Children’s Palliative Care

Stuart Andrew Excerpts

Tuesday 3rd March 2015 Westminster Hall

[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.

[Stuart Andrew (Pudsey) (Con)]

As someone who has spent 14 years working for the children’s hospice movement as a fundraiser, I am completely aware of the point that the hon. Gentleman is making. Short breaks are incredibly important, because they are not only a break for the child, but for the whole family. Often people arrive on a Friday looking utterly exhausted. Just being able to have some normal family time until Monday is a great relief for them. Is that not the importance of these short breaks?

[Steve McCabe]

I do not think we can in any way overestimate the importance of short breaks to families and to children. Both need space at times, and the hon. Gentleman is absolutely right. The survey suggests that more than 60% of users could lose that service. There is also a risk of a 35% reduction in family support work, which is connected with short breaks and enables many families to keep going in stressful situations. There is also a risk of a 23% reduction in the amount of end-of-life care support provided.

Short breaks provide respite for carers and families and should be funded by local authorities and the NHS under their respective legal short-break duties. Despite being key providers of short breaks, a third of children’s hospices are not recognised by local authorities as being short-break providers. Some 42% of children’s hospice organisations receive no funding from local authorities. Page 56 of the palliative care funding review report states that

“pre-bereavement support is an absolutely essential part of palliative care and should be fully funded by the state.”

The review goes on to state, however, that far from being universal, only 65% to 70% of local authorities have open access services. Without the children’s hospice movement, there will be a gaping hole in end-of-life care.

I am not here to criticise the Government’s intentions, but the combination of the election and a new system with many unanswered questions risks significant funding problems. As organisations try to tighten their belts and take on new responsibilities, there is a danger that they will fall back on what they know or believe they know. It will not help the children or families of children with life-limiting conditions if clinical commissioning groups fall back on a narrow, clinical model that focuses on the child’s health needs as defined by doctors. The currency should not be used as a top-up for the acute sector providers, who can access other tariffs to fund care for children with life-limiting conditions.

Palliative care for children with a life-limiting or life-threatening condition is an active and total approach to care, from the point of recognition or diagnosis through the child’s life to death. It embraces emotional, social and spiritual elements and focuses on enhancing quality of life. It also supports the family and includes managing distressing symptoms, providing short breaks and care right through to the point of death and bereavement. That more holistic understanding of palliative care is reflected in national policy documents such as NHS England’s “Actions for End of Life Care: 2014-16” and the 2014 Care Quality Commission handbook. I welcome the interest that the Government have shown in an often neglected area, but we now need some clear messages, actions and signals to ensure that valuable work is not wasted and that an easily avoidable funding crisis is not allowed to develop. Local authorities under significant financial pressures are highly unlikely to fund what they might see as additional services unless required to do so. NHS England’s draft currency for children’s palliative care should be accompanied by clear guidance to local authorities on funding short breaks and bereavement care.

I would like the Minister to give an assurance that the structure is clear and that the intention is to have a three-source funding arrangement, with NHS England commissioning specialised children’s palliative care and utilising the experience of the children’s hospice movement, with CCGs commissioning general children’s palliative care using the new per-patient funding system and working closely with children’s hospices and with local authorities required to commission social elements of palliative care, such as short breaks, bereavement care and support for siblings and other family members, and seeing it as their duty to work with children’s hospices. It is vital that all three funding sources complement one another. If not, there is a risk that local authorities will regard those services included within per-patient funding as the entirety of palliative care and avoid playing their part. NHS England’s specialised care could fall prey to a narrow medical model and never leave the acute hospitals.

The Government need to provide some specific distinctions between specialised and general palliative care, so that one side is not tempted to avoid its responsibilities by relying on the funding of the other. We also need to know that NHS and local authorities are clear about their duties under the Children and Families Act 2014. It places a duty on them to jointly commission care for children and young people with special educational needs and disabilities up to the age of 25. I urge the Minister to provide what answers he can today to a valuable sector, which eagerly awaits his response.