Skip to main content

Children’s Palliative Care

Volume 593: debated on Tuesday 3 March 2015

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.

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?

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.

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?

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.

It is a pleasure to serve under your chairmanship, Mrs Main. I congratulate the hon. Member for Birmingham, Selly Oak (Steve McCabe) on securing this debate and for his gracious recognition of the Government’s commitment to, and good faith in, trying to get this right. I begin by paying tribute to the efforts of the thousands of people who work so selflessly for children’s hospices across the country. Without their efforts supporting the most gravely ill children and young people, we would not have our world-class hospices and palliative care services. I thank my hon. Friends the Members for Worcester (Mr Walker) and for Pudsey (Stuart Andrew) for their comments in support.

We are fully aware that the reliance of children’s hospices on volunteers and charitable fundraising reflects their comparatively recent historical development. They do not receive as significant a proportion of their funding from local health and social care commissioners as their adult counterparts. That is a long-standing anomaly that many in the sector perceive as threatening the sustainability of children’s hospices. Since taking office, the Government have taken that extremely seriously. As has been mentioned, we made a commitment in the coalition agreement specifically to place hospice funding on a more equitable and sustainable footing through the development of a new per-patient funding system for all hospices and providers of palliative care for adults and children. That would provide a transparent basis for local commissioning of palliative care services.

I am proud to say that that process has been accompanied by unprecedented direct investment in children’s hospices. We pledged in the coalition agreement to continue the annual allocation of £10 million to children’s hospices, and I am delighted to say that that was increased by 7% in 2012 to take account of new providers. Now allocated by NHS England, the grant has been increased again to £11 million. In addition, there were ad hoc grants of £19 million in 2010-11, and more than £7 million in capital grants in 2013 directly to children’s palliative care. We should not lose sight, however, of the fact that the annual allocation is a central grant in lieu of consistent, locally based commissioning, and it is to that which we need to move, not least because local commissioners have a better understanding of local need and how palliative care services can be integrated with other care.

The 2011 independent palliative care funding review highlighted the absence of good data on the costs of palliative care and proposed the collection of data on an unprecedented scale through a series of pilots, one of which looked specifically at children’s palliative care. Since the pilots concluded in April 2014, the considerable data generated, which cover all aspects of contact between someone being supported with care and the professionals delivering that support, have been analysed with the aim of identifying a currency that captures patients’ clinical and resource needs.

Hon. Members will understand that a useful currency has to group health care into units or packages that are broadly similar in terms of what is provided and the resources required, and that provide a common language for discussing the commissioning and delivery of palliative care. Ultimately, the aim is to give local commissioners the basis for discussions with providers about what is needed and how it is to be resourced, and clear, reliable data on the complex care that is provided to severely ill children. Good progress has been made in developing the currency, although none of the many providers and professionals that have been involved have been under any illusions about the complexity of the task or the importance of getting it right.

A document setting out currency units has been published and engagement has taken place with clinicians, providers and commissioners to test it out. The currency units are being developed into a currency framework that can be used locally by health economies for further testing. NHS England intends to make that available for 2015-16, along with supporting guidance. Hon. Members will note that we have not rushed into imposing a new funding system on the palliative care sector. We have worked extremely closely with many different providers in taking the work forward.

I know that unease is felt in some quarters about the prospect of a sudden transition to a new funding model. However, as we have previously placed on record—I am happy to do so again today—our aim is for the commissioning of children’s and adult hospices to be fit for purpose. That can be guaranteed only by testing the implications of a new funding approach with palliative care services themselves and by exploring locally how that would support more effective local commissioning, including how it must dovetail with other local services. There must be a planned and gradual transition to a new system, with clinical commissioning groups supported and able to take a strategic view of how palliative care for children fits into other services for children with complex needs, such as special educational provision and social care.

I entirely agree with the concerns that have been expressed about the commissioning of different services for children with life-limiting conditions and their families being integrated as much as possible, although we believe that there must be flexibility as to how different commissioners work together to co-ordinate provision. Supporting that joint working, and exploring how to effect the correlation of specialised and local commissioning of palliative care with social care, will be an important part of the guidance and other support made available during transition. It would be up to NHS England to consider what direct financial support might be necessary for hospices and other providers. That decision cannot be made before the thorough testing of the currency has enabled us to understand the implications. Clearly, appropriate guidance and case studies of good practice will be an important part of that, as the hon. Gentleman said.

On future allocations, just as we do not wish to see an abrupt transition to a new funding system, we do not intend to end abruptly the existing financial support provided to children’s hospices. We are committed to ensuring that children’s hospices are properly supported in a fair and sustainable way, which means ensuring that, when the time is right, there is a planned transition from a central grant to local funding. NHS England has responsibility for determining the future of the allocation to children’s hospices, and I know that that allocation has been prioritised as a commitment for 2015-16. Although it has not happened yet, when the route towards the implementation of the new currency is clearly mapped, I expect consideration to be given to the effect of transition on providers and how that might be reflected in any allocations made centrally during that period. A decision on programme budgets more generally is expected before the end of March.

The hon. Gentleman asked about transition. Of course, ensuring the sustainability of funding is not the only issue facing the children’s palliative care sector, as we have heard. My hon. Friend the Member for Worcester mentioned that as increasing numbers of young people with life-limiting conditions are benefiting from advances in medical science, allowing their condition to be stabilised, there is a growing demand for the more effective management of the transition to adulthood. Palliative care is not only about end-of-life care; it can provide vital support for living one’s life, but the setting must be age-appropriate and geared towards supporting the move to independent living, further education and employment. Typically, adult hospices do not provide the right environment for that, and children’s hospices are often not resourced to provide a separate and markedly different type of care for young adults, although I know that some people are developing facilities that cater for independent young people.

We know from the Care Quality Commission’s report that there is a pressing need for action across the NHS as a whole to improve how we meet the challenges of transition. Our system-wide pledge, “Better Health Outcomes For Children And Young People”, which the major health organisations signed in 2013, includes the ambition to secure care that is co-ordinated around the individual young person with complex needs in order to deliver a positive transition to adult services. There is undoubtedly more to be done, and it must be taken forward as part of a co-ordinated approach to meeting the needs of young people with complex needs.

There is increasing emphasis on the integrated commissioning and delivery of public services by the NHS and local government. We have recently introduced a new statutory framework for the integrated support of young people up to age 25 with special educational needs or a disability, which brings together the local authority and CCG to drive the co-ordinated assessment of need and planning for the individual child. Arguably, the role of palliative care for young adults should be fully integrated into such a framework of holistic support. It goes without saying that that would go beyond a narrowly medical model of care.

We would all agree that developing a new currency and a new funding framework for children’s palliative care is only part of developing more integrated services for children and young people. I would highlight that from 2011 to 2015-16 we have separately invested £54 million in the children and young people’s improving access to psychological therapies programme, which intervenes to help children and young people who have been affected by family bereavement.

The hon. Member for Birmingham, Selly Oak mentioned short-break services, which remain a key priority for the Government. We are very much aware of the invaluable support that they provide to disabled children and their families, including those who need palliative care. That is why, between 2011-12 and 2014-15, £800 million has been made available to local authorities through grants for short breaks. We have also introduced a short-breaks duty that requires all local authorities to provide a range of short-break services for disabled children and young people, and to publish a short-breaks statement explaining what is available locally and how it can be accessed. I would be happy to consider how we might ensure that local authorities are fully aware of the role of children’s hospices in acting as potential providers of short breaks.

In the final few minutes of the debate, I want to try to deal with all the questions raised by the hon. Member for Birmingham, Selly Oak. If I fail, perhaps I can undertake to write to him to address them properly. He asked what is going to happen to the hospice grant and whether it will continue. NHS England has made it a priority for next year. It has not yet formally agreed its programme budgets, but, going by the undertakings I have received, I believe we can be confident that it will continue as it is.

The hon. Gentleman asked about support for voluntary providers. It is clear that that will emerge from the testing of the currency—there is no dispute about it being included. He asked about plans to provide models of practice: yes, guidance on implementation will cover that. He asked about how data quality will be maintained: the testing of currency will include built-in quality assurance.

The hon. Gentleman also asked about whether we would commit to maintaining the NHS England children’s hospices grant until a new system is in place. I can guarantee that we will ensure that children’s hospices continue to be supported in their work. There is no question of the grant stopping before alternative arrangements are in place. NHS England has made it a priority, but has not yet agreed its programme budgets.

Finally, the hon. Gentleman asked about the new funding system for palliative care. We have published the currency document and commenced testing locally. We do not want to rush into a system that is not fit for purpose; we want to work with local providers and commissioners in order to empower them to have effective commissioning discussions.

I hope that I have provided some reassurance to the hon. Gentleman that the Government are firmly committed to seeing the children’s hospice sector supported. Given the strength of cross-party feeling on the importance of these issues, as highlighted today by the contributions of my hon. Friends the Members for Pudsey and for Worcester, I would expect any future Government to continue that and, in particular, to continue the work that we have commenced in providing a stronger local basis for the commissioning of children’s palliative care. I will happily write to the hon. Member for Birmingham, Selly Oak to respond to any points that I have not been able to address properly in this short debate.