Contribution
I pay tribute to my hon. Friend the Member for Wimbledon (Mr Kohler) for securing this debate and I thank the Backbench Business Committee for granting it. As he stated, the debate has taken on an added salience since the hon. Member for Spen Valley (Kim Leadbeater) brought forward her Terminally Ill Adults (End of Life) Bill on assisted dying. I hope we can all agree that regardless of what happens to the passage of the Bill, there is an urgent need to address hospice and palliative care. I want to touch briefly on two points: on children’s hospice funding and support; and, more broadly, on inequalities in access to palliative care, which relate to the concerns many of us have about that Bill.
On children’s hospices, I am very proud to have Shooting Star children’s hospice in my constituency in Hampton, to which my hon. Friend the Member for Wimbledon referred. As he stated, as well as serving children and young people and their families in my constituency, it actually serves a very wide area of south-west London, west London and all of Surrey. It provides care and support to children with life-limiting conditions, respite care, family support and, importantly, a bereavement service. From talking to the mother of a teenager who died very unexpectedly from an asthma attack in my constituency, I know that her young teenage friends have been very well supported by Shooting Star as they have been grieving their friend who so unexpectedly and tragically lost her life. I want to take this opportunity to pay tribute to Shooting Star for its incredible work.
Like other hospices, Shooting Star relies on the goodwill and generosity of so many in our community and beyond, skydiving, running, donating clothes and toys to its shops. As my hon. Friend pointed out, it now faces a £200,000 bill as a result of the employers’ national insurance rise. While I welcome the Health Secretary’s announcement prior to Christmas to renew the children’s hospice grant, I reiterate its question which was echoed by my hon. Friend: is this a long-term commitment and not just for the next financial year, and will it be ringfenced? It has told me time and again that it cannot plan for the future if it is living hand to mouth, year to year in terms of recruiting staff and putting services in place.
Hospice funding is so variable. As we have heard, Together for Short Lives reports that NHS funding in 2022-23 for children varied by as much as £483 per child. Hospice UK made a freedom of information request which found, shockingly, that 40% of ICBs have absolutely no idea how much they are spending on children’s palliative care. We need to hold our ICBs much more accountable for children’s and adult palliative care. Together for Short Lives also highlights a £295 million spending gap in NHS spending on children’s palliative care, when compared against National Institute for Health and Care Excellence standards.
That brings me to my second substantive point, on the variability of palliative care with particular regard to how it compares to national standards. Marie Curie estimates that one in four people who could benefit from specialist palliative end of life care do not receive it. People are more likely to get good palliative care, frankly, if they are richer, more educated, white and younger. The inequalities across our society in access to palliative care are growing and demand is growing, too. I had a number of conversations with the hon. Member for Spen Valley. These inequalities are one of many reasons why I really struggled and could not support her Bill on Second Reading. They really, really concern me. Back in 2011—getting on for 14 years ago—NICE recommended that there should be a designated palliative care advice line out of hours implemented in every area of the country, but only one in three areas offers that service. That shows us just how poor we are at putting in place what we have already been told needs to be provided so that people can die a good death. If that happened in any other area of care, particularly in cancer, there would, rightly, be outrage that we were not implementing NICE recommendations.
The 2024 Marie Curie “Better End of Life” report said that large numbers of people were struggling to access services. There was late recognition of their needs and poor communication. It found that the impact on carers of poor end of life care was profound. The physical and emotional toll that it took on carers left one carer saying:
“The overall experience is that no one really cares.”
When we are at our most vulnerable at end of life and our loved ones are also struggling, we deserve so much better. We need far greater investment in palliative care and hospice care. I urge the Minister to take genuine action to address both the geographic disparities and the deep inequalities that exist in accessing palliative care. We have a moral imperative, particularly if the assisted dying Bill makes progress. We cannot be in a position where assisted death is available universally on the NHS to those identified in the Bill, but access to good palliative care is not. That is what grated with me most and why I could not walk through the Aye Lobby that day. I urge the Minister and the Bill Committee to ensure that duties are written into law so that there is genuine choice at the end of life. Whether the Bill passes or not, we need to see much greater action on good palliative care.