Children with Life-limiting Conditions

Mark Tami Excerpts

Tuesday 29th January 2019 Westminster Hall

[Mark Tami (Alyn and Deeside) (Lab)]

Does the hon. Gentleman recognise, as highlighted by CLIC Sargent, the financial cost? It might be the last thing that people think about when everything else is going on, but there is a huge financial cost. The costs associated with cancer treatment are estimated to be around £600 a month extra, and the travel costs are on average £180 per family. For some people that is a huge amount of money.

[Jim Shannon]

I thank the right hon. Gentleman for his intervention and reiterate the point he has made. The financial implications, restrictions and pressures are important. I know CLIC Sargent well. It does massive fundraising in my constituency and elsewhere. I appreciate its work immensely.

Children’s palliative care providers offer a range of services, including supporting families to manage their children’s pain and distressing symptoms; providing children and their families with lifeline short breaks; and offering bereavement support both before and after the child has passed away. Families want to be able to choose where they receive the lifeline children’s palliative care services that they rely on when they need and want them. They also want to choose who cares for their child and which treatments they receive.

Along with others, I am a vice-chair of the all-party group for children who need palliative care. We seek to educate, inform and motivate parliamentarians to take action to help transform the lives of children and young people with life-limiting and life-threatening conditions across the United Kingdom of Great Britain and Northern Ireland. We are supported to do so by our secretariat, Together for Short Lives, the UK’s leading charity for the 49,000 children living with life-limiting conditions and their families. In November 2017, the all-party group began a Select Committee-style inquiry into the extent to which the Government are meeting their choice in end-of-life care commitment for babies, children and young people. The Government are clear that that commitment applies to people of all ages who need palliative care. The commitment explicitly states:

“To support high quality personalised care for children and young people, commissioners and providers of services must prioritise children’s palliative care in their strategic planning”.

Prioritising children’s palliative care in strategic planning is so important.

In a report last October, the all-party group published what we found and what action we recommend as a result of our inquiry. Despite the end-of-life care commitment, the APPG has heard evidence from young people, families, services and professionals that the quality of palliative care that children and families can access is patchy—the reason for today’s debate—and depends on what part of England they live in. MPs and peers have stated that that is unfair and represents a wholly unjustified health inequality.

The APPG highlighted five areas of particular concern where many children and their families have limited access. The first is children’s palliative care out of hours and at weekends. They also need short breaks and respite. As MPs we know these things, but the respite that is needed is so important to give parents a break. Age-appropriate palliative care and smooth transitions to adult services must be smoother, simpler and less stressful. Specialist children’s palliative care teams led by level 4 consultants are needed, and we need advance care planning. Those five barriers explain why the Government's choice commitment is at serious risk of not being met, which is why we are having this debate.

I am very pleased to see the Minister and the shadow Minister in their places. I know they both understand the issues. That certainly came out in my discussions with the Minister last week. Today we hope to hear the responses that we need to satisfy our concerns.

The first area of concern is leadership and accountability. Almost half—46%—of clinical commissioning groups are failing to implement the Government’s choice in end-of-life care commitment and have no plans to do so, which is disappointing, but there are reasons for it. Only a third of CCGs responded that they are implementing the guidance, and a further 19% stated that their plans to do so are in development. Consequently, will the Government and NHS England consider appropriate mechanisms to bridge the children’s palliative care accountability gap? Furthermore, will the Government develop a system to monitor how sustainability and transformation partnerships, integrated care systems, CCGs and local authorities are supporting children’s palliative care in accordance with their legal duties? That is very important. Will the Government develop outcome indicators that measure the extent to which children with life-limiting conditions and their families can make choices about the palliative care that they receive? If so, will they reflect the outcomes set out in the National Institute for Health and Care Excellence quality standard for end-of-life care for infants, children and young people?

The second area concerns clarity. Will the Minister work with her colleagues at the Department for Education and NHS England to write to STPs, ICSs, CCGs and local authorities to clarify which parts of the health and care system in England are responsible for commissioning palliative care for children and young people aged 0 to 25? We always go on about data, but data is important to get a strategy that works. It is vital to make it clear who is responsible for commissioning short breaks and specialised children’s palliative care, as described by NHS England.

The third area is funding. Unfortunately, there has been a downward spiral in the trajectory of funding: 22% in 2016-17 and 2015-16 compared with 23% in 2014-15 and 27% in 2013-14. That downward trend worries us greatly. There was a wide range in the state’s contributions to voluntary care sector children’s palliative care providers’ charitable costs in 2015-16. The maximum contribution received by a charity in 2015-16 was more than half and the lowest was 2%. Like other members of the APPG, I was therefore pleased to welcome NHS England’s recent decision to commit to funding children’s palliative care in the long-term plan. However, I want to highlight the mismatch in the two announcements that NHS England made.

On 27 December, NHS England announced that up to £18 million would be available to children’s hospices through the long-term plan, of which £7 million would depend upon CCGs contributing another £7 million through match funding, which is fair enough, taking the total to £25 million. Yet in paragraph 3.41 of the plan, published on 7 January, NHS England said that the £25 million would be for local children’s palliative and end-of-life care services, including children’s hospices. Does the Minister recognise that the two NHS England announcements were confusing, and can she clarify whether the £25 million will be for children’s hospices only, or a wider group of services? We need answers to those points. I gave the Minister advance notice of all my questions. It was almost the highest number of questions I have ever asked a Minister at one time, even though I ask a lot of questions.

Can the Minister guarantee that the £11 million children’s hospice grant will be protected and increased as a result of the long-term plan, to reflect the growing demand and the complexity of care provided by those lifeline services, and will she guarantee that total NHS funding for children’s palliative care will not fall as a result of the long-term plan? Will she also monitor the amount of money that NHS England, clinical commissioning groups and local authorities are contributing to children and adult hospice and palliative care charities? If so, will she ensure that they bring about parity in the state’s percentage contribution to their charitable costs?

I often refer to the Scottish Government—in the best of terms, as well. I note that they have committed to bringing about parity and funding 50% of the agreed charitable costs of children’s hospices across Scotland. They often set the bar, and set an example for the rest of us to try to achieve. I know that my hon. Friends from the Scottish National party will speak to that, and I look forward to their contributions.

The funding challenges are being exacerbated by the Government’s decision not to provide voluntary sector providers that do not apply “Agenda for Change” pay and conditions with financial support in order to mitigate the recent pay rise for non-clinical NHS staff. Will the Minister provide financial support to help voluntary sector children’s palliative care providers, including children’s hospices that do not apply “Agenda for Change” pay and conditions, to mitigate that recent pay rise?

We have to mention the Government’s proposal to increase the proportion that employers need to contribute to the NHS pension scheme from 14.9% to 20.9%. That will also lead to children’s hospices incurring significant costs. I say very gently that there is an imbalance in what is happening. Although the cost of the increases for NHS organisations will be met by the Government through additional funding, the potential additional costs for charitable hospices will not be.

Children’s hospices are faced with the puzzling situation where NHS England is giving them more money with one hand while, through the pension scheme changes, the Government are taking it away with the other. We all have concerns about that. Will the Minister meet the significant costs that children’s hospices will incur as a result of the Government’s proposal to increase the employers’ contribution to the NHS pension scheme?

The APPG believes that the Government and NHS England should go further to ensure that children’s palliative care provided by the statutory sector, in hospitals and in the community, is funded equitably and sustainably in England. The National Institute for Health and Care Excellence calculates that by investing £12.7 million in implementing its guideline on children’s palliative care, non-cash savings worth £34.7 million would be released back into the NHS. Mathematics is not one of my stronger points, but it seems logical to do that. Will the Minister undertake a review of the palliative care available to children with life-limiting conditions in England as a matter of urgency, and will she develop a funded, cross-departmental children’s palliative care strategy for achieving better outcomes for children and families across the statutory and voluntary sectors?

There are too few professionals with the skills, knowledge and experience to provide children’s palliative care in hospitals, children’s hospices and the community. Those who are skilled, and have the ability and opportunity, do wonderful work. Will the Minister set out the steps that she is taking to develop and advance care plans with families? Shortages in children’s nurses, and generally in children’s palliative care, are particularly acute.

The final area is integration. Single, joined-up education, health and care assessments, plans and personal budgets for children and young people up to the age of 25 are available only to those who have a special educational need. The APPG is also unclear on how the Government’s approach to personalising palliative care for children and young people, which is underpinned by joint plans and budgets, correlates with the special educational needs and disabilities system. That is tremendously important to us all. I should be grateful if the Minister would tell us whether she plans to ensure that all 40,000 babies, children and young people in England with life-limiting or life-threatening conditions have the right to an integrated assessment, plan and personal budget.

Will the Minister commission a review of health and social care law, to strengthen and clarify rights and entitlements for disabled children and their families, including children with life-limiting conditions? That would help to bring about more integrated assessments and plans. Will she invest in supporting work to develop children’s palliative care managed clinical networks across England?

[Mark Tami]

The hon. Gentleman makes an important point. Does he agree that the Government need to speed up, and that they cannot apply the general criteria that they apply to everyone else? Those parents, those families, and those children need support straightaway, not after waiting for weeks—sometimes months.

[Jim Shannon]

I thank the right hon. Gentleman for his intervention and his wise words. I absolutely agree that we need to implement right away the response that families need. He is right: one size does not fit all. Every person’s case and circumstances are unique, so we need to respond with something that fits, quickly.

If not quickly met by the Government, those challenges will threaten Ministers’ ability to meet their end-of-life care choice commitment for children by 2020. We have to work to that timescale. We need that response to do away with the patchiness; there are parts where the Government are doing well and families get help, and other parts where they do not. I know that the Minister is committed to that, and hopefully her response will be helpful to all of us who are asking these questions.

We urge the Government to work with the APPG, and interested bodies and charitable groups, to implement the APPG’s recommendations. There has already been progress in the past few weeks. That is good news, and we are pleased about that. NHS England has decided to recognise children’s palliative care as an important priority in the NHS long-term plan.

I commend the Government, I commend the Minister for her commitment to the strategy, and I commend Health Ministers for the Department’s commitment to addressing health, and spending money on it. That is good news. Nobody in this House would not welcome that. I very much welcome it. Will the Minister assess the extent to which the NHS treats children’s palliative care as a priority, as it commits to in the long-term plan, and if so, how? Will she tell us a wee bit about how that long-term strategy and plan will work?

I think it is the hon. Member for Vauxhall (Kate Hoey) who says, “Jim Shannon gets more words into a minute than any other MP.” I am not sure that I have given my four-minute speech in one minute, but I have tried to compress what I wanted to say, and I gave the Minister my questions beforehand. There are hon. Members present who have a real knowledge of the subject matter. It is so important that we hear all their opinions as well.

I ask the Minister to update us on the progress that the Government are making in responding to all the APPG’s recommendations. I very much look forward to hearing her response. These children need help. The report is clear, and now we need to be clear on how the Government can and will make changes to ensure that these short lives, and the lives of loved family members, can be better. Sometimes we see only the child; we also have to see the families. I think the right hon. Member for Alyn and Deeside (Mark Tami) referred to that in his intervention. It is so important that we reach out and help. Our job as MPs is to do just that. We look to the Minister for the response that we all want.