will be possible for us to talk about end-of-life care in a much more open way. As individuals, as parents, as children and as spouses, we should be brave enough to talk about end of life.
Our healthcare professionals should also be brave enough to talk about the issues. I know from personal experience that when a Macmillan palliative care nurse had that conversation with my mum, it made the last few months of her life so much easier. It made it easier for us, too, as we no longer needed to tread carefully on the subject. Mum could openly talk about her wishes—what she wanted done with certain bits of jewellery, for example, and other things she wanted to communicate to us. When she did pass away six months after that initial conversation with the end-of-life care nurse, we knew her wishes and what to do, which made it easier for us.
Talking about end-of-life care and knowing the wishes of the patient makes it so much easier for the healthcare professionals and the relatives—and, most importantly, for the patients. We must do whatever is possible to make sure that the final wishes of those with terminal illnesses are met, so we can ensure that they can have good deaths.
Mr Bernard Jenkin (Harwich and North Essex) (Con)
I hardly feel worthy of catching your eye today, Mr Deputy Speaker, having not been in my place for a question earlier today. I apologise to you and to Mr Speaker for that. I was, in fact, preparing for this debate, as Chairman of my Select Committee. I commend my hon. Friend the Member for Totnes (Dr Wollaston), the Chair of the Health Select Committee, for her report and for securing time to debate end-of-life care on the Floor of the House.
I shall wantonly use this opportunity to promote one of the reports produced by my Select Committee, the then Public Administration Select Committee. I am not just talking about the report on dying with dignity, which followed a report by the Parliamentary and Health Service Ombudsman. That report underlines why my hon. Friend the Member for Totnes is absolutely on the right track in making her investigations.
We have urged the Government to recognise the shortcomings that exist in many of our health institutions. People are not recognised to be dying when they are dying, their symptoms are not addressed, and there is poor symptom control. People have watched loved ones dying in pain because of ineffective symptom management. As has been mentioned today, there has been poor communication. Professionals have failed to engage in open conversations with patients and family members. There have been inadequate out-of-hours services, and people have suffered because of difficulties in gaining access to palliative care out of hours. There has been poor care planning, and delays in diagnosis. And so it goes on.
What strikes me about so many of the accounts that we have heard this afternoon is the lack of learning, the sense of helplessness, the sense that this is just what happens in our health system. That is what drove my Committee, at the end of the last Parliament, to produce the report entitled “Investigating clinical incidents in the NHS”. Imagine what it would be like if we had an NHS in which, whenever something went wrong, there was a proper and open investigation, followed by learning from what had occurred—without blame—to prevent a repetition. So often, in debates such as this, we hear about the same things occurring again and again.
Our report revealed that
“there are 12,000 avoidable hospital deaths every year. More than 10,000 serious incidents are reported”
to the NHS, in England alone,
“out of a total of 1.4 million mostly low-harm or no-harm incidents annually. There were 338 recorded “never events” (such as wrong site surgery) during 2013-14”,
and there were 174,872 written complaints. The then latest estimate of clinical negligence liabilities on the NHS balance sheet was £26.1 billion. If we could get just 10% of that right, we would save millions of pounds. If we could avoid 10% of those incidents, we would save the NHS huge amounts of money.
We looked into the way in which other safety-critical industries dealt with safety management and incident investigation. The most notable is aviation, but similar considerations apply to marine accidents, accidents in the North sea oil industry, and the work of the Rail Accident Investigation Branch, which was set up after the Paddington rail crash. I learned a great deal when I was shadow Secretary of State for Transport at the time of that rail crash. For instance, I observed how hopeless it was that the safety regulator of the railway, the Health and Safety Executive, was responsible for investigating its own failings in the event of a rail accident.
The Committee concluded that what was needed was an independent clinical investigation service that would investigate untoward incidents in the health sector. It would have to have three key elements. First, it must provide a “safe space” in which clinicians, NHS managers, patients and patients’ families could discuss things without fear of recrimination or reprisals. Such a service does not currently exist in the health service. No one dares speak for fear of getting the blame. In aviation, it is quite normal for pilots to report each other and report themselves without fear or favour, because that safe space exists.
Secondly, the service
“must be independent of providers, commissioners and regulators”.
There is no such independent investigative capacity in the NHS. We have a higgledy-piggledy arrangement for investigating clinical incidents. It might be local, it might involve a regulator, but it ends up with the Secretary of State coming to the Dispatch Box and calling for a public inquiry. That is when we really know that it has all gone wrong. The Francis report was very much a jumping-off point for us.
The third requirement is that any such clinical incidents investigation service should have the power to publish reports and to disseminate its recommendations and learning. This should not be about blaming people; it should be about learning. I am very pleased that the Government accepted our recommendations and that they have set up an expert advisory group. The group has been holding discussions for many months on how to implement the proposals.
I am sad to say, however, that three things are still lacking from the Government’s proposals for what they are going to call the health safety investigation branch, which will operate in a clinical incident investigation capacity. The Government’s refusal to contemplate primary legislation on this matter means that there will be no safe space. Their refusal to create new public sector bodies outside the framework of the NHS will mean that the health safety improvement branch will be domiciled within NHS Improvement, which is one of the regulators from which it needs to be independent. And the Government’s refusal to contemplate primary legislation means, of course, that there will be no primary legislation.
I think the Minister understands these matters very well, but I have to say to him that if, having accepted our report, the Government go ahead and create the health safety investigation branch of the NHS on this basis, they will not be implementing our findings, which they say they have accepted. It is sad that we are going to lose the opportunity to do this, and I very much hope that the Government will continue to think about introducing at least a draft Bill that would enable us to work in the longer term towards the primary legislation that we need in order to set this up. That would transform lives, and the NHS, in a way that nothing else could do.
Dr James Davies (Vale of Clwyd) (Con)
I very much appreciate the opportunity to talk about this important topic today. As a GP, I have been involved in delivering palliative care—as has my wife, who is a district nurse. It was mentioned earlier that during the debates on the Assisted Dying (No. 2) Bill last year, end-of-life care was highlighted as an important topic that needed to be discussed. We have a world-class palliative care service in parts of this country. Indeed, many other countries look at our hospice movement and want to adopt it for themselves. My local hospice, St Kentigern, which I visited recently, provides excellent care as well as guidance to clinicians, as do so many hospices. However, there are variations in different areas of our country, between the care provided by different clinicians and between the palliative care available for differing conditions.
I have joined the Health Committee since the general election, so I was not part of the inquiry that led to the report. I do not intend to provide an exhaustive list of issues that I feel need addressing, but I thought it might be helpful to give the House a GP’s perspective on some issues that are important to me. The lack of prior planning and discussion for patients is a very real issue. There is certainly a need for more information for patients, carers and family members. It is worth noting, however, that health policy can influence patients’ awareness of developing conditions, and I would like to mention dementia in this context.
The Government have focused on dementia in recent times, and the Prime Minister’s challenge has been quite successful in increasing diagnosis rates. The rate has now gone up to about 67%. A diagnosis gives patients the opportunity to look to the future and decide how they see the end of their life. Sadly, the diagnosis rate in my area of Wales is only 43%, which shows how health policy can influence the debate in many ways.
Care homes are clearly critical to end-of-life care. My practice certainly felt that it was able to contribute to this domain through a local enhanced service that allowed oversight by one practice and continuity of care, which is extremely important. That service also helped to prevent unnecessary admissions to hospitals. It resulted in better opportunities for staff training.
Clearly, there is pressure on hospice beds and community hospital beds. There is also a need to address privacy in the acute secondary hospital setting, where hospital is the right place for end-of-life care. We know that so many patients wish to die at home, and out-of-hours services are crucial to that. We have heard a lot about a seven-day NHS in recent times and this is one crucial area where providing services at weekends and in the evenings is so important. If a patient is waiting for a delayed period for a syringe driver, for instance, that prolongs their discomfort. We also know that there are limited community services in some instances, particularly for children.
I have seen discharge liaison services in hospitals moving heaven and earth to meet patients’ wishes and allow a death at home. Those need to be focused upon to ensure that, wherever possible, that can take place, with adequate support for carers once the patient is discharged home. Finally, clinicians need the confidence to identify what constitutes an end-of-life situation and to manage it appropriately, and so clearly there is a need for education. One in five of those who die is not receiving the end of life care that it is felt they should receive, so clearly there is still much work to be done, despite the best efforts of so many in this country.
Dr Philippa Whitford (Central Ayrshire) (SNP)
As has been mentioned by several Members, we all share one thing in common: we are all mortal. Although some people think they are not, we will all die. In this House, we make decisions about provision for things that might happen, but this is something that absolutely will happen to all of us and so we all have a vested interest in making sure those services are as good as possible. Three quarters of people who die do so expectedly, which means they die of an ongoing illness they already have. About a third of those are cancer patients, and the palliative care system has focused on them since its inception in the 1960s. As has been said, we should rightly be proud of the fact that the UK is listed as No. 1, but that is largely to do with inputs and resources; it is not always to do with outcomes, because we cannot always measure those. A lot of that top position we owe to the hospice movement. We owe it to people such as Dame Cicely Saunders at St Christopher’s hospice. Everyone here knows my background, but even when I was a medical student this was my interest. My fourth year dissertation, “On Death and Dying—Home, Hospice, Hospital”, was written at a time when we had hardly any hospices and this was a new-fangled specialty.
The problem is that that is not the choice people are getting, as we have heard from Members from across the House. In Scotland, we did an audit in 2010 and again in 2013 which involved every single person in hospital on one day and following them up for a year. That showed that a third of people in hospital—it was exactly the same both years—will die within a year. That backs up a well-known fact that the majority of healthcare is spent on people in the last year of their lives. Some 10% of those people actually died on that admission, and the average stay of someone who dies in hospital is about two weeks. Some of those will be deaths we did not expect—they will be things that went wrong. However, a lot of them—three quarters—will be people with an expected illness. It is not just wasteful and it is not just futile, but for the family and the patient it is distressing.
We have heard about how people get stuck in hospital when they would like to be somewhere else. The question is: why? The No. 1 reason is that we do not talk about it; the family have not talked to the patient and the patient has not talked to the doctor—nobody has broached the subject. As someone who has been a cancer surgeon for 30 years, I know that it is difficult. I have often had to help families and patients open that conversation. There are people who say, “I won’t tell my mother”, or, “I won’t tell the children.” The family needs to be front and centre with this. One of the advantages of being at home is that people are in their own intimate space together. They have one luxury: the opportunity to say goodbye. People may have a row, go out the door, slam it and never come back. That is the worst loss. People need a chance to prepare. They need to make sure that they are at peace, that everything is organised, that they are not worrying and fretting, and that their families have the chance to say that they love each other. There is also the need to reconcile. Perhaps that person who went off in a huff 20 years ago comes back. That last bit of time is very precious.
In 2010, Scotland conducted a review of the “do not resuscitate” policy. We moved to what was described as best practice. That answers some of the issues raised by the hon. Member for Faversham and Mid Kent (Helen Whately)—people being scooped up by the ambulance and taken somewhere else. This was not just a tick box that the nurse or the doctor went through; it was a discussion that was shared with everyone.
The core person in all this is the GP. The GP provides the continuity. In Scotland, the summary care record is used for out-of-hours care. The GP must register a patient on the palliative care register, and that is automatically shared. If, at the weekend, someone is called in, they know what the aim is, which is that that person wants to die at home. If someone has been kept at home for months with lots of support, there is then nothing worse than if, in the last 24 hours, the family panics—“Mum’s got worse. What do I do? Dial 999”—and the person ends up in an ambulance and then in hospital. That is just a disaster.
As the hon. Member for Totnes (Dr Wollaston) said, we need to tackle training. We need to train our students, our doctors, our nurses and our carers in all the settings, because people will die in all the settings. People will still die in hospital. That is unavoidable, as was said by the hon. Member for Strangford (Jim Shannon), who is no longer in his place, but it is not an excuse for poor care or poor communication.
Ayr hospice in my constituency provides the liaison services to the hospital in which I worked, so we had palliative care consultants, liaison nurses and training for other staff. We also have a beautiful hospice that provides outreach and home care, and is trying to educate the whole community.
In Scotland, the funding of hospices is 50:50, whereas here, as we have heard, the average is a third, so it is very variable. Hospices now talk about the increased complexity of commissioning. Many of them deal with multiple clinical commissioning groups—the average is four—and they feel that they are having to jump through many hoops in exchange for whatever bit of finance they get. Hospices need to be put on a safe financial basis, and they also need to be able to plan their funding for the future.
We must not forget the care home. By 2030, a quarter of us will die in a care home, and that is the thing that many of us are most frightened of. That is because we have a sense of it as a place that we are tidied away to, and we fear that. We need to improve the quality of care homes and to individualise the care. We also need to introduce this end of life and palliative care philosophy to those homes.
Of course, the prize is dying at home. That is what 80% of people choose. In Scotland, we are lucky because we already have free personal care. Patients who are under 65 and have had a DS1500, which defines them as within six months of death, get free social care. We do not have the barrier that there is in England of either the difficulty of paying or the sheer time it takes to go through means-testing to get care organised. None the less, we have our challenges. The social care has to be in place. We know that all local authorities are struggling to balance their budgets. As has been mentioned by Macmillan, Marie Curie, Nuffield and the palliative care review five years ago, this would save money in the long term. However, the money cannot just be taken from the hospital and given to social care or to palliative care, because the hospital would fall over. We have to double-invest initially because, as with a Rubik’s cube, we need that little bit of space to move the first piece before anything else will happen.
This has been going around since 2011, and we are calling on the Minister to grasp the nettle and rise to the challenge. We need to follow the patient and support them through the whole journey and, as was mentioned, to support people after that journey through bereavement, to ensure that they have access to support and are not left struggling after the loss of a loved one.
It is well known that people will cope with bereavement better if their loved one has had a good journey. As was mentioned, in the assisted dying debate we threw down the challenge that if we voted against that, we had to provide high quality palliative care, to allow people to end their journey not in fear, not in pain and not feeling a burden. I call on the Minister and the Government to rise to that challenge.
Barbara Keeley (Worsley and Eccles South) (Lab)
I join other Members in thanking the Chairs of the Select Committees for the work on the reports that we are debating today. I was a member of the Health Committee when it produced the end-of-life care report.
Although Ministers have talked of rising to the challenge of improving palliative care, they have yet to take the action needed. They have not responded to the independent panel’s “Choice” review report published in February 2015. I know that the Minister and his colleagues repeatedly promised to respond to that report by the end of 2015, although I note that the Minister has recently changed to saying they will respond “soon”. The hon. Member for Strangford (Jim Shannon) noted that 48,000 people have experienced poor end-of-life care since the “Choice” review was published. Given that figure, we need a swift Government response now, and I ask the Minister to tell us when he expects that response.
As many Members have mentioned, the palliative care workforce works extremely hard to provide good care for people nearing the end of their life. We owe a debt of gratitude to our hospices, palliative care staff in hospitals, and Macmillan and Marie Curie nurses, because when end-of-life care is delivered well, the benefits to the patient and the family are immeasurable; when it is delivered badly, it can cause considerable pain and distress to those involved.
Even though we have the excellent St Ann’s hospice in my constituency and we have one of the best hospitals in the country in Salford, I have dealt with cases in my constituency where end-of-life care has not been delivered as it should have been, leaving bereaved family members distressed and anguished. The National Council for Palliative Care has said that despite high aspirations,
“there is still unacceptable variation, which would not be tolerated in any other area of practice.”
The ombudsman’s report shows us the consequences of people dying without access to high-quality care and support.
In my constituency I have had cases with similar failures to those that the ombudsman highlights—not recognising that the patient is dying, not responding to their needs, poor symptom control, poor communication and inadequate out-of-hours services. One of the cases I dealt with happened in 2005 and was included in a previous report by the ombudsman. Another occurred in 2013. It worries me that I have had constituents suffering the same heartache caused by poor end of life care when it is clear what needs to be done to improve their care.
My constituents died without dignity and in pain. Their carers and family members were left to run around trying to find suitable pain control for them, which meant that they lost the chance to spend precious time with the family member who was dying. The SNP spokesperson, the hon. Member for Central Ayrshire (Dr Whitford), has just highlighted for us how important it is to have those last few hours with a loved one. The Health Committee report recommended that a named clinician support the co-ordination of care. Clearly, that would help in so many cases, and the idea was supported by the right hon. Member for Wokingham (John Redwood).
We know that each year around 500,000 people die in England and Wales and half of those deaths occur in hospitals, so we must make sure that end-of-life care is fit for purpose in all settings and that staff are trained to recognise when someone is nearing the end of life. However, the End of Life Care Coalition tells us that NHS England has made no substantial move to invest in palliative or end-of-life care. Investment in those services is essential to ensure that they are co-ordinated and that people receive the correct care wherever they are.
The Health Committee report asks the Government and NHS England to set out how universal, seven-day access to palliative care could become available to all patients, including patients with a non-cancer diagnosis. Marie Curie tells us that only one in five trusts in England provide face-to-face access to specialist palliative care seven days a week from nine to five, despite this being the National Institute for Health and Care Excellence standard since 2004, and only 2% of trusts provide a 24/7 face-to-face service. People should not have to die in pain and distress because trusts are not complying with a decade-old NICE standard.
A common theme in the Health Committee’s reports has been the need to ensure that choice is on offer. People want to have choice. Will the Government review the choice on offer for children and young people at the end of their lives, as they have done for adults? I have a further concern that without proper investment in community services and specialist palliative care services, choice will remain restricted. In the previous Parliament the number of district nurses fell by 2,400, and many other community nursing posts, particularly senior posts, were cut. With such a hollowing out and deskilling of the community sector, I am concerned that the nurses who provide end-of-life care services are coming under increasing pressure, without the time or specialist skills to provide the quality care and compassion needed at the end of life.
My hon. Friend the Member for Burnley (Julie Cooper) raised the serious issue of the level of cuts to adult social care. We know that we have already lost £4.6 billion from adult social care budgets since 2010. The King’s Fund, the Health Foundation and the Nuffield Trust have said that there will be a gap of around £3 billion in social care by the end of this Parliament. As we approach the Budget, it is important to acknowledge that the Government’s funding plans will not address that gap. The Local Government Association reported last week that councils are looking at council tax options that will raise only £370 million this year, which is less than the Government predicted. The promised better care funding is back-loaded, with nothing this year and only £100 million next year. In my local authority area, Salford, we will raise only £1.6 million this year, compared with cuts of £15 million since 2010.
GPs are also finding that they are under increasing pressure. In a recent survey, around 70% said that their workload is sometimes unmanageable, and over half said that the service they provide has deteriorated in the past year. One factor that is key to providing quality end-of-life care—we have heard about this in this debate—is ensuring that doctors and nurses have time to have the conversations needed with patients, families and other care providers, but the funding and staffing pressures I mentioned will not help staff to have time for those conversations.
The Health Committee’s report called for free adult social care at the end of life, and we made that a commitment in the Labour party manifesto, as my hon. Friend the Member for Luton North (Kelvin Hopkins) mentioned. In recommending that, there is clearly the issue of where we find the funding that we have talked about in this debate. It is clear that offering better support in the community would mean fewer hospital admissions. Too many people approaching death are forced to spend long periods of time in hospital owing to a lack of social care or alternative support options, and that is unsustainable.
The Chair of the Health Committee referred to the Nuffield Trust’s evaluation of the Marie Curie nursing service, which found that people cared for by a Marie Curie nurse had total care costs of around £500 less per person, and hospital stays and costs were often avoided. Only 8% of Marie Curie patients died in hospital, compared with 42% of people without a Marie Curie nurse. The End of Life Care Coalition thinks that those results can be replicated in other palliative care nursing services. Free adult social care at the end of life could also help to reduce the inequalities that currently exist in end of life care services due to age, gender, diagnosis, geography and deprivation, as has been mentioned.
We have heard that 88% of palliative care in-patients and 75% of new referrals were for people with a cancer diagnosis, even though cancer accounts for only around 29% of deaths. Older people receive less specialist palliative care than other age groups: only 16% is provided to people aged 85 or over, although 39% of deaths occur in that age group. We should be delivering services that enable someone living with dementia and someone living with cancer to receive the same quality of end-of-life care.
Will the Minister tell the House whether the Government will implement free social care for people nearing the end of life? The Opposition believe that altering the funding criteria for NHS continuing healthcare is not enough. He said in response to an earlier debate on end- of-life care:
“We have enough paper evidence. We know what looks good, how to make it happen and that it needs to happen, and we know that many people die in circumstances that leave much to be desired.”—[Official Report, 4 November 2015; Vol. 601, c. 1089.]
We need action. We need a response to the “Choice” review, describing what action the Government will take on the key issues of choice, funding for end-of-life care and social care services, co-ordination and the identification and support of carers. If end-of-life care is the litmus test for health and social care services, we are currently failing it for too many people. We need good quality, compassionate end-of-life care to be available so that each person nearing the end of life can feel supported and safe in the knowledge that they will receive the very best care.
The Parliamentary Under-Secretary of State for Health (Ben Gummer)
What a fantastic debate this has been on a most important subject, with many Members bringing their personal experiences to the attention of the House, and with such agreement on both sides about what constitutes good end-of-life care and what we need to do to improve the situation.
As Members on both sides have acknowledged, the situation is already very good. As my hon. Friend the Member for Totnes (Dr Wollaston) pointed out, The Economist recently rated end-of-life care in this country the finest in the world. The hon. Member for Burnley (Julie Cooper) said that that fact made her proud to be British, and I am sure many others share that sentiment. My hon. Friends the Members for Henley (John Howell) and for Poole (Mr Syms) said that our end-of-life care was a sign of Britain at its best, not just because we are doing well compared with other countries, but because that care exemplifies many of the qualities we cherish in our communities—community work, giving and generosity, especially in our hospice movement, which is unique to this country, and of which we are proud. There is, therefore, much to be proud about.
Our end-of-life care comes from a deep tradition, which, in its current incarnation, goes back to Dame Cicely Saunders, as the hon. Member for Central Ayrshire (Dr Whitford) pointed out, but far further back too, into our medieval history. It is about care for the dying and an understanding, as many Members have pointed out, that the special time at the end of life should be cherished and that we should respect care at that time as much as we would other parts of people’s care.
However, as hon. Members also pointed out, there is much too much variation. The hon. Member for Burnley said that that in itself is something of which we should be ashamed, and I agree with her about that too. There is exceptional care in this country for people approaching the end of life, but there is also, I am afraid, care that is not good enough. Constituents have put that to hon. Members across the House, and we need to change that in this Parliament.
We need to eradicate the variation I mentioned; to quote Bevan, we need to universalise the best—that is one of the foundation stones of our NHS. Indeed, that was a promise made during the assisted dying debate. As the hon. Members for Heywood and Middleton (Liz McInnes) and for Central Ayrshire pointed out, exceptional palliative care is the foundation of all care in the NHS, and it should be the expectation of everyone reaching the end of their life. That is where I would like to start in replying to hon. Members’ remarks.
The quality of care we provide for people in hospitals and at home is a mark of how we think about the national health service and the care services we provide. We should not think of them purely as curative services; they work as curative services only if that cure is on a foundation of care, and that is why getting this issue right is so important.
My hon. Friend the Member for Faversham and Mid Kent (Helen Whately) said this issue should be a priority, not just because of its importance in and of itself, but because it points to many of the efficiencies we can make in the health service and the care sector, which will free up money for care elsewhere in the sector.
The hon. Member for Luton North (Kelvin Hopkins) said end-of-life care embodied compassion in the service, and that is why we should place especial importance on it. My hon. Friend the Member for Poole said that respect at the end of life was something all clinicians and all others involved in care should show. Again, if we are able to achieve that for people for whom there is no cure, we can also do something remarkable for those elsewhere in the service, for whom there is, happily, the prospect of a cure.
My hon. Friend the Member for Vale of Clwyd (Dr Davies) said we needed to make particular changes in different settings, whether that was improving privacy in hospitals, improving discharge to home or improving the ability to look after people in their permanent residence, be that at home or in a care home. We need to take a range of different approaches in order to eradicate the variation that so many hon. Members have talked about. People can be expected to achieve choice only if a consistent quality of care is offered in all settings.
Hon. Members have pointed out the need to address funding, and NHS England is looking at the different currencies of care. We need also to look at the measurement of how care is provided. I have taken note of the points made by my hon. Friends the Members for Totnes and for Faversham and Mid Kent about the need to produce consistent measurements for quality of care at a local level. I hope to be able to deal with that in the not too distant future.
We need to look at the accountability of clinicians. I point Members in the direction of the “gold line” offered by Airedale NHS Foundation Trust. I take very seriously the remarks of my right hon. Friend the Member for Wokingham (John Redwood), who talked about named doctors, and refer him to the Secretary of State’s comments of 29 October where he expressly said that there should be a named consultant for patients in hospital. I hope that we will be able to extend that principle further afield, as we already have done in the course of the previous Parliament.
This matter should be addressed in a holistic manner. The hon. Member for Alyn and Deeside (Mark Tami) mentioned the need for the care of young people to be accommodated within these plans, and I intend to take that forward. We also need to consider those who are very young.
The hon. Member for Strangford (Jim Shannon) and my hon. Friends the Members for Lewes (Maria Caulfield) and for Erewash (Maggie Throup) referred to people who do not have cancer, especially those suffering from Parkinson’s disease and Alzheimer’s disease, falling out of the safety net in some areas. All those points were well made and will be taken into account.
I want to reflect on the comments of many Members about the importance of having a conversation. Professionals need to be brave, as my hon. Friend the Member for Erewash said. My hon. Friend the Member for Vale of Clwyd mentioned the need for confidence from professionals and for education.
John Redwood
Will my hon. Friend take up my point about relatives handling the death and the lack of a medical certificate or a death certificate?
Ben Gummer
I will. I take my right hon. Friend’s comments on that very seriously. We are looking at the whole system of death certification, and I hope to be able to come to the House in that regard in the not too distant future. His points were very well made.
My hon. Friend the Member for Salisbury (John Glen) talked about the duty that we all have to ensure that there is a better conversation between patients and clinicians; we should all be able to have that conversation so that we can break what my hon. Friend the Member for Faversham and Mid Kent described as a taboo. At this point, not just as a Government or as Ministers but as a society, we need to grasp the nettle. We will all need to be involved so that we can give people the confidence to talk about such matters.
Barbara Keeley
It sounds as though the Minister is about to conclude his remarks, but he has not yet said when the Government will respond to the “Choice” review, which I asked about, as did several other Members. That is very important.
Ben Gummer
As I have made clear publicly, we will respond in short order to the “Choice” review, but I want to get this right. It is important that we make the content of the response as good as possible, and I do not want to compromise on that. Moreover, the hon. Lady’s party did not bring forward such a review.
This has been a very good debate on all sides. I am delighted by the cross-party support for the need to make changes. I hope that we will return to this debate in the weeks and months ahead and will be able to continue making a real change in the way that we approach death and end-of-life care in this country.
Dr Wollaston
I thank all Members who have contributed to this debate and for making so many important points about how we can roll out the very best care and make it available to all of our constituents. I am disappointed that the Minister has not told us when he will respond to the “Choice” review, because it has been a year since its publication. As we have heard, a number of reports have set out what needs to be done. This is now the time for action and for the Minister to set out when it will take place.
Question deferred (Standing Order No. 54).
Pete Wishart (Perth and North Perthshire) (SNP)
On a point of order, Mr Deputy Speaker. We have just concluded two days of debate on the Government’s estimates, but the estimated expenditure itself has not been debated. At 7 o’clock, we will be asked to authorise the Government’s spending plans for Departments of State—some £600 billion of public money—without there having been any debate whatsoever about them. How can that possibly be right, and what should Scottish Members of Parliament do now that we are effectively banned from voting on English-only legislation that may have a Barnett consequential? We were told that that would be considered in the estimates process, but we are not getting the chance—
Mr Deputy Speaker (Mr Lindsay Hoyle)
Order. Mr Wishart, you have made your point very well time and again, and I understand why you are frustrated. As you know, it has been agreed by the House and that is what the Standing Orders say. We all know that it is not the Chair who is responsible.