End-of-Life Care

Brandon Lewis Excerpts

Tuesday 28th June 2011 Westminster Hall

[Brandon Lewis (Great Yarmouth) (Con)]

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.