Children’s Palliative Care

Steve McCabe 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.

[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.