Children with Life-limiting Conditions

Julie Cooper Excerpts

Tuesday 29th January 2019 Westminster Hall

[Julie Cooper (Burnley) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Dorries. I am grateful to the hon. Member for Strangford (Jim Shannon) for securing a debate on this very important subject. I pay tribute to all the dedicated people in hospices, in the community and in hospitals who support families with a seriously ill child. I also thank organisations such as Together for Short Lives, CLIC Sargent and the Rainbow Trust, which do excellent work to provide support.

Hon. Members across the House have made powerful speeches on a very emotional subject. I am grateful to them all. I can think of few things in life worse than for a parent to hear that their child is so seriously ill that they cannot expect to live a full life, or to live with the knowledge that their child will never grow into adulthood, and will die before them. That must be absolutely devastating and is against the natural order of things. The pain is almost unimaginable. I pay tribute to my hon. Friend the Member for Swansea East (Carolyn Harris) for sharing her moving story and for the work she does to support other parents to get through very difficult times.

In the United Kingdom, 49,000 babies, children and young people, and their families, are coping with life-threatening and life-limiting conditions. In recent years, the Government have made various commitments to deliver support for appropriate end-of-life care that recognises the difference between the end-of-life care needs of children and those of adults. The needs of children and young people in that situation are invariably more complex and can be longer term. The children’s charity CLIC Sargent reports that four out of five children survive cancer for five years or more. In fact, many children with life-limiting conditions live into adulthood. It is clear that although they may not need end of life care, they and their families usually need access to expert support and palliative care in a children’s hospice, at home or in a community setting.

As children with life-threatening and life-limiting conditions increasingly live into adulthood, it is more important than ever that they are able to express their care preferences and that the continuity and co-ordination of their care is assured. In 2016, the Government committed to offering children and their parents the right to be involved in choosing and accessing the most appropriate care. NICE guidelines published in December 2016 stated that local commissioners and providers should prioritise advance care planning and agree in partnership, in a responsive and flexible fashion, the place and delivery of that care.

However, the reality is a postcode lottery. We heard many good examples of that. My hon. Friend the Member for West Ham (Lyn Brown) spoke movingly about the plight of Maryam and the fact that children in England still do not have access to what is effectively a life-saving and life-enabling drug. I hope the Minister listened very carefully to that. My hon. Friend the Member for North Tyneside (Mary Glindon) raised similar concerns about what children and their families suffer.

Shockingly, 46% of CCGs are failing to implement the Government’s end of life care commitments. I note that when Ministers are questioned on the provision of health and social care services for disabled children, their answer invariably includes the words, “The commissioning of health and social care services is the responsibility of clinical commissioning groups and local authorities respectively.” That is all very well, but agreed standards are not being implemented.

I know the Minister cares about this issue, but there is a worrying lack of accountability. Will she outline what steps the Government will take to bridge the accountability gap? Will she clarify who is responsible for commissioning palliative care and who is responsible for commissioning respite breaks for families? Respite breaks provide essential relief for the parents and siblings of children with severe life-threatening and life-limiting conditions; they are often the difference between coping and not coping. Does she agree there is a desperate need for a review of all commissioning of palliative care and support services, and that the Government need to develop an overarching strategy to bring an end to the postcode lottery that leaves so many families struggling to access vital services?

An important part of the support available is provided by children’s hospices. We have heard many examples of those; the hon. Member for Eastbourne (Stephen Lloyd), my hon. Friend the Member for Lewisham West and Penge (Ellie Reeves) and others talked about excellent hospice care. In the main, hospices are charitable organisations that rely for the majority of their funding on donations and fundraising in the local community. The current economic climate makes it more difficult for hospices to raise the requisite funding; at the same time, the proportion of funding provided by the NHS is falling. Again, there is no consistency or strategic oversight of the amounts that CCGs and local authorities contribute.

[Liz Twist (Blaydon) (Lab)]

My hon. Friend mentions the fundraising that is done by some excellent organisations and lots of individuals, some of whom we have heard about. Does she agree that the Government should undertake to fund increased pension contributions for staff working in hospitals, instead of giving with one hand and taking with the other?

[Julie Cooper]

I totally agree, and I will come to that point in a moment.

The average NHS contribution to children’s hospices is only 9%. Recent additional costs relating to the implementation of the NHS staff pay award and extra pension costs have pushed many hospices into a dire financial position, with closure a real possibility. Where hospices are forced to close, the NHS is left to fund the entire cost of health and social care for those children and young people.

In that context, the announcement by NHS England in December of £25 million of extra funding for children’s hospices was extremely welcome. However, children’s hospices do not know how to access that extra funding. Derian House Children’s Hospice in Chorley, which currently supports 12 families from my constituency, told me this week that there is no clarity about how that newly committed funding can be accessed. As many Members mentioned, since the publication of the NHS 10-year plan there has been confusion about what exactly has been promised.

The Minister will be aware that the 10-year plan promises that, over the next five years,

“NHS England will increase its contribution by match-funding clinical commissioning groups (CCGs) who commit to increase their investment in local children’s palliative and end of life care services including children’s hospices.”

Does she agree that that is confusing, and will she clarify the following points? Will the £25 million promised in December be only for children’s hospices or for a wider group of children’s palliative care services? Can she guarantee that, as a result of the long-term plan, the £11 million children’s hospice grant will be protected and increased to reflect the growing demand and complexity of care provided by those lifeline services? The total spend on children’s palliative care in hospices, hospitals and the community currently exceeds £25 million, so the promised funding could be viewed—I am sure this is unintentional—as a cap on NHS spending on children’s palliative care. In the light of that, can she reassure me that the NHS will indeed provide additional funding for children’s hospices?

I turn briefly to the financial pressures that parents of children with seriously ill children often experience. The 2018 “Counting the cost” survey of families who provide long-term care for a disabled child found that many experienced huge financial difficulties. A third of all families surveyed said they had additional costs of more than £300 each month. Some 46% of families had been threatened with court action for non-payment of bills. That is hardly surprising given that 87% of the families surveyed were unable to work because of their caring commitments.

CLIC Sargent has highlighted that children suffering with cancer often have to travel longer distances than adult patients for regular treatments, placing a significant additional financial burden on parents already coping with so much. Will the Minister commit to introducing a package of financial support that includes a children and young people’s cancer travel fund for parents who care for children with life-threatening diseases? Will she also spare a thought for bereaved parents and accelerate the introduction of the children’s funeral fund that so many Members have requested?

In conclusion, I ask that the Minister answers the specific points that I and other hon. Members have raised, and commits to implementing a comprehensive strategy that provides a consistent standard of joined-up, adequately funded children’s palliative care that has full parity with adult care.

[Ms Nadine Dorries (in the Chair)]

Minister, will you leave one minute at the end for Mr Shannon to wind up?

--- Later in debate ---

[Caroline Dinenage]

I know that we are planning to meet next month to discuss this issue in more detail, but my understanding from the announcement in the long-term plan is that there will be an increase in funding for children’s hospices. I would not support a move towards anything other than that, so we are certainly in agreement about the value that children’s hospices offer up and down our country.

In July 2016, “Our commitment to you for end of life care” set out what everyone should expect from care at the end of life, and the actions being taken to make high-quality personalised care a reality for all. NHS England is responsible for delivering that commitment in partnership with key stakeholders through its national end of life care programme board. The hon. Member for Strangford mentioned ensuring that sustainability and transformation partnerships and integrated care systems deliver care in a way that supports their local population. NHS England is already working with Public Health England and the Care Quality Commission to provide bespoke end of life care data and support packs to STP and ICS areas, to help plan for and improve end of life services.

NHS England is developing a new indicator for clinical commissioning groups to measure deaths in hospital after three or more emergency admissions in the final 90 days of life. That sounds like a technical piece of data to collect, but such vital information will help us to understand exactly what care is being delivered, and ensure that we spread best practice and identify areas for improvement.

The hon. Gentleman rightly highlighted the crucial role that leadership and accountability play in commissioning those vital services, and NHS England has and is seeking to improve support for commissioners when funding and delivering children’s end of life care. In April 2017 it made available a new specialist palliative care currency—one for adults and one for children—to support local areas in planning and delivering services, including hospice services. The currency can help local services better understand complexity of care and the investment needed to deliver it. It can be difficult for some commissioners to develop suitable models to meet children’s needs, given that in some geographical areas relatively small numbers are involved. That is why NHS England has established an expert group, which includes Together for Short Lives, to bring together knowledge and expertise in children’s end of life care, consider developing models that are suitable for that incredibly vulnerable group of patients, and set up pilot models of care that will be implemented later this year.

A number of hon. Members mentioned short break services, and access to respite and short breaks is fundamental for many families and carers. Local authorities have a legal duty to commission short breaks, and although the NHS’s role is not statutory but a matter for local commissioners, it may also provide clinical support. Having the reassurance of clinical oversight can often mean the difference between carers taking those much-needed breaks and feeling unable to do so, and it is important that such work is collaborative. A recent report from Together for Short Lives found that 84% of clinical commissioning groups said that they commission short breaks for children who need palliative care—an increase from 77% in 2018. We want to ensure that 100% of clinical commissioning groups make such a contribution so that carers have access to the breaks they need. NHS England provides bespoke data and commissioning support to STP and ICS areas to enable them to plan and deliver effective services, such as short breaks, for children and young people.

Access to and quality of palliative and end of life care goes beyond funding for hospices, and through the long-term plan we are accelerating the roll-out of personal health budgets to give people greater control and choice. We want 200,000 people to benefit from a personal health budget by 2023-24, and that will include things such as provision of bespoke wheelchairs and community-based packages for personal and domestic support. NHS England is expanding the offer of mental health services to people receiving social care support and those receiving specialist or end of life care.

[Julie Cooper]

Does the Minister agree that the 49,000 babies, children and young people who have been diagnosed with life-threatening or life-limiting conditions would all benefit from a personal finance plan?

[Caroline Dinenage]

That is right. The system has to be rolled out carefully because we must get it 100% right. It is a jointly funded and collaborative system, but at the end of 2018 it covered 32,000 people, and by 2023-24 it will cover 200,000 people. That shows enormous progress and commitment, and it will give those who want it more choice and control over what kind of care and support they need to meet their needs.

NHS England is developing a refreshed end of life care core skills education and training framework to standardise training, and the NHS now employs more staff than at any other time in its history. The data does not identify nursing specialities, such as palliative care, but the hon. Member for Eastbourne (Stephen Lloyd) may be interested to know that 648 full-time equivalent doctors are working in palliative medicine, which is 202 more than in May 2010—an increase of 45.2%. NHS England’s long-term plan sets out how it will work with patients, families, local authorities and voluntary sector partners to personalise and improve end of life care.

I will write to the hon. Member for Strangford about NHS pensions and hospices. I was going to mention “Agenda for Change”, but I do not have much time and I wish to leave him time to conclude the debate. I thank all hon. Members who have taken part in this debate. We know there is more to be done to meet our ambition to reduce variation at the end of life and ensure proper support for children with life-limiting conditions and their families.