Children’s Palliative Care

George Freeman Excerpts

Tuesday 3rd March 2015 Westminster Hall

[The Parliamentary Under-Secretary of State for Business, Innovation and Skills (George Freeman)]

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.