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27 Jan 2009 : Column 51WH—continued
12.40 pm
Mrs. Caroline Spelman (Meriden) (Con): In the same vein, I praise my right hon. Friend Member for Birkenhead (Mr. Field) for the way he has championed this cause and for articulating both the needs of people at the latter stages of their lives and the needs of their relatives. I thank him for calling for this debate, thereby making it possible for me to contribute to it.
I, too, care passionately about this subject, not least because both my parents were unable to die at home, although they wished to do so, and because, in my constituency, there is a centre for the study of ageing and spirituality, which is led by the Reverend James Woodward, who spoke to us only last night in another place about what more could be done to improve the quality of the end of people’s lives. I share my right hon. Friend’s view that, if only we did more to improve the quality of life at end of life and to make people’s ending better for them, they would be less afraid and less likely to resort to ending their lives prematurely.
As my right hon. Friend said, there is a stark contrast between the 75 per cent. of people who say that they would like to die at home and the 25 per cent. of people who manage to do so. We as legislators have something to address here in respect of an aspiration that is completely unmet. However, this issue is even more important than that. As a Member of Parliament—I am sure that you experience the same thing, Mr. Gale—I have noticed the number of times that relatives have come to my surgery burdened with a sense of guilt and grief about not being able to provide the best end for a loved one, because all their efforts to bring a loved one home or to make them more comfortable in dignified surroundings were thwarted. That is what has motivated me so strongly.
We hear also from professionals working in this area how difficult it is for them to help to meet the wishes of the person who is dying and the wishes of their relatives. One professional nurse relayed how she had to make 10 or 12 phone calls a day over a prolonged period to ensure that her mother did not go into accident and
emergency but went instead into a nursing home with a visiting palliative care nurse. I am sure that plenty of people who read the report of this debate will be able to relate to the difficulty of trying to secure for people what they really want.
It is difficult for the terminally ill patient to find out what their choices really are. If they are not fully informed and given all the information available, almost by default they find themselves swept into the system and swept into a hospital bed, which, often, they are unable to get out of to go back to where they would like to die or into palliative care, which has the specialist provision that they need.
It is vital that palliative care teams are fully integrated into hospitals, so that at the point of decision, when a terminal prognosis has been gently and clearly given to the patient, they can be presented with the choice of dying elsewhere—in a hospice, for example—or being able to go home. It would be no good asking a patient if they wanted to go into a hospice when it had not been made clear to them that they had only weeks to live. As my right hon. Friend says, we are, as a society, for whatever reason, not good at talking about such matters to the people who really need to know. I ask the Minister, what could the Government do to facilitate that?
One reason why people do not wish to talk about death is that it raises huge existential questions, but we would help those facing their end if we shared their options with them and helped them to plan their last days. I, too, am grateful to Lady Finlay for helping me to understand better the needs of terminally ill patients through her own professional background. She was present at the talk given last night by Reverend James Woodward. At that talk, we heard from Lady Neuberger, who is also well-informed on the subject. She pointed out the stark contrast between this country, where our default setting is to put people in hospital beds and expect them to remain there until they die, and the Netherlands, which interestingly has gone further down the road to euthanasia, but in some respects has better end-of-life provision. We need to address the culture surrounding someone’s last needs and consider how to enable them to continue to accomplish tasks, until their dying day and hour, that confer on them a sense of human autonomy, which we do not relinquish until our last.
People are very afraid of the process of dying when faced with limited choices and forced to remain in a hospital bed where there is little that anyone can do for them. I tend to understand that. I encourage the Minister to address the question of what more we can do to enable people in their last days to lead a normal life. I am concerned, at this economic juncture, about the position of our hospices, which on average receive only 30 per cent. of their funding from statutory sources. Sue Ryder Care estimates that it is subsiding primary care trusts by about £6 million a year due to the shortfall in funding. In this recession, there is a genuine threat to hospices that depend so much on charitable funding.
Hospices and the Government have explored the possibility of a tariff negotiated with the NHS, so that a patient expressing a wish to die at home or in a hospice could bring with them the necessary funding from the acute setting. That would help many hospices to survive—hospices on which we depend, in partnership between
the third sector and the state, for the provision of palliative care. The Secretary of State announced last week an increase in patient rights. Will that extend to the rights of terminally ill patients? Does the Minister see that as a means to secure the funding, so that the money could follow the patient back to a hospice or into the home, where they could end their days?
As a result of the out-of-hours contract with general practitioners, some terminally ill patients are less sure of being seen out of hours by the GP attending to their needs into the last stages of their illness. In light of last week’s announcement, have the Government any thoughts about helping to ensure that a GP who, over time, has built a relationship of trust with a terminally ill patient may be with them at the end? Good 24-hour nursing provision, supplemented by organisations such as Marie Curie Cancer Care and Macmillan Cancer Relief, and the comfort of the familiar face of the family doctor would help to improve people’s experience of their last days.
As the Minister will know, the gold standards framework is aimed at improving the standards of end-of-life care. Although it has come into being as an example of best practice, there are concerns that those in palliative care feel that its provision is patchy. What plans do the Government have to ensure that the framework is not patchy, but more consistent, and something on which everyone in the country can rely to ensure that our experience of palliative care at the end of our lives is to that standard?
To conclude, the distribution of specialist palliative care across the country needs to be fair and even. There are pockets of good provision and pockets of weaker provision. I shall endeavour to address more of that issue when I introduce my private Member’s Bill. However, I am grateful to my right hon. Friend for initiating the debate, and I feel that we have a chance today to ask the Government some of the key questions on which so many people—perhaps even us, one day—will depend.
12.50 pm
The Minister of State, Department of Health (Phil Hope): I congratulate my right hon. Friend the Member for Birkenhead (Mr. Field) on securing the debate, and thank him and the hon. Member for Meriden (Mrs. Spelman) for their remarks. Both spoke of their personal experiences. As Members of Parliament we are not only the representatives of our constituents; we also bring our personal experience to such debates. I believe that this is the first time we have had a debate on the end-of-life care strategy. In a way, we have even more reason to thank my right hon. Friend for enabling the debate to take place: because end-of-life care affects us in the way that has been explained, it is not debated very widely in the community, as he said. The all-party group on dying well, which he has mentioned, is part of the process of encouraging that wider debate.
Some people end their lives with dignity and respect, with family and friends around them and in comfortable safe surroundings that they have chosen to be in. However, I think that my right hon. Friend and the hon. Lady are right to suggest that many people do not, and that provision of such experiences is at best patchy. That is why we published the end-of-life care strategy last July. It sets a clear direction for the future of adult services in that respect and builds on previous work, not least the
NHS cancer plan of 2000, in which resources were allocated. However, there is clearly more to do, and we need wider public debate. In a way, we are starting that today.
As my right hon. Friend and the hon. Lady have said, we need to get not only the public, but health and social care professionals, to engage with death and dying and to understand the content of the strategy, as well as the philosophy and principles behind it, and the practical action involved. Critically, it is right to focus on choice and to suggest that people’s preferences and needs for care are not fully elicited from them at an appropriate time, and are not fully planned or revised as those individuals experience the end of their life.
We need to be a lot better at ensuring that such planning becomes the norm and not the exception. The aim of the strategy is to raise the profile of the concepts—the idea of choice in end-of-life care and what the quality in question would look and feel like. Possibly it should go further and look at changing societal attitudes towards death and dying. Most people do not want to think or talk about death or engage with it. That is part of the problem, and why there is a lack of choice and a lack of the experiences that we would like for everyone.
An initiative that we are taking to get the debate going and deal with the point raised by my right hon. Friend is the establishment of a new national coalition of organisations to raise the profile of end-of-life care. It will be led by the National Council for Palliative Care and will develop a national tool to measure public awareness and assess public attitudes to death and dying. The strategy deliberately avoids targets and recommendations, but it gives excellent case studies and clear advice about what works and what represents the best we can provide at the end of someone’s life. It builds on the strategic health authorities’ visions of what end-of-life care should be like, and I am pleased to say that it has been well received by the national health service and by the voluntary and third sectors, which play such an important role in the relevant sphere.
Mr. Field: I want to pick up on something that my hon. Friend the Member for Meriden (Mrs. Spelman) said earlier, which I hope the Minister will be able to deal with. If not, perhaps he will write to us. One aspect of having a strategy involves helping the nation to get its mind around this issue, but death sometimes trips us up quickly and unexpectedly. My hon. Friend’s proposal is really an extension of what the Secretary of State was saying last week. If the organisations that would help us to die at home knew that the bills were going to be paid at some stage, it would ease our transfer at that vital stage of our lives.
Phil Hope: I think my right hon. Friend is referring to last week’s announcement that we are to pilot personal health budgets, which we already have within social care, to see whether that principle can be applied to the health service. We will announce those pilots shortly, and they will be flexible enough to encompass a range of services. I cannot pre-announce something that is coming up shortly, so he should listen out for that announcement. There might be opportunities in those pilots to explore this area into the future.
I agree with my right hon. Friend and the hon. Lady about the importance of choice. Personal health budgets might work as one approach to choice, but the whole
system should respond to the need for choice. Care plans are a key feature of the strategy and a key part of good practice. Individuals produce, discuss and write care plans, which are then available as they enter their end-of-life period. The figures that the hon. Lady has given on what the public want and what is happening in practice are absolutely right. That is because we have not yet engaged many people in writing care plans. If that process were universal, those figures would change dramatically.
Having a care plan is a critical part of recording a person’s preferences, so that those who support and care for them during their end of life can refer to it. The plan can be revised, depending on the circumstances, and having one means that that person’s wishes are much more likely to be met. To do that, we need to co-ordinate care across a range of sectors, including health and social care and out-of-hours and emergency care services. We also need a local register and a helpline.
For a care plan to become reality, we need the architecture for co-ordination of those services to be in place. If both of those parts of the service are created and delivered consistently across the country—the hon. Lady made a good point about patchiness—many more people will get the choices that we want them to have.
We need services to be 24/7 if people want to die at home, and we need rapid response community nursing, which the strategy describes as being part of the answer. Also, multi-agency care must be seamless, with people working together around the needs and choices of the patient. That requires staff to have proper training, not least in communication skills, for end-of-life care.
On implementation, I want to make a couple of points about how these great strategies and this policy will become reality in every part of the country. As my right hon. Friend and other hon. Members will know, we are committed to spending an additional £286 million to promote end-of-life services, through the strategy, in the next two years. He will also know that most cash is sent to PCTs, which commission the services, so money is not ring-fenced in that way because that is the overall policy. However, we have told PCTs that we expect that extra investment to be properly detailed through the resources and applications planning form. That means that we can work with strategic health authorities to understand exactly how that extra money is being translated into investment in end-of-life care services at PCT level.
Many issues have been raised, and I have not been able to address them all. I certainly hope that the gold standards framework, which the hon. Lady mentioned, is something that we want delivered throughout the country. We are putting extra resources in place for that, with capital funding available as well. Some £12 million was in the NHS end-of-life care programme, rolling out key tools such as the gold standards framework and initiatives such as the Liverpool care pathway, with which she will be familiar. We are taking prompt action now to ensure that we deliver the kind of outcomes that we need.
Arbroath Abbey
1 pm
Mr. Mike Weir (Angus) (SNP): It is a pleasure to speak under your chairmanship, Mr. Gale.
It is appropriate that the debate is taking place in a building that is part of a world heritage site. There are now some 27 world heritage sites in the UK and dependent territories, ranging from historic buildings to fantastic landscapes. Sites in Scotland are as diverse as neolithic Orkney, the city of Edinburgh, Robert Owen’s village at New Lanark, the Antonine wall and St. Kilda. The last is the only one that I have not yet managed to visit. In fairness, I have also visited several sites in England and Wales.
Each site is chosen for outstanding universal value to the world’s cultural and natural heritage. The idea first began in 1959 with a campaign to save Abu Simbel in Egypt from flooding. A convention was passed in 1972, and there are now 851 sites worldwide. This debate concerns the campaign to have the historic abbey of Arbroath designated a world heritage site, but it also raises a more general point regarding the Government’s policy on world heritage sites, particularly on applications for further sites.
There has been an ongoing campaign in Arbroath for the abbey to become a world heritage site, not only because of its grandeur in its own right—it is a magnificent example of a mediaeval abbey—but because of its association with the world-famous declaration of Arbroath. The campaign is completely non-political and encompasses people of all parties on the political spectrum and of none; indeed, one of its leading figures is a Conservative councillor, Jim Millar. The campaign has been supporting the case for the abbey and raising money for several years, appreciating that it would be some years before the abbey could be granted world heritage status.
A problem arose in early December last year when the Culture Secretary launched a review of the future designation of sites in the UK. The review was undertaken partly because UNESCO is seeking changes to the system, but a report prepared for the Department for Culture, Media and Sport by PricewaterhouseCoopers states that UNESCO believes the world heritage site list to be unbalanced in terms of the location and nature of sites included. It has therefore asked that well-represented countries consider slowing or temporarily ceasing nominations and that nominations, to the extent that they continue, constitute under-represented sites, such as scientific, natural or cultural sites, rather than urban or ecclesiastical sites, which are considered over-represented.
The campaign’s feet were cut from under it somewhat when the Department for Culture, Media and Sport was reported to have changed its policy, refusing to propose any more UK sites for UNESCO approval, although the PricewaterhouseCoopers report stated that the Department had several options. The campaign sought my help, and I wrote to the Culture Secretary to seek clarification. To date, I have received no response.
I therefore took the opportunity to raise the matter at Culture, Media and Sport questions last week. The Minister answered my question, but I was slightly concerned by the phrasing of her response. She said that after consultation, the Government would decide whether to put forward another list, which gave the impression that
perhaps no more sites would be proposed. I can guess what she will tell me today: consultation is still ongoing, and we should await the outcome. That is not sufficient. There is great concern about the outcome of the consultation, given the various options before the Department. Furthermore, if we await the outcome of the consultation, we will in effect be challenging a decision that has already been taken, and it will be much more difficult to obtain any change.
We need to put the case for Arbroath abbey now, before we are faced with a fait accompli. It is of the utmost importance due to the nature of Arbroath abbey and the comments about UNESCO. On the face of it, it could be argued that Arbroath abbey is an ecclesiastical site, but it is much more than that. Its significance goes to the very heart of our culture and the democratic culture of the world.
UNESCO’s list of properties includes two categories that could have been written with Arbroath abbey in mind. Criteria III says that it must
“bear a unique or at least exceptional testimony to a cultural tradition”.
“be directly or tangibly associated with events or living traditions, with ideas, or with beliefs, with artistic and literary works of outstanding universal significance.”
I shall relate the history of Arbroath abbey and explain why I feel that it falls in those categories.
The abbey of Arbroath was founded by William the Lion, King of Scots, in 1178. It is dedicated to Thomas Becket, the turbulent priest who was killed at the instigation of Henry II in Canterbury cathedral, which is also a world heritage site. In its day, the abbey must have been a very impressive and powerful institution. Even its ruins—particularly the impressive “Round O”—are an impressive sight in the centre of our town. William the Lion is believed to be buried before the high altar.
Nowadays, however, the abbey’s best known association is with the first declaration of Scottish independence, or the declaration of Arbroath as it is often referred to. As many hon. Members will be aware, that magnificent document was written by the then abbot of Arbroath, Bernard de Linton, and signed by King Robert I—the Bruce, as he is often known—at Arbroath on 6 April 1320. It is a letter to the Pope in Avignon and sets out the case for the continuing independence of Scotland, which had been regained following the battle of Bannockburn in 1314. However, the declaration is much more than that—great though it is; it echoes down through the centuries as one of the great documents of not only Scottish history but world history.
In his book “For Freedom Alone” Professor Edward Cowan puts the point very well:
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