End of Life Care

John Redwood Excerpts

Wednesday 2nd March 2016 Commons Chamber

[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.

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[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.

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[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.