Children’s Palliative Care

Robin Walker Excerpts

Tuesday 3rd March 2015 Westminster Hall

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I am grateful to have secured this debate and glad to have the opportunity to serve under your chairmanship, Mrs Main. I first became interested in this area through the work of Acorns children’s hospice in my constituency, which provides a valuable service to children and families from all over Birmingham. I cannot praise its work too highly.

I begin by acknowledging that I believe the Government are genuine in trying to establish a clear funding path for children’s palliative care and hospice services. I understand that the major change envisaged by the Government is the new per-patient funding system. It would be helpful if the Minister said more about how it will work and how he plans to ensure that it is properly monitored and reviewed. I also want to raise the issue of short breaks and bereavement care, as these elements are not included in the per-patient funding strategy.

The children’s hospice movement supports the principle of per-patient funding for children’s palliative care as a means of providing more sustainable, transparent funding through an NHS currency, commissioned by clinical commissioning groups and designed to complement NHS England’s commissioning of specialised children’s palliative care services.

I understand that the third strand of Government thinking is that local authorities should continue to be responsible for commissioning necessary elements of social care and that together this should create an overarching system where all elements of the care—clinical and non-clinical aspects, short breaks and bereavement support—are all provided for.

My purpose in seeking this debate is to address a genuine fear that the impending general election and uncertainty over the new system could lead to a funding hiatus that could have a damaging effect on the children’s hospice movement. If I have understood it correctly, the per-patient system is designed to reimburse providers according to the activity they undertake, and to incentivise both commissioners and providers to deliver palliative care in a child’s home, community or hospice setting, if that is consistent with the wishes of the child and the family, and clinically appropriate.

The idea of the currency is set out in NHS England’s 2014 document, “Developing a new approach to palliative care funding: A revised draft for discussion”, in which it is argued that the currency should make it easy for clinical commissioning groups to understand the specific needs of children with life-limiting conditions. It should also be possible for clinical commissioning groups to have a better understanding of what constitutes palliative care and of the potential cost drivers for commissioning.

What steps have the Government planned to ensure that those elements of palliative care not covered by the new per-patient funding system will be properly funded by local authorities and clinical commissioning groups? This new system is the product of hard work and, as I have indicated, the sector is generally favourable towards it, but it is worried about a number of aspects. For example, how will the costs incurred by providers during the transition be met, including costs of setting up new systems to record activity and of ongoing data collection demands?

The Government-commissioned palliative care funding review by Hughes-Hallett, Craft and Davies in 2011, was clear that introducing and implementing the new system should be cost-neutral to the sector. What support does the Minister envisage for the voluntary sector providers to enable them to implement this new approach?

It would be useful if the Minister outlined any plans to provide models of practice that show how the currency will work, especially in situations for children and young people subject to continuing care packages and personal budgets, as introduced by the Children and Families Act 2014. It would also be useful to understand how the data quality will be monitored and how comparisons of models of care and outcomes will be assessed.

It is not clear to me how the new system will deal with the issue of transition from child to teenager to young adult.

[Mr Robin Walker (Worcester) (Con)]

I congratulate the hon. Gentleman on securing this important debate. Acorns children’s hospice serves my constituency as it serves his. It has a fantastic hospice in Worcester. It has done some important work on transition space and supporting the many people who, because of advances in medicine, are living longer. Does he agree that it is vital that the Government engage with it on this work, to make sure that transition is properly supported by the future funding system?

[Steve McCabe]

Yes, I agree. That is exactly the point. It is fantastic that so many children now survive for so much longer. That creates new demands and service needs that have to be considered. I should be grateful if the Minister said what work is being undertaken, both within Government and the NHS, to ensure that these transition issues are being considered in any new funding plans. I concur with the hon. Gentleman on that. The Care Quality Commission report, “From the pond into the sea: children’s transition to adult health services”—that is its title, I kid you not—also indicated that this focus is important.

We are moving towards the election, so it would help if the Minister clarified where we are with all these plans. As I have said, I acknowledge that the intention is to create a fair and sustainable framework, but we are now in March—the projected launch date for the introduction of the new non-mandatory currency is March—and as yet, unless I have missed something, we do not know the Government’s intention. What I would really like to know, and what I think the hospices would like to know, is what is going to happen with the hospice grant? Is the intention that it should continue during 2015-16 and beyond? I am sure that the Minister appreciates that not knowing is a real source of anxiety and a blow to any attempts at long-term planning.

Almost 96% of children’s hospice organisations are worried, according to the Together for Short Lives survey, that CCG funding will be less than their existing grant and harder to access. That grant covered about 13% of the care costs incurred by children’s hospices and existing clinical commissioning group funding represents about another 12%. Uncertainty over almost 25% of previously guaranteed funding is a difficult basis from which to operate.

I am sure the Minister knows that these bodies rely massively on public generosity and fund-raising efforts, but they also need some core guaranteed funding. If the grant ceases and is not matched by equal funding elsewhere, 89% of children’s hospice organisations could be forced to reduce their services. Areas at risk include short-break services for 60% of users.