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End-of-Life Care

Volume 530: debated on Tuesday 28 June 2011

It is a pleasure, Mr Walker, to serve under your chairmanship. The aim of this debate on end-of-life care in Great Yarmouth and Waveney has two key elements: to highlight the great deal of work being undertaken locally by a wide range of people for end-of-life care through the primary care trust, the James Paget hospital and the East Coast hospice; and to outline where we need further Government support, because more support is needed for end-of-life care in our area.

For many years, patient choice has been the buzz phrase used by all Governments in relation to the provision of health services. However, patients and their families in Great Yarmouth and Waveney, and in parts of the east coast more generally, live in one of the few places in the country where full patient choice of end-of-life care is simply not available. This debate will highlight the work that is already being done to provide end-of-life care, and outline the need for a full range of options.

The World Health Organisation defines end-of-life care as:

“The active, total care of patients whose disease is not responsive to curative treatment”.

Palliative and end-of-life care needs to provide dignity, respect and privacy for both patients and their families. There is an opportunity for a range of providers—hospitals, community hospitals, care homes, hospices and hospices at home—to be part of that provision. The aim is to provide a holistic approach to end-of-life care, in order to limit distress for both the patient and their families through the right type of support.

Let me first turn to current provision. It is disappointing that, at the moment, Norfolk has no in-patient hospice provision outside of Norwich. Other counties in the eastern region have much better provision. For example, neighbouring Suffolk has two hospices, in Bury St Edmunds and Ipswich. With a population of approximately 230,000, the Great Yarmouth and Waveney PCT area is significant in not having a hospice. I will return to some worrying figures relating to that shortly. There is a lack of choice. Great Yarmouth and Waveney is one of only two areas in the country with no in-patient hospice. If the Government wish to provide the widest choice, which I believe they do, then different solutions for different patients are required. There is no full range of options for end-of-life care. At the moment in Great Yarmouth and Waveney, end-of-life care is only available in a hospital, community hospital or at home. A hospice would extend that choice, and provide a midway option between dying in hospital and at home.

One project currently underway is Palliative Care East, which is part of the James Paget hospital. Funding has been secured to establish this superb project, which will be a day care centre at the hospital. There will be a resource centre and an outreach service with out-patient care for terminally ill patients, providing practical help and support, along with advice and information. Many people support the project—I have taken up the challenge of a triathlon to raise money for it. The date is 7 August, if anybody would still like to donate some money, through JustGiving, for Palliative Care East. In the past few weeks, some ladies raised £65,000 by climbing to the top of Ben Nevis—a great example of fundraising by a local community, which is not affluent, in order to deliver something that it needs very much. The hospital is to be congratulated on pulling that organisation together, and the project is just about ready to be delivered.

It is, however, important to provide additional services. Currently, that facility has no plans for in-patient beds. That is where another organisation, East Coast Hospice, comes on to the radar. It is a local charity, which I and my hon. Friend the Member for Waveney (Peter Aldous) have supported all the way through, which wishes to build and operate a 10-bed, in-patient hospice, alongside a day care unit, to provide a safe haven for patients and their families. So far, it is half way to raising enough money to acquire a five-acre site in Gorleston, which is close to the hospital, through various fundraising activities, including four fundraising shops that are now open. There is a lot of work being done. The charity requires several million pounds to commence building work on the hospice.

One issue that has arisen, with Palliative Care East and East Coast Hospice working at the same time to raise funds for two much-needed facilities, is the confusion in the local community about what they are. One challenge facing end-of-life care is how various providers can work together and access funding. It is important to avoid duplication, so that voluntary services can run alongside the NHS provision and for neither to be seen as a threat to the other, or duplicating costs, particularly administration costs. One aim of the debate is to highlight how different organisations need to work together, and how they can work together to provide real choice in an open, transparent dialogue that is required to achieve that. There has been some confusion, even among people in the public sector, and among councillors. We have had to have meetings to bring people together to explain the difference between what Palliative Care East will provide as an out-patient facility, and what a hospice provides as a non-hospital based facility for people at the end of life.

Historically, there seems to have been an institutional block to the provision of a hospice, particularly because of the stance of the local hospital. That has nothing to do with the current administration; it appears to go back to 1982, when there were arguments from the hospital that there was no local need for a hospice. That has been, and currently is, at odds with strong indications of support from patients, residents and GPs. The Marie Curie Cancer Care “Delivering Choice” programme notes the need for a hospice. Perceived local hostility towards the establishment of a hospice has, at times, directly prevented the project from moving forward. The PCT has not always been able to provide the necessary and helpful letters of support to allow the hospice to gain access to funding.

One worrying issue is that in our PCT area, Great Yarmouth and Waveney, £2.62 per head is spent on end-of-life care. Out of 151 PCTS, Great Yarmouth and Waveney is ranked 142nd for patient spending—the lowest in the east of England, and nearly half the national average expenditure. Even now, we are somewhat unclear as to what the current spending on end-of-life care is for the PCT, as there are no published figures for 2008, or indeed 2010. Research shows that the Great Yarmouth and Waveney PCT has the lowest spend per capita, despite having the highest relative need. With an ageing population, that will continue to put pressure on our local area.

During a debate recently secured by my hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter), the Minister of State, Department of Health, my hon. Friend the Member for Sutton and Cheam (Paul Burstow) said:

“We want to ensure that these institutions grow and flourish as part of a more personalised approach to end-of-life care.”—[Official Report, 2 February 2011; Vol. 522, c. 1007.]

During the debate, three principles for hospices were set out: to get the funding right for hospices; that there should be a clearer understanding of the role of hospices in end-of-life care, and that that should be recognised in the commissioning process; and that end-of-life care is a priority for improvement across the NHS. What will the Minister do to help us to persuade PCTs, such as Great Yarmouth and Waveney, to look at hospice provision as a core part of end-of-life care strategy?

The principles of the Health and Social Care Bill will allow GPs a central role in commissioning services and providing choice for patients. I very much welcome that, as do GPs in our area, with their pathfinder. At the moment, however, that choice will not be able to be fully exercised because no real choice exists in our area for end-of-life care. GP commissioning can help the establishment of a hospice in this area because of the broad support of GPs, as outlined in the Marie Curie “Delivering Choice” programme.

In last year’s end-of-life care strategy, the Government announced a £40 million capital scheme for hospices. That fund is allocated directly to PCTs, with the Department of Health not being prescriptive about how it is spent. In addition, Help the Hospices also receives funding directly from the Government to help support its network. That funding is only available, however, to hospices with established facilities. That excludes charities, such as East Coast Hospice, that want to build a hospice. I have two questions for the Minister. Will the Minister consider allowing opening access to funding, so that charitable organisations can access funding where there is a need for hospice provision, and where no current provision is available? Secondly, what can the Minister do to allow organisations that want to establish a new hospice to access capital funding from the Government, which is clearly needed in Great Yarmouth and Waveney?

The phase 1 report of the Marie Curie “Delivering Choice” programme made various recommendations about hospice provision and in-patient care in the area, which we have so far failed to deal with properly. The report highlighted widespread support among GP respondents, who identified hospice provision and palliative care services as key themes for health care in our area. They were particularly critical of the difficulty in accessing the 12 beds available at Northgate hospital in Great Yarmouth, underlining the need for additional in-patient beds, which a hospice could provide. GPs recognise the need for access to a hospice with specialist provision of enhanced symptom control, respite care to support families and emotional support for patients and their families. Of 45 respondents to the questionnaire, 38 considered the development of a hospice for vulnerable patients a necessity.

Most GPs recognise that the James Paget hospital is not suitable for end-of-life care. In fact, the whole point of a hospice is that it is not in a hospital but that it is an alternative. The James Paget is also a busy acute hospital, which adds extra pressures to make end-of-life care more difficult. The community hospital has limited access to its provision and has a shortage of side rooms allowing for privacy and respect. Although the PCT’s commitment to new palliative care facilities exists, the trust has not yet been able to do anything about the need for a hospice.

We now have the palliative care funding review, which is chaired by Tom Hughes-Hallett, the chief executive of Marie Curie Cancer Care. When launching the review, the Secretary of State said:

“This will better enable patients to choose how and from whom they receive their end-of-life care”—

something I fully applaud. After the debate, I hope that we can ensure that such a choice becomes available to the residents of Great Yarmouth and Waveney, as it currently is not. We do not even have access to the £40 million of hospice funding via the local primary care trust, as I noted a few minutes ago, because we do not currently have a hospice. We have, however, the need to build one.

The interim report published by the review committee in December 2010 states that

“we need...A reduction of inequities in the system; be they geographical…or access to services for patients with different diagnoses.”

The committee also comments that affluent areas tend to be able to offer a more diverse range of services owing to increased charitable funding. Poorer areas offer poorer levels of choice, a point highlighted in an area with deprivation, such as Great Yarmouth and Waveney. The interim report emphasises that the majority of patients have a preferred place of care when they die: at home. The second choice is a hospice, with almost 25% preferring that option, although at the moment only 5.2% can achieve that aim. Most deaths in England—about 55%—occur in NHS hospitals. That is exacerbated in areas such as Great Yarmouth where a full range of end-of-life care options is not available.

Can we find a way in Great Yarmouth and Waveney for the PCT, the hospital and East Coast Hospice to work together? Primarily, can the Government allow us to develop a hospice in Great Yarmouth by ensuring fair access to infrastructure capital funding? Organisations such as East Coast Hospice are working hard to raise the necessary funds to buy the land and to run the service, but they need help with the infrastructure, with the capital investment to make the potential building a reality.

It is a pleasure to speak under your chairmanship, Mr Walker. I am grateful to my hon. Friend the Member for Great Yarmouth (Brandon Lewis) for securing this debate on a topic of such importance to our two constituencies, and to the northern part of the constituency of my hon. Friend the Member for Suffolk Coastal (Dr Coffey).

My hon. Friend the Member for Great Yarmouth has set the scene admirably. I shall make a few observations based on my own finding and experiences in the past year representing Waveney and over the past 40 years as a resident of the area. I will outline five distinctive health features in the area that place a burden on the NHS generally and on end-of-life care more specifically.

First, Lowestoft and Great Yarmouth include pockets of extreme deprivation which are not immediately apparent to those with only a passing knowledge of Suffolk and Norfolk. Secondly, a high percentage of the population is elderly; the East Anglian coast has long been a popular retirement area. I do not begrudge people moving into the area—in fact, I welcome them—but the Government must recognise that they are an added financial cost for those providing health services, and that must be reflected in the funds made available. Thirdly, the influx of holidaymakers in the summer months is an added pressure. I well remember visiting my father in James Paget hospital some 10 years ago and observing that many of those in his ward were not local to the area.

My fourth point, with regard to where people die in the Great Yarmouth and Waveney area, is the limited hospice provision. In England as a whole, 5.2% of people die in a hospice, but in our area only 0.1% do. In the west of the Waveney constituency, those in the Bungay area are well served by the excellent All Hallows hospital at Ditchingham, but there is a glaring lack of a similar facility in the Great Yarmouth and Lowestoft area. East Coast Hospice, of which my hon. Friend the Member for Great Yarmouth and I are both patrons, is determined to redress the balance, as he said. It has a lot of work to do, however, and it is vital for the Government to ensure an environment and climate giving it every assistance and encouragement as it sets about its task.

Finally, despite the lack of facilities in the area, we have a tremendous community spirit, with many voluntary groups and charities doing all that they can to provide services and to raise funds. As well as All Hallows and East Coast Hospice, we have Waveney Hospice Care, which is merging with the St Elizabeth hospice, and does great work providing day care. Palliative Care East has reached its target for providing day care and support for those using the James Paget hospital, and East Coast Truckers continues its sterling efforts to raise funds for East Anglian Children’s Hospices.

Moving on, I will outline three areas of end-of-life care in which we must do better. First, as I mentioned, more hospice care is needed—my hon. Friend set that out clearly. Secondly, linked to that, is the urgent requirement for more respite beds, so that carers can get away for a much-needed break. Last Friday, I was with Crossroads Care, which reinforced that point.

I congratulate my hon. Friend the Member for Great Yarmouth on securing the debate and my hon. Friend the Member for Waveney (Peter Aldous) on his contribution. Does he agree that, although we do not have the range of choice, we ought to pay tribute to places such as Patrick Stead hospital in Halesworth, which manages to provide some respite care but could easily provide more if the funding were available?

I agree entirely. The Patrick Stead is my local hospital, so I also endorse its excellent work.

The third area is the need for the provision of 24/7, around-the-clock community care, which must be a priority. It could provide people with the option to spend their last days in their own homes, with their families and friends, which so many people wish to do. My father, who died last year, died in hospital and not at home. For my mother, who cared for him in the last few months of his life, the availability of such a service would have made her job as a carer that much easier.

In conclusion, what am I looking for from the Government? I want two things: first, a fairer funding settlement, to address the needs that I have outlined briefly; and, secondly, a system or framework that enables the voluntary and charitable sector to work with and flourish alongside the NHS. The Department of Health tends to distinguish only between the NHS and private providers, but the third sector must not be forgotten and it must be set free to flourish without the bureaucracy that currently bears down on hospices and carers.

As ever, it is a pleasure to serve under your chairmanship, Mr Walker. I congratulate my hon. Friend the Member for Great Yarmouth (Brandon Lewis) on securing this debate. He is closely involved with charities in his constituency, and the issue is close to his heart, as it is to mine, having worked in the NHS for 25 years before entering this place. I congratulate him and all the local people who have worked tirelessly to raise funds in his area.

Many people receive excellent care at the end of life, but not everyone does. Services in some parts of the country are not as good as services in other parts, and people with some diagnoses are more likely to get good, high-quality, end-of-life care than others. My hon. Friend is right that choice is absolutely central. Choice is about where one is cared for and where one dies. The end-of-life care strategy, published under the previous Government in 2008, aimed to improve care for people approaching the end of life, whatever their diagnosis, wherever they were, including enabling more people to be cared for and die at home, if they wish. It is worth noting that the figures indicate that 17% of people, when asked where they would like to die, reply that it depends. That depends largely on the sort of support that they feel that they might get. My hon. Friend the Member for Waveney (Peter Aldous) mentioned respite care, which is an important element. People feel they might like to die at home if their family could get some respite from their responsibilities.

The end-of-life care strategy covers all adults with advanced progressive illness, and care given in all settings. We know people want choice about where they die. Some want to die at home, but not everybody. Some people are happy to die in a care home, where that has become somebody’s home, which we must not forget. However, we know that most people die in hospital; the figure is about 57%.

We want to ensure that the services are there to help people die and live the end of their lives in a comfortable setting. For choice to become a reality, we need commissioners and providers to ensure that the right services—including community-based services, such as 24/7 care, as mentioned by my hon. Friend the Member for Waveney—are available to support people at home. Ensuring that those services are available cannot be done overnight. We have said that we will review the progress we have made in developing and improving services in 2013; that will be an audit of where we have reached.

We also want to review the payment system to support end-of-life care, including exploring options for per patient funding. The funding has to be right to provide the incentives to commissioners to purchase the care that we want to see. We have set up an independent palliative care funding review to look at the matter, as mentioned by my hon. Friend the Member for Great Yarmouth. The review, covering both adult and children’s services, has been looking at options to ensure that the funding for palliative care providers is fair and encourages the development of community-based services. As I said, it is important to get the levers and incentives in the right place. We hope to be able to respond formally to the report by the end of the year.

Of course, hospices and the important role that they play are in the mix of care facilities that need to be provided. When I worked in this area of nursing there were very few hospices in the country. One cannot talk about end-of-life care without mentioning people such as Colin Murray Parkes who spearheaded the hospice movement. We want to see hospices flourish, develop and continue the expansion of their remit for caring for those with illness other than cancer, and into community-based support for patients, their families and their carers.

Only a comparatively small number of people die in a hospice, but a great many more benefit from their services and expertise in other ways, such as day therapy or hospice at home. My hon. Friend the Member for Great Yarmouth mentioned the £40 million capital grant for hospices, but that an area must have a hospice to get the grant. His point is well made. The one-off grant allowed us to fund 123 projects in 116 hospices, which is quite a far reach. For the longer term, the palliative care funding review will help us move towards a fairer funding system that puts the levers in the right place.

However, it remains for local NHS commissioners to determine what services should be provided locally. I urge all hon. Members to ensure that they work closely with the local NHS. I understand that the estimated need for palliative care is higher in Great Yarmouth and Waveney than in any other PCT. NHS Great Yarmouth and Waveney, together with Norfolk and Suffolk county councils, have commissioned the Marie Curie “Delivering Choice” programme, one of the first to be established in the east of England. That programme brings together local organisations, patients and carers. I can assure my hon. Friend the Member for Great Yarmouth that the Department of Health never forgets the third sector. The third sector is a very important part of the mix of health care providers. We never forget it because there are people around the country who work tirelessly in the third sector, not just to support people who are ill or at the end of their lives, but their families and carers.

My hon. Friend the Member for Great Yarmouth is right that hospice provision is part of the mix of care. Ideally, no care setting should have priority over any other. The settings are like the pieces of a jigsaw: the picture is not complete until all the pieces are in place. The choice is not there until all the choices are available locally. Many care homes have developed a lot of expertise in the area and are now delivering excellent end-of-life care. The knowledge and expertise owned by the professionals in end-of-life and palliative care are what matters.

I will return to the subject of the local area. NHS Great Yarmouth and Waveney have put together this programme, and a new end-of-life pathway has been defined and specifications written for the services required to deliver it. The new services that have been commissioned are specialist palliative in-patient services; a care resource and outreach service; and a nursing end-of-life care facilitator.

I fully understand the concerns that prompted my hon. Friend to secure the debate, and it wonderful that he has the support of other hon. Members. I am sure that working together with the local NHS, they will move the programme forward. I applaud his commitment to the campaign for the best-quality end-of-life care for his constituents. I believe that the initiatives and steps that the Government are taking will help improve this important area of health care. We look forward to continuing to work with everybody, including those in the hospice movement, to achieve that aim.

I would like to finish by mentioning the incredible efforts, not just of those in the east of England but around the country, who are tireless in their efforts to raise money, to support those at the end of their lives, and to support the families who are looking after them.

I welcome the Minister’s warm words for actions already undertaken by my hon. Friends the Members for Great Yarmouth (Brandon Lewis) and for Waveney (Peter Aldous). At some point, would she come to our part of the world, to meet people who are actively involved, and to hear about other aspects such as the community nursing care fund, which, as long as she helps us get a hospice, may provide a good role model for elsewhere in the country?

I would be delighted to visit the east of England. The hon. Lady has struck a good deal. I am always interested to see progress made. As she says, it is important to spread good practice. For anybody who is in need of NHS services or care, nothing but the best will do. We should never lower our standards in trying to achieve that aim. Nothing but the best will do on the day one is born; and nothing but the best will do on the day one dies.