(8 years, 6 months ago)
Commons ChamberRead Hansard Text Read Debate Ministerial Extracts
Maria Caulfield (Lewes) (Con)
I am pleased to have secured this debate tonight on the important topic of access to palliative care for those who are dying. There are three key reasons why this debate is so timely and so important. First, it follows hot on the heels of the assisted dying debate that we had here on 11 September. No matter how Members voted, there was cross-party support for the movement for better access to palliative care in this country. Secondly, it is an important subject because from my experience as a cancer nurse working in one of the best cancer units not only in the country but in Europe, I have seen at first hand the difference that good palliative care can make, not just to patients and their families at the time of death, but in the last few weeks and months, making patients’ lives as fulfilling as possible.
Thirdly, the debate is important and timely because it fits in with the discussion of the Access to Palliative Care Bill in the other place. That Bill aims to ensure that wherever people are in the country and whatever disease they are suffering from, palliative care services are available to them. It would put palliative care services into the mainstream for the many, not the few.
Nick Thomas-Symonds (Torfaen) (Lab)
I congratulate the hon. Lady on securing this debate. Should we not see palliative care in its broadest sense, including medical care as well as social care? That co-ordinated approach could make end of life far more tolerable and would mean that people had to go into hospital to a far lesser extent.
Maria Caulfield
I agree, and I will highlight that point later in my speech.
For me, palliative care is about support and services that help to achieve a good death and underpin the care in someone’s final weeks and months of life. What happens now is that all too often the provision of palliative care is distributed on the basis not of need but of availability, and depends on the diagnosis, where the person is treated, and sometimes even their age, leading to a patchy and ineffective service. We heard during the Adjournment debate on Monday night about the impact of not having good bereavement services, which stays with relatives not just at the time someone dies but for years afterwards, and may never go away if they have had a bad experience.
This patchy service continues despite all the hard work in recent years reviewing palliative care provision across the country. As far back as 2008, an end-of-life care strategy was produced, and in 2011 the National Institute for Health and Care Excellence produced quality standards, yet palliative care services remain patchy. To highlight that further, let us look at a few more statistics.
Unfortunately, we know that 100% of us will die eventually, and that three quarters of those deaths will be expected. That means that three quarters of the population could benefit from palliative care, but currently only 48% of people who have palliative care needs receive palliative care support. Of the 500,000 deaths that occur in this country every year, 82.5% are among the over-65s, yet fewer than 15% of that group have access to palliative care. That tells us that those who need it most often have the hardest job accessing it. For older people, death is often seen as inevitable and not something that palliative care should be helping with.
More shockingly, between 50% and 70% of people who are dying say they would like to die at home, but only 30% actually do. Most people end up dying in hospital—just over 50%. Hospitals are amazing places, but they are acute settings helping to deal with urgent and emergency cases. While they do need to do more to provide better palliative care, we need to invest in our excellent hospice movement and facilities so that if people want to die in a hospice, they can. We also need to support our community outreach programmes so that if people want to die at home, they can have that choice too.
Jim Shannon (Strangford) (DUP)
The need for palliative care always comes at a time when people and their families are feeling vulnerable. The importance of charities and Churches at that time is something that we all know very well. The hon. Lady referred to hospice care groups and organisations. Does she agree that their role should be recognised more by Government and by the authorities so that they can take better advantage of hospice care and do better for those people through it?
Maria Caulfield
I thank the hon. Gentleman. I absolutely agree. That point is picked up in the Bill.
The most shocking statistic concerns the diseases that people are suffering from. The London School of Economics says that 92,000 people a year miss out on palliative care help. At the moment, 88% of our palliative care provision goes to people with cancer. As a cancer nurse, I am certainly not saying that that needs to be reduced, but the majority of deaths are due to other diseases. Only 29% of people die of cancer, with 28% of deaths due to heart disease, 15% due to respiratory illnesses, 10% due to stroke, not to mention Alzheimer’s disease, motor neurone disease and multiple sclerosis. Until we ensure that palliative care provision is mainstream, and not just for patients with cancer, the majority of people will be denied access to a good death.
The Bill introduced in the other place comes up with solutions to resolve this situation and place the responsibility firmly in the hands of local clinical commissioning groups to ensure that all patients, no matter where they want to die or what disease they have, will get access to palliative care services. That will take the pressure off existing acute facilities that are currently having to provide them. The Bill makes some key practical proposals. The first is about the ability to admit people directly to palliative care facilities. This happens really well in a lot of places, but it does not happen everywhere. That goes back to the point made by the hon. Member for Strangford (Jim Shannon) about investing in our hospices to ensure that it can happen more widely. The Bill talks about support for healthcare professionals in all settings, so that whether they are an intensive care unit nurse or someone who works with motor neurone disease, they have a signposted facility to access specialist palliative care that helps them to help patients manage their symptoms.
The Bill fits very firmly into the Government’s seven-days-a-week NHS in calling for the availability of seven-days-a-week palliative care services. As I know only too well, it is at 4.30 pm on a Friday that a patient will phone up in pain and say they cannot cope, when pharmacies are closed and it is possible to get a prescription but not a drug. Someone who is breathless and needs a chest drain often has to wait until the Monday morning, in the meantime being admitted to A&E or a medical assessment unit and then finding it very difficult to be discharged to go home. This is why we need a seven-days-a-week palliative care service.
The Bill calls for some really basic things that should exist now but do not, such as sufficient equipment for our community services. It is unbelievable that a ward nurse who wants to discharge someone with a morphine pump cannot do so because the pump belongs to the hospital. Unless the community has a spare pump, that patient will not go home. That is why only 30% of people are dying at home—they are stuck in hospital because communities do not have the necessary equipment to look after patients. There are shortages of mattresses and feeding pumps, which would make a crucial difference if they were available.
Sarah Champion (Rotherham) (Lab)
I congratulate the hon. Lady on calling this debate on such an important and often overlooked issue. I support what she is saying 100%, but does she agree that it is not just the NHS, the community and the charitable sector that need to join up? Joining up health and social care would enable the seamless transition she is talking about.
Maria Caulfield
Absolutely. I am touching on some of the Bill’s highlights, but we also need to incorporate social care, because that is often the kind of support that carers need in order to be able to look after relatives.
The Bill also highlights the fact that medication is not available at all times. I know only too well that if a patient’s pain needs to be better controlled, they can get a prescription but they cannot get the drugs on a Saturday or Sunday or during the night. Once again, they are admitted to A&E for help in managing their pain. That is not acceptable.
Practical solutions are available to enable people to choose where they want to die. I was disappointed by the response of Lord Prior of Brampton in the other place when he dismissed the Bill so easily by saying that we did not need to legislate for good palliative care. I strongly disagree. If we can legislate for a charter of budget responsibility, which I strongly supported because it is important for this country to run a surplus, and if we can legislate to freeze VAT and national insurance because that is also vital to this country, and to charge 5p for every carrier bag, why can we not legislate to provide good palliative care for every person who needs it?
I urge the Minister to consider the Access to Palliative Care Bill, which is currently going through the other place, as a way to improve access to palliative services and to support patients, families and NHS staff.
Mims Davies (Eastleigh) (Con)
On legislation, does my hon. Friend agree that it gives us as individuals and families the opportunity to start thinking about the unthinkable, to improve the process and to shape the palliative care we will want in the future?
Maria Caulfield
I completely agree with my hon. Friend. We need to make death a normal part of life, but until palliative care is available to everyone it will still be seen as something that happens in dark corners in hospitals, when it should be happening at home.
The NHS is supposed to be there from cradle to grave, but this country is not getting death right. People are going abroad to commit suicide because they cannot face a natural death. We are doing something fundamentally wrong. I therefore ask the Minister to consider legislating on access to palliative care. Years of reviews have not solved the problem. With 100% of us facing death, we need to ensure that end-of-life care is treated as a priority.
The Parliamentary Under-Secretary of State for Health (Ben Gummer)
I thank my hon. Friend the Member for Lewes (Maria Caulfield) for bringing this very important subject to the attention of the House and for doing so with her characteristic passion and verve. It has been a pleasure to answer her points in several previous debates. She has made her points with great clarity and it is with great pleasure that I will respond to every single one.
I will start where I finished on Monday night. This debate is timely, because it follows closely on that evening’s Adjournment debate, which was brought to the House by my hon. Friend the Member for Colchester (Will Quince) and to which other Members contributed with such great passion, interest and detailed knowledge. I firmly believe that, unless the NHS understands that the basis of care is not the end point of healthcare but a good in and of itself, we will not build a satisfactory foundation for the medical care that we hope is the experience of the majority in the NHS. For people for whom the end point is not recovery, but good and decent care, we must ensure that such care is embedded in the foundations of the NHS. If we do not, we will not provide a suitable foundation for good care throughout the system. That is why I see palliative care not as something that is nice to have—an added extra or a bonus within the NHS—but as something that is crucial to the delivery of good care throughout the system, whether or not people are likely to survive at the end of their care in hospital, in the community or at home.
I share my hon. Friend’s judgment of the debate on the Assisted Dying Bill, which I found fascinating. No matter where Members came from in that debate, what was clear was their wish to cherish, support and improve the palliative care services in our country and to ensure that people had access to the very best services not only in the UK, but in the world. That is where I will start my general remarks.
My hon. Friend is right to point out that the provision of palliative care is variable across the country, and I will turn to that in a second, but it is one of the areas that we should be very proud of, not least because of the dedicated work that people like her provide across the system in specialist settings and because of the unique gift that we have in this country of the hospice movement.
That is why the Economist Intelligence Unit, only a few weeks ago, judged that this country had the finest palliative care in the world in terms of access to services and the quality of those services. I do not say that in order to say that there is nothing to do—quite the opposite. The Economist Intelligence Unit pointed out that there are examples of extraordinarily good care across the country. I want to ensure that the experience is not variable, and that no matter where one is in the country, one receives the finest care.
Where should one look? I will point to a few examples of where exceptional care is being provided. In Bedfordshire, Sue Ryder has brought together palliative care services across the county. There is a brilliant linking up of services, whether they be in the community, in hospital or at home. As my hon. Friend knows well, home can encompass care home settings and private homes. That is a beacon of good practice that has been brought together by an expert charitable institution.
The Airedale, Wharfedale and Craven clinical commissioning group has blazed a trail with its expertise in palliative care, particularly through its adoption of the gold line telephone number, which is used not just by clinicians, but by families. People are lucky if they need palliative care and live in the Airedale clinical commissioning group area, because they are likely to receive the very finest palliative care available anywhere in the world.
I know that my hon. Friend has experience of hospital palliative care as a cancer nurse at the Royal Marsden, where exceptional care is provided that is comparable to the best care anywhere in the world. She will also be familiar with the work that is done at Frimley Park, where there is a comprehensive palliative care programme that goes across the hospital and is not seen as a bolt-on extra. The John Radcliffe hospital in Oxford has a similar approach with similar ends.
Sarah Champion
The Minister is citing excellent examples, but does he agree with me—I think that this is the intention behind the debate—that we should not just have exceptional examples, but 24/7 care wherever people are and whatever their condition is?
Ben Gummer
I agree completely with the hon. Lady. I was just about to turn to the very useful intervention that she made earlier, in which she said that palliative care is a mark of the integration of the health and social care sectors. It is no coincidence that one often sees good palliative care where there is good integration of health and social care. In a sense, the state of palliative care is a proxy for where care is well integrated and where it is not. That is why it should be seen as part of the larger challenge of achieving successful integration, on which there is a good deal of cross-party agreement.
My hon. Friend the Member for Lewes mentioned the fact that many people do not die where they would choose. She will be aware of the Choices survey, which was launched by my predecessor in the coalition Government, the right hon. Member for North Norfolk (Norman Lamb). It has reported, and the Government have committed to replying to it. She can take that as an indication that there is policy to come, and that we will study carefully the things we have set up. We intend to ensure that people have greater access to the services they require to ensure that they can die where they wish. We made that commitment in our manifesto—we were very clear about it—and we intend to deliver on it, as we intend to deliver on the rest of our manifesto.
My hon. Friend was entirely right to point out that that will require changes in services where they are not good. That will require commitments on palliative care nurses and the spreading of training. They have been achieved in Airedale, but have not been achieved in other clinical commissioning groups, where care is sometimes significantly lacking. There is much to do in some areas of the country. If I may use Bevan’s words, it is about universalising the best. We know what the best looks like. We now need to ensure that we spread it across the rest of the country.
My hon. Friend was right that palliative care has, unfortunately, in some cases been associated with cancer care. That is not how it should be seen. She will be aware in great detail of the European Partnership for Action Against Cancer system, which is being used to ensure that cancer patients can indicate their wishes for the end of life. It can also help clinicians to manage that end-of-life period. The EPAAC system was originated and developed specifically for cancer patients, but we intend to roll it out for patients no matter what the cause of their death.
My hon. Friend mentioned the need to provide services 24 hours a day, seven days a week. Without wanting to state the obvious, that is one reason why we want to get a seven-day NHS working. When people need the NHS—whether they need medical attention that will save their life or pain relief that will mean that the end of their life is bearable—it cannot be right if treatment is deferred to a Monday because we do not have services available on Saturday and Sunday. That is the crux of what the Government are trying to achieve across our NHS reforms: we want to achieve a truly seven-day NHS.
Briefly, on the Bill introduced by Baroness Finlay in another place, I cannot disagree with the general sentiments of the proposal. The degree of variability that we have is obviously wrong and we must put it right. It should be right, in a sense, to say, “Let us legislate in order to make it so.” I have reservations about the Bill—I have made them clear to Baroness Finlay—but I should like to outline them to explain why I believe it may not achieve what it wants to achieve, and why, on a wider point, it might be counterproductive.
If enacted, the Bill would be the first instance in the history of the NHS that means we would make specific clinical demands on clinical commissioning groups about a specific clinical area. To take an analogy, we have not had a cancer services Bill that demands things of CCGs on cancer services. The Bill would therefore set a precedent, which requires very careful consideration. My current judgment, and that of the Secretary of State, is that we do not want to determine that demand from the centre in the manner in which Baroness Finlay wishes.
There are other instruments for achieving what Baroness Finlay wishes to do, such as the mandates to CCGs and to Health Education England. There are ways to achieve by similar means the same ends that she wishes to achieve, which is putting certain obligations on CCGs to ensure that they commission care in a way that we expect. We need to be careful about how we do it. Airedale is so good because it has come to that point by itself and developed its approach organically. Other CCGs around the country have come to equally good solutions in a different way.
I would not want to impose a solution from the centre that squashes the local innovation of good leaders. I think we can all agree that the NHS in the past has not been good at allowing staff locally to celebrate leadership and innovation. There are lots of brilliant people in the NHS who have great ideas, but they do not feel empowered to bring them forward. We need to be careful, therefore, about imposing solutions from the centre, either from the Department, NHS England or this place, that do not recognise the ability of local people to come up with local solutions. I have told Baroness Finlay that I want to develop policies that do what she wants to do but not by the means she proposes. I hope to empower local people to get to where she wishes to go, and I hope to do so in a manner that celebrates success and exposes failure, so that we can put it right, and universalises the best as quickly as possible, without taking a top-down approach, which might have the contrary effect.
We are in a better position than other countries because of the remarkable work of charities and voluntary bodies over the last few years, and we have now accumulated a mountain of evidence from charitable groups and Government. My hon. Friend pointed to the 2011 NICE guidelines, but there were also the five priorities outlined last year in “Priorities of Care for the Dying Person”, and we now have the NHS Choices review, to which the Government will respond. 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. I point in particular to those who die in hospital. It is clear from the VOICES survey, which tracks the experience of families and individuals at the end of life, that people’s experience of dying at home and in community settings, especially in hospices, is generally much higher than in hospitals. Broadly—I generalise—half of people in hospital do not have an optimum experience of death.
We can change some things quite quickly, but we have got to this point because of the sustained effort over many years and the accumulation of evidence in a clinical area where Britain leads the world. I pay tribute to my hon. Friend and other colleagues with expertise in this area, to the many academics who have worked hard on this, and to the hard work of NHS England and its director of palliative care, Professor Bee Wee, who is a remarkable clinician. Over the next few years, as we fulfil our manifesto pledge, I hope that all parties can work together on this, calling on the experience of people from every part of the country—it was great to hear from the hon. Members for Torfaen (Nick Thomas-Symonds) and for Strangford (Jim Shannon), who shared their experience from other parts of the UK. If we can bring all this together, I think we can do something rather remarkable for people with no medical hope at the end of their life but to whom we should give the absolute guarantee that their care will be exceptional and will make what is never going to be a happy moment at least bearable and full of meaning for them, their families and their loved ones.
Question put and agreed to.