End of Life Care

Sarah Wollaston Excerpts

Wednesday 2nd March 2016 Commons Chamber

[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.

--- Later in debate ---

[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—