Hospice and Palliative Care

Jim Shannon Excerpts

Monday 13th January 2025 Commons Chamber

[Mr Kohler]

I agree with the hon. Lady, and I will be coming to those points.

Today is not about rehashing the arguments made that Friday, but to allow Members time to discuss and reflect on this separate, but inextricably linked subject. It is not the last word on hospice and palliative care, but an important step in forging a consensus that I hope will unite us, no matter where we ultimately stand on assisted dying.

I began by referencing the crisis in hospice funding. Before I proceed further, I echo what the hon. Member for Spen Valley said and thank the Health Secretary for the £100 million in capital and digital moneys he announced last month. It will make a profound difference to the sector’s current financial position. I have been asked by individual hospices and Hospice UK to convey their genuine gratitude. In a similar vein, the Government’s recently announced commitment to extend the children’s hospice grant by a further year is deeply appreciated and equally vital to maintaining levels of service in this heartrending, but profoundly important part of the hospice movement. However, these are only short-term fixes and fail to provide the long-term funding and certainty critical to securing the future of the hospice movement.

Currently, only one third of hospice funding is provided by the Government, with the rest coming from charitable sources. That leaves hospices vulnerable to increased cost pressures, as can be seen in a recent Hospice UK survey, which found that at least 20% of hospices had cut services in the past year or were planning to do so. Becca Trower, the clinical director of the wonderful St Raphael’s hospice, which provides excellent care to residents in my Wimbledon constituency, was unambiguous when she told me:

“We have a funding crisis and we need to protect our hospice.”

Last year, that meant that St Raphael’s was forced to strip £1 million from its £6.5 million budget by ending its hospice at home service that provided vital care, advice and support to patients and carers in their own homes. It was a virtual ward, in fact, but not one that fitted within the NHS definition of such, which would have attracted the separate integrated care board funding available for such initiatives. In just one month, the cuts to the service directly impacted 26 patients, many of whom spent their last days taking up valuable hospital beds, dying in the one place they did not want to die and putting further pressure on the NHS. When the Government are aiming to move medicine into the community, it makes no sense for hospices to be forced into a position that achieves the opposite.

That contradiction is mirrored in the current funding settlement, where the Government have given with one hand and taken with the other by increasing employers’ national insurance contributions. The refusal to exempt charities will exacerbate the challenges confronting hospices. The amazing Shooting Star children’s hospice, for example, provides wonderful support for families in my constituency. It estimates that the change will add another £200,000 to next year’s cost base.

Hospices need certainty. Doubts over funding undermine morale and sap energy, making the recruitment and retention of staff another huge issue for the sector. To address these problems, the Government need to introduce a consistent, reliable funding mechanism that reflects the rising costs of care. Hospices consequently need to be included within the NHS’s much-anticipated 10-year health plan. In parallel, staffing needs must be addressed in the next NHS long-term workforce plan.

It should not be forgotten that hospices provide a variety of services in addition to palliative care, including emotional, psychological and spiritual support, as well as physio and occupational therapy, practical support, complementary therapies, respite care and bereavement services. Much of that is beyond the clinical, and not something that the NHS can be expected, nor can afford, to provide. That is why no one I spoke to in the hospice movement thought that hospices should be subsumed within the NHS. They provide a complementary service that extends well beyond the clinical, and to which a charitable funding model is more effective and appropriate.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman on setting the scene so well. One of the concerns that I and others in the Chamber have is the impact on the workers in hospices. It is not just about the financial implications, which are all part of the overall issue, but burnout. Staff are working long hours. They are volunteers in many cases, and they do that because it is what they are committed to. Does he share my concern that burnout in hospice care will have an impact on the NHS in the long term?

[Mr Kohler]

I agree with the hon. Member. We need more palliative care specialists and we need more training, and there is a real danger of burnout.

It is not just hospices that provide palliative care. When talking to specialists within and beyond the hospice sector, I have been struck by their commitment to giving patients a good death and their frustration that so many do not receive one. A palliative care doctor recently told The Guardian:

“I sometimes see patients…who come into hospital in unspeakable agony and want their lives to end. It is not because their pain cannot be prevented, but because they are not getting the care they need.”

A local oncologist told me:

“Demand for services is simply outstripping supply. The majority of patients are not getting their end of life care wishes met. The specialist palliative care teams are very good but there are not enough of them and they do not have adequate resources.”

Huge regional inequalities exist in the provision and quality of services due to the vagaries of the current funding model. The Health and Care Act 2022 included for the first time a statutory duty for ICBs to provide palliative care. However, it did not include a minimum standard of core provision, leaving it to what each ICB considers appropriate.

Freedom of information requests submitted by Hospice UK in 2023 found that adult hospice funding consequently ranged from just 23p to £10.33 per head of population across different ICBs. For children’s hospices, the variations were even starker. Research from the amazing charity Together for Short Lives found that spending per child with a life-limiting condition varied from an average of £531 in Norfolk and Waveney to just £28 in South Yorkshire.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in the debate and to follow the hon. Member for Hartlepool (Mr Brash). I thank him for his personal story. Personal stories tell the story of the debate we have in front of us. During the last debate on assisted dying, the dire straits of our palliative care system were rightly put under the spotlight, so I am pleased to see this debate to address the system and the lack of funding.

I will refer to two charities in Northern Ireland that I have had contact with. One of them is Northern Ireland Hospice. It has highlighted that the Government fund approximately 30% of service costs, so the majority of its income relies on the good will and generosity of voluntary donations and other fundraising activities. That means 70% of the funding to provide its specialist palliative care for over 4,000 infants, children and adults with life-limiting conditions in Northern Ireland comes from the funding raised by volunteers. We owe a lot to Northern Ireland Hospice and its volunteers.

The people of Northern Ireland are incredibly generous when it comes to charitable giving, but when we take into account the cost of living crisis and the fact that it naturally reduces what people can give—it is a fact of life—we can see the concerns of the hospice sector. Indeed, when Northern Ireland Hospice believed that its funding would be cut by health trusts last year, it announced that it would have to cut the number of beds available in children’s hospices from seven beds all week round to six beds Monday to Friday and only three at the weekend, which represents a massive change in what it is able to do. That is not the news that we want to hear. It does not mean that fewer children need hospice facilities, but that costs have risen, the ability of fundraisers has decreased, and the Government have not enabled health trusts to make up the difference. Although I have underlined the situation in children’s hospices, the issue is replicated in adult care in every corner of the UK. The hon. Member for South Antrim (Robin Swann) is here. He is a former Health Minister of Northern Ireland, and whenever Northern Ireland Hospice needed help, he was able to allocate funding to get it over that hard patch. I thank him on the record for all that he did to make that happen.

Funding for palliative care is simply not sufficient. I referred to burnout when the hon. Member for Wimbledon (Mr Kohler) very kindly let me intervene earlier. Medical staff whose loyalty and passion for the job keeps them in post, doing overtime or working unpaid to provide cover, are exhausted and unable to carry on. Marie Curie says that one in four people will die without the right care and support. Far too many people are dying in avoidable pain, in poverty, and alone. By 2048, the need for end of life care will have risen by up to 25%, so the challenge for tomorrow is even greater than the challenge for today—over 730,000 people will need care every year. We know that that crisis is looming, and now is the time to make changes for our loved ones and our constituents. Like other Members, that is what I am asking the Minister to do.

--- Later in debate ---

[Stephen Kinnock]

The Government announced a commission on the future of adult social care. A separate commission was announced by my hon. Friend the Member for York Central (Rachael Maskell) on palliative care. We will certainly monitor the findings of that commission very closely.

We will set out details of the funding allocation and distribution mechanisms for both funding streams in the coming weeks.

[Jim Shannon]

In my contribution, I made the House aware that the Northern Ireland hospice has to cut its beds from seven to six for five days of the week, and at the weekend, there are only three. The Minister knows that I respect him greatly. It is all very well to have capital money available, but there has to be money to run the system and provide beds. Otherwise, we can buy beds, but might not be able to keep them and run a service. There must be something seriously wrong with what he is putting forward.

[Stephen Kinnock]

As I said in a previous answer, hospices face a range of pressures that financial contributions from the Government will help to ease. The funding will, of course, have a knock-on impact on hospices budgets in the round.

In spite of the record-breaking package that we have announced, we are certainly not complacent. There is more work to be done, and through the National Institute for Health and Care Research, the Department is investing £3 million in a policy research unit on palliative and end of life care. The unit launched in January 2024 and is building the evidence base that will inform our long-term strategy. A number of hon. Members requested a long-term strategy and plan, which is sorely missing after 14 years of Conservative neglect and incompetence. I agree that we need a long-term plan, and assure Members that conversations are taking place between my officials and NHS England. The research needs to be based on evidence and facts, which the unit will help us to get.