Children with Life-limiting Conditions

Tuesday 29th January 2019 Westminster Hall

09:30

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered support for children with life-limiting and life-threatening conditions and their families.

I am conscious that other people want to speak, so I will limit my time and give them a chance to contribute, Ms Dorries. I am pleased to see the Minister in her place. I spoke to her last week and before today’s debate. I thank the Backbench Business Committee for selecting this important debate and the Minister for her attendance. I also thank everyone who is here to speak on behalf of their constituents. This matter is not for my constituency alone; it needs to be addressed UK-wide in a co-ordinated manner. As for the magnitude of the issue, 49,000 babies, children and young people live in the UK with health conditions that are life-limiting or life-threatening, and the number is rising. There are 40,000 in England alone.

I have three wonderful children and three perfect grandchildren. They are the best in the world, but every grandparent probably thinks that about their grandchildren. Hearing the news that one’s child has a life-limiting condition and is likely to die young is devastating. My heart always goes out to those who hear such dreadful news. The children have complex and unpredictable conditions and often need round-the-clock care seven days a week. Families have to cope with the knowledge that their child will die before them, and daily life for the whole family can become extremely challenging.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I thank the hon. Gentleman for giving way and congratulate him on securing this debate. Will he join me in praising the children’s hospice movement, including Tŷ Hafan, which serves my constituency in south Wales, for their excellent work in providing care not only for the children but for the families who need support?

[Jim Shannon]

I thank the hon. Gentleman for his intervention. He is absolutely right. By the way, several of today’s speakers applied for this debate along with me and I thank them also. Hospice care is important and I thank the hon. Gentleman for his contribution. Every one of us knows the role that hospices play in the lives of those who need help at a very difficult time. Although there are many excellent services, many families still have difficulty accessing the care and support that they need, which is why hospices are important.

Children with life-threatening conditions need palliative care from when their condition is diagnosed or recognised until the end of their lives. Families also need care and support throughout the trajectory of their child’s illness, including bereavement care after they have passed away. Palliative care for children includes, but is not limited to end-of-life care, and the two terms should not be used interchangeably.

[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.

[Several hon. Members rose—]

[Ms Nadine Dorries (in the Chair)]

I will impose an informal five-minute limit on speeches. Obviously, if Members go over the informal limit, I will have to impose a formal four or three-minute limit, so if everybody would realise that and be courteous, that would be great.

09:49

[Antoinette Sandbach (Eddisbury) (Con)]

It is a pleasure to serve under your chairmanship, Ms Dorries. I am grateful to the hon. Member for Strangford (Jim Shannon) for securing the debate and for his continuing interest in the matter.

It is exceptionally difficult to care for a child with a life-limiting condition. The Government have made progress on making things slightly easier in areas such as bereavement care, but I recognise that more needs to be done to support families who are going through the process, especially in terms of palliative care. The issue affects not just the 49,000 children in the UK who live with life-limiting or life-threatening health conditions, but their families and those who care for them. Those who are suffering from such conditions need the best medical care possible, but the families require care too, whether that is in the form of respite breaks or financial support for adjusting their homes and lives.

I sympathise somewhat with the Minister: she has to respond on behalf of her Department, but it is not just her Department that acts in this space. Local authorities, the voluntary sector and other Departments all have a role to play, and it will be possible to tackle the challenges faced by families only by taking an integrated approach that encompasses all of those groups.

[John Howell (Henley) (Con)]

My hon. Friend mentions the adjustments that need to be made in people’s homes. To what extent does she think local councils are living up to expectations in that respect?

[Antoinette Sandbach]

I will come on to that point, but I know that in my area the situation is certainly not as good as it might be.

I hope that the Minister will commit to ensuring that children have a right to an integrated assessment, a plan and a personal budget to address their individual needs. Likewise, I hope that she will agree to review health and social care law, not only to strengthen the rights and entitlements for disabled children and their families, but to clarify them. That clarification would be hugely welcome, because uncertainty leads to some local authorities failing to meet their obligations. For instance, Together for Short Lives reports that 21% of local authorities are failing to meet their legal duty to commission short breaks for disabled children. That postcode lottery is deeply unsatisfactory and requires the Minister’s attention.

I was concerned to discover from December 2017 data that only one of the four Cheshire clinical commissioning groups was developing a strategy or care pathway for children with life-limiting conditions. The same data shows that although some of my area’s CCGs offer out-of-hours paediatric palliative care consultants, community children’s nurses and psychological support, others do not. Given that families have 24/7 responsibility, should not the NHS? My area is lucky to have specialist paediatric care close at hand, thanks to Alder Hey Children’s Hospital, but it is clear that even in Cheshire more must be done, which probably means that more funding must be put in place.

The all-party parliamentary group on baby loss wrote to the Chancellor at the end of last year to ask for a guarantee of the future of the NHS England children’s hospice grant beyond March 2019; for an increase in its value to £25 million per year; for parity of funding between children’s and adult hospice and palliative care charities in England; and for a funded, cross-departmental children’s palliative strategy for England. I was pleased to see that the issue received attention in the NHS long-term plan, but I am concerned by the mismatch between NHS England’s 27 December announcement about children’s hospice funding under the plan, and what was published in the plan itself on 7 January: the announcement said that the money was for hospice funding, but the plan said that it would be for palliative services, including hospices. Will the Minister clarify whether that £25 million will be for children’s hospices only, or for a wider group of children’s palliative care services?

Likewise, will the Minister guarantee that the £11 million children’s hospice grant will be protected and increased as a result of the long-term plan? It is vital that we resolve that, because in 2006-07 the children’s hospice grant contributed 14% towards the cost of providing clinical care in children’s hospices across England, but by 2015-16, when the grant had risen to £11 million, it contributed an average of just 8%.

I hope that the Minister will offer the reassurance that so many families deserve, not just about the finances but about integration and ending the postcode lottery. I am sure all hon. Members agree that these families need support, but now we must build on that agreement and implement a sustainable, compassionate plan to support them.

09:54

[Carolyn Harris (Swansea East) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Dorries. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate and on his speech. We have campaigned together on many issues and I am happy to participate in his debate today.

Many hon. Members will be aware of my campaigning work to support families who have lost a child. I am very proud to have brought about the introduction of the children’s funeral fund to support grieving parents with the costs of their child’s funeral. My campaign came after my own experience of losing my son Martin and having to take out a loan to cover his funeral.

I lost Martin very suddenly in a car accident. From the perspective of a parent, I have no idea whether it is worse to lose your child suddenly, like blowing out a candle, or to watch them pass away slowly from a life-threatening or life-limiting condition; all I know is that, whatever happens, it is the end of the world. It feels as if it is a bank holiday and the world is still going on around you—you cannot comprehend why people are still putting the kettle on, taking the milk in and having the post delivered. It is such a painful experience: nothing can prepare you for it, and realistically it is not something that you will ever recover from. Nothing will ever be the same again. You think that you will never worry again about anything like how much the telephone or electricity bill is, because nothing will ever matter again, but in reality it is more painful: you worry more and you keep waiting for that moment when something really bad will happen again. I think that stays with you for the rest of your life.

Tragically, the parents of 5,000 babies, children and young people have to face that dreadful pain every year. It is a pain that nobody can help them with, but one thing that we can do for those families at such a difficult time is try to lessen or ease their financial worries. There are very many additional costs when you lose a child, apart from the funeral. At the time, it seems as if all the other things do not really matter, but they do. Someone whose child has a life-threatening illness has to think about parking at the hospital, childcare for their other children, making sure they have clean pyjamas, pants and vests, and maybe having to give up work to look after them.

When a child passes away as a result of a long-term disability, the family may well have been receiving a benefit because of the child’s health, such as carer’s allowance, disability living allowance or child benefit. As well as the personal loss, they will face a huge and immediate financial loss. I will never, ever forget losing Martin on a Monday—I had cashed his family allowance that morning—and getting a letter the following week asking me to repay it because I had sent in the death certificate to say that Martin was not with me anymore. As a parent, you cannot imagine how painful it is even to get that letter, let alone to try to find the money to pay back. It may be small, but for a parent it is the end of the world.

That is not the only financial hardship that parents face when they lose a child; as I said, there is also the cost of the funeral. Royal London has found that the average cost of a funeral in 2018 was £3,757. For someone who is not anticipating losing a child, or who is on a low income, that is an insurmountable amount. Some people have actually asked me why I did not have insurance. Why would you insure a child? Why would you consider insuring against a child’s passing?

As hon. Members may be aware, health in Wales is a devolved matter. I am very proud that the Welsh Government led by example and introduced a children’s funeral fund in 2017. I will say only that I had a letter from the Prime Minister on Easter Sunday last year, yet we still do not have a children’s fund throughout the United Kingdom. Scotland has introduced it and, in the absence of Stormont, Northern Ireland has done it on a local level, so it is only parents in England who are not getting support with their child’s funeral. The Welsh Government, who were the first to introduce such a fund, have announced an additional £1 million investment to support the work of the end-of-life care implementation board. That funding will go towards a variety of areas, including training for staff on having difficult end-of-life care conversations with parents.

I give personal thanks for the work of the wonderful charities Tŷ Hafan, Hope House and Tŷ Gobaith, which provide care to children and families in my constituency and across Wales. After I lost Martin, I spent a lot of time trying to do what I could to help other families. I provided pastoral care for mentally and physically handicapped children, and I went to work for a children’s cancer charity. I felt like my personal experience would help those parents. Today I still talk to parents who have lost a child and try to reason with them by saying, “The thoughts that you are thinking, the worries that you are having, the fears and the fright that you will experience day in, day out for the rest of your life—they’re real but they’re not abnormal, and you need to share.” As a country, we should support these people financially and give them that little bit of comfort, so that it is only the emotion—something nobody can ever help you with. I urge the Minister to do whatever she can to ensure that families in such a position never have to worry about the incidentals of life and can grieve with dignity and peace of mind.

10:00

[Fiona Bruce (Congleton) (Con)]

It is humbling to follow the hon. Member for Swansea East (Carolyn Harris). I want to put on record my respect for her campaigning on this and other issues, and for my constituency neighbour and hon. Friend the Member for Eddisbury (Antoinette Sandbach).

I commend the work of the Donna Louise Children’s Hospice in Stoke-on-Trent, which provides children’s and young people’s hospice services across Staffordshire and south-east Cheshire. It has written to me this week—given that time is short, I will pass the Minister a copy of the letter after the debate. It talks about the quality of palliative care as patchy:

“The way in which NHS CCGs and local authorities plan, fund and monitor children’s palliative care in hospitals, children’s hospices and the community represents”—

as we have heard—

“a postcode lottery. Staffordshire has no coherent plan and this is reflected in the poor financial support the Hospice receives from local commissioners. Donna Louise receives 8.9% of its income from the NHS”.

The hospice calls on the Government and NHS England

“to consider appropriate mechanisms to bridge the children’s palliative care accountability gap.”

I want to spend most of my speech talking about an issue that I know is uncomfortable for some people to hear about. For that reason, I am delighted that you are in the Chair, Ms Dorries, because you have spoken about this issue on a number of occasions. Many families face a difficult decision when a child in the womb is diagnosed with a life-limiting or life-threatening condition. This is not a small issue: in 2017 there were a total of 3,314 ground E abortions on the grounds that the child was diagnosed with a substantial risk that, if born, they would suffer from physical or mental abnormalities, such as being seriously handicapped. Parents have to make really agonising decisions.

A few years ago, I held an inquiry in this place on the difficult situations that parents face when their child is diagnosed in this way and they have to consider an abortion. We took evidence from dozens of witnesses. Some had come under huge pressure to have an abortion, and the support they were given to consider keeping their baby was very limited. Many told us that they were steered towards an abortion, and they felt like the medical profession was irritated by them. Many felt like they were given no information on the support they might get; often the best information they got was through contacting charities, which could put them in touch with parents who were bringing up children—often very successfully. Those children brought great joy to their families, but the medical professionals did not give the families the information they needed to make a decision that was right for them. Some told us that all they received was a leaflet telling them how to have an abortion. The mothers who had kept their children, even if it was for a very short time, felt like they could grieve and care for their children in a way they had not been able to do otherwise. One mother had to have an abortion with her first baby and then decided she would keep the second, even though she knew the condition was life-limiting. She felt like there was a much better outcome for her and her family’s going through the grieving process.

The inquiry made a series of recommendations—I will pass a copy to the Minister because time is very short. I hope she will consider them and respond to me. Many people generally find this issue a very difficult one to address, as do—I am sorry to say—Ministers. Many of the recommendations in that report, which was published a few years ago, are still valid today. We recommended that guidelines for the medical profession should include training for obstetricians, foetal medicine specialists and midwives on the practical realities of the lives of children who have such conditions, so that they can better advise parents and give them better information when they make this difficult decision. One parent summarised what many others reported:

“Guidelines and standards need to be set in place”

so that all hospitals can meet a certain standard. Can the Minister assure me that she will look at our report and perhaps produce guidance to ensure that all mothers feel like they can make a genuinely informed decision when they are carrying a baby with a life-limiting condition? Does she agree that we ought to provide much better information, so that parents in such circumstances can make an informed choice?

[Ms Nadine Dorries (in the Chair)]

I am afraid that I will now have to put a formal time limit of four minutes on Back-Bench speeches.

10:06

[Stephen Lloyd (Eastbourne) (Ind)]

It is a pleasure to serve under your chairmanship, Ms Dorries. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. Given that we are reduced to four minutes each, I will ensure that I keep to that.

Like other hon. Members, I want to bring attention to two outstanding children’s hospices that serve my constituency: Chestnut Tree House and Demelza. They are not based in Eastbourne, but they do a considerable amount for many of my constituents and their children. Both are hospices and also deliver outreach services to very poorly children at home. I want to put that on record, as they do outstanding work.

I know the Minister is getting a long shopping list, so I will keep my requests fairly simple. I want to focus on two areas, both of which I am confident the Department can respond to fairly swiftly. First, NHS England states that its end-of-life care programme for children and young adults is managed through a cross-system governance board. That makes sense. It includes a lot of the key providers, such as the Department of Health and Social Care, clinical commissioning groups, NHS England and others. However, I discovered that there is no representation on that cross-system governance board of the children’s palliative care sector—the charities and groups that represent families and children and really know their stuff. I urge the Minister to look at that again.

The other serious issue—I am sure the Minister is aware of it, and I would welcome information from her on what is being done to respond—is that, according to the Royal College of Paediatrics and Child Health, there are only 14 children’s palliative care consultants across the UK. I am sure the Minister would agree that that is completely inadequate. Perhaps the Minister can let me know—either at the end of this debate or in a letter—what plans NHS England and the Department of Health and Social Care have to work with the Royal College to increase that number. Fourteen is clearly inadequate.

Let me end with a constituent’s issue that brings home the issue of long-term conditions and the end of children’s lives. This subject is incredibly important—we are talking about 45,000 youngsters—and I want to bring it down to earth and make it real. I am working with a constituent couple, Mr and Mrs Spence, and their teenage daughter Connie, who I have known for well over 10 years. She is now 16 or 17 and still has—obviously—a progressive, life-threatening condition. She is an amazing girl. Her parents have done fantastic work in looking after Connie and working with Demelza, giving her a good life.

Recently, Mr and Mrs Spence’s CCG told them that they would be allowed only three nappies a day. Without going into too much detail, we all understand that a very disabled 17-year-old girl—or any of us in her situation—would usually use six or seven nappies a day. They have been told that she can have only three. That is completely unacceptable, highly inappropriate and just wrong. The CCG pleads costs, as does the local trust. I will be writing to the Minister with details and hope that she will support me by making representations to the CCG to stop that completely inappropriate cut.

10:10

[David Linden (Glasgow East) (SNP)]

It is a pleasure to see you in the Chair, Ms Dorries. I commend my friend, the hon. Member for Strangford (Jim Shannon), for securing the debate. As one might expect, I wish to offer a few examples from Scotland, where I believe that we have a good story to tell, although we still have so much more to do. In the context of Scotland, it is important to make the distinction that funding for children’s palliative care is given parity of esteem with adult care. That is a point that I have made before to the Minister down south.

I know from my good relationship with Children’s Hospices Across Scotland, known as CHAS, that it is one of Scotland’s most well-known and best-loved charities. That is why it was right that in 2016, the SNP Scottish Government announced that they were committing £30 million in funding to CHAS, commencing in the financial year of 2017-18. That funding provides half of the agreed funding costs of running CHAS; that is very important. Not long after I was elected, my hon. Friend the Member for Airdrie and Shotts (Neil Gray) and I had the honour of visiting Robin House in Balloch, where I saw at first hand the absolutely amazing work done by CHAS to provide compassionate care for children with a life-shortening condition.

At this juncture, I pay tribute to my good friend and colleague, Alex Neil MSP, a former Health Secretary in the Scottish Government, who drove that vital funding boost for the sector. His backing for research, in particular, was immeasurable. We know from experience that engaging comprehensively with the issue through research is an absolute necessity to determine the needs of those with life-limiting and life-shortening conditions.

I am conscious that other hon. Members wish to contribute to the debate and, in particular, raise issues through the prism of English funding, so I will make a couple of brief points before I conclude. First, it felt as though we were making a lot of progress on the baby benefit bar but I am not sure how far we have got. I would therefore welcome an update on that from the Minister.

Secondly, on the issue of workforce, having spent last night participating in debate on Second Reading of the Immigration and Social Security Co-ordination (EU Withdrawal) Bill, I am concerned that there are far too few professionals with the skills, knowledge and experience required to provide children’s palliative care in hospitals and children’s hospices. Can the Minister outline what strategies the Government are pursuing to meet workforce challenges in future? That is a major issue.

Thirdly, on the difficult issue of when a child finally passes away, I am glad that my own Government, in Scotland, announced last year that they were taking action to ensure that all burial fees for children are abolished. When I was first elected to Parliament, the 32 local authorities in Scotland had different policies and charges for burial fees—it was very much a postcode lottery, so I welcome that change. I am concerned, however, that we need to do more to support families when their child eventually passes away. I absolutely welcome the Parental Bereavement (Leave and Pay) Act 2018, which was piloted through this place by the hon. Member for Thirsk and Malton (Kevin Hollinrake), but I remain disappointed that the scope of the Bill was so narrowly defined. I hope that we will have the opportunity to go back and widen it in the future.

In summary, there is plenty of work for us to do and get on with to support children with life-limiting conditions, as well as their families. We look to the Minister to take forward the consensual and strong cross-party support we have heard about today and deliver a better standard of research, funding and care for vulnerable children and their families. Again, I thank my friend, the hon. Member for Strangford, for securing this important debate. I hope that we can make progress going forward.

10:14

[Ellie Reeves (Lewisham West and Penge) (Lab)]

It is a pleasure to speak in the debate and I thank the hon. Member for Strangford (Jim Shannon) for securing it.

Over 40,000 children and young people in England have a life-limiting or life-threatening condition, so we must not underestimate or undervalue the support that both the NHS and charity care sectors provide to both patients and their families. I am proud to represent the seat where the purpose-built hospice movement has some of its origins, with the foundation of St Christopher’s Hospice by the late Dame Cicely Saunders. South London is also home to the renowned Demelza specialist children’s hospice. Demelza was started more than 20 years ago and, in that time, it has grown to include two hospices and a community scheme in East Sussex, to which the hon. Member for Eastbourne (Stephen Lloyd) referred.

Demelza’s hospice in Eltham, which opened in 2009, serves the boroughs of Bexley, Bromley, Croydon, Greenwich, Lambeth, Lewisham and Southwark. It is a specially designed hospice that provides first-rate care to the children who use it, while also supporting their families. I recently met the chief executive of Demelza children’s hospices, and I appreciate the lengths that he and his colleagues in the voluntary sector go to to make sure that the whole family is cared for. Their service is about a lot more than just the child and the medical and palliative side of care. Not only do charities like Demelza ease pressure on the NHS, but by providing support, advice and respite for the whole family, the assistance that they provide is invaluable. Having a child with a life-limiting condition can cause unimaginable strain on a family, and the smallest gestures have a big impact during those difficult times.

I follow the work of the all-party parliamentary group for children who need palliative care and I pay tribute to it. The APPG, alongside Together for Short Lives, recently published a report into end-of-life care for children. Worryingly, the report concluded that children who need palliative care are often subject to a postcode lottery of patchy service. The recent NHS long-term plan acknowledges that for far too long, funding for children’s palliative and end-of-life care through the children’s hospice grant has not kept pace with growth in clinical care costs or inflation. I welcome the plan’s pledge to boost funding for children’s hospices by up to £25 million a year by 2023-24, but the sector still has many funding requirements that need to be addressed if the hospices are to continue delivering such world-class care.

In October, I spoke in the Westminster Hall debate on hospice funding and the NHS pay award, and I mentioned that without additional Government support, local children’s hospices could face difficult choices about reducing services. The additional estimated cost to staffing budgets of matching the pay award for the NHS, which hospice staff rightly deserve, would be £200,000 every year. I hope that the additional funding will go some way to allay the fears of local hospices, but we cannot assume that the funding pledged will still be adequate in five years’ time.

We have much to be proud of in our care sectors, but there is still a great deal more to do. The funding commitments are welcome but are not a one-fix solution to the many issues faced by children with life-limiting conditions and their families. I hope that the continued hard work of the hospice workers who run Demelza and other hospices across the country can continue to bring care and compassion to families at the most difficult times, and that they will have the funds and resources to do so.

10:18

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I am delighted that the hon. Member for Strangford (Jim Shannon) secured this debate on an issue that is so important for so many children and families across the country. It goes to the very heart of the work done by the APPG for children who need palliative care, of which I am vice-chair, alongside the chair, the hon. Member for Sleaford and North Hykeham (Dr Johnson).

Babies, children and young people with life-limiting and life-threatening conditions rely on a range of social care services provided by a variety of statutory and voluntary organisations such as short breaks, practical assistance at home, home adaptations and support to access travel and leisure activities. A good example of one such provider, which celebrated its 15th birthday this year, is St Oswald’s Hospice in Newcastle. It provides residential short breaks and care to babies, children and young adults. Up to six children and young adults can stay at St Oswald’s at any one time, in a beautiful, relaxed, home-from-home environment. Indeed, one mother said about the hospice:

“Having respite at St Oswald’s for a couple of nights a month helped to give me a break. While I was doing all the medical care for my son, I couldn’t be a mum. Being at St Oswald’s gave me time to step back and just enjoy playing with him and having fun.”

Seriously ill children and their families across the country need short breaks and the respite provided by skilled, highly trusted people who can meet the child’s often complex health needs. It might only be for a few hours, or overnight for a few days at a time, but those short breaks are vital to help parents and siblings manage the immense stress and 24/7 pressure that a child with a life-limiting condition can bring. The evidence suggests that such respite care helps to support children and their family’s physical and mental health, and mitigates the risk of parental relationships breaking down.

Local authorities of course have a legal duty to provide short breaks for disabled children and their families, to be planned and funded jointly by local councils and the NHS. A Government-commissioned review of funding arrangements for palliative care made it clear in 2011 that that duty must include respite care for the carers and families of children requiring palliative care. Despite that, however, the charity Together for Short Lives found that too many CCGs and local authorities in England fail to plan and fund short breaks. More than one in five local authorities do not commission short breaks for children with life-limiting and life-threatening conditions, despite having a legal duty to do so, although 84% of CCGs reported that they commission short breaks for children who need palliative care.

Furthermore, the Disabled Children’s Partnership, of which Together for Short Lives is a member, has gathered increasing evidence of cuts to services for disabled children. Is it any wonder that that is taking place? The Local Government Association estimated that children’s services face a £3.1 billion funding gap by 2025, just to maintain existing levels of service. Given such findings, I shall be grateful if the Minister confirms in her response how she holds sustainability and transformation partnerships, integrated care systems, CCGs and local authorities to account for the way in which they plan and fund short breaks.

I am also keen to highlight the importance of the provision of short breaks to all families who receive them, not only those families with children who need palliative care, but those with disabled children whose conditions can be life-limiting as well. I was able to witness that on Friday, when I visited the excellent Alan Shearer Centre in Lemington in my constituency. It provides specialist respite services in a specially adapted environment. One of the key concerns expressed to me at the centre was about how the level of respite care support that disabled children and their families receive can be halved when a person’s condition has not changed at all—the only thing that has changed is their age. Many families described that as feeling as if the rug has been pulled from under their feet.

I also want to highlight the work of the Rainbow Trust, which provides vital support at home for so many families, including in Newcastle. Will it be possible for the recently announced funding of £25 million for palliative and end-of-life care to be used to provide that emotional and life-affirming support for such families? Children with life-limiting and life-threatening conditions face enough challenges without the added stress of not having the support they need.

10:23

[Lyn Brown (West Ham) (Lab)]

I am grateful to you, Ms Dorries, for calling me to speak, and to the hon. Member for Strangford (Jim Shannon) for giving me the opportunity to raise an urgent case.

My constituent, Shakil Malji, has a daughter, Maryam, who is five months old and a beautiful, engaging child. Recently, Maryam was diagnosed with a terrible condition called spinal muscular atrophy, type 1. The effects of SMA1 if left untreated are horrific. The disease causes muscles to waste away even before they can properly develop. It reduces and then takes away the ability to do basic things unassisted, including walking, crawling, sitting, eating, drinking and breathing.

Maryam’s family are devastated—of course they are. However, an effective treatment developed by international drug company Biogen—remember that name—does exist: a new drug called Spinraza. Clinical trials, which ended more than two years ago in 2016, showed that Spinraza is effective and can provide a lifeline—a longer life and less suffering; what else is medicine about? Spinraza is available on the NHS in Scotland and in 23 other European countries. It is licensed for use in the UK, but it is not available to Maryam because Biogen and NICE have not yet reached an agreement, and because last November Biogen’s extended access programme was closed; I have been told repeatedly that it will not reopen. To date, 220,000 people have signed a petition about ensuring that all children with SMA get access to Spinraza through the NHS. I have written to the Secretary of State to encourage him to intervene. The NICE approval process is taking far too long.

I am here to talk about Maryam, however, and to argue that Biogen has a special and moral responsibility to ensure that she receives the care she needs. SMA is genetic and Abdullah, Shakil’s son, was also diagnosed when he was very young. Shakil was offered access to Spinraza for Abdullah as part of the clinical trial. That trial was successful and led to Biogen being able to sell the drug. Abdullah, unfortunately, was still very weak from his condition, and he died in 2015. But Maryam could have that drug now, soon after diagnosis, which would bring the family hope again.

Shakil feels that his family have been used. His son helped to test the drug but it is now being denied to Abdullah’s sister. Biogen offers to work with NICE towards what it calls a “bridging solution”, if and when NICE commits to a permanent agreement to pay for SMA patients to access Spinraza. Shakil and I have been encouraged by Biogen to campaign for that, even as the weeks pass and as Maryam inevitably gets weaker.

I call those tactics heartless. In effect, Biogen’s approach is to hold a baby’s life in its hands and to ask a still grieving family to use their child to get the deal that the company wants with NICE. Shakil and his family have suffered so much, and Maryam needs Spinraza as soon as possible. I will not let the Government or NICE off the hook on this one, and I would like to meet the Department. Biogen, however, needs to step up now to offer a way forward for Maryam—she cannot wait. Biogen, do the decent thing!

10:26

[Mary Glindon (North Tyneside) (Lab)]

It is an honour to serve under your chairmanship, Ms Dorries.

I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate. He and I are both members of the all-party group for muscular dystrophy, so I know that his commitment to the issues being discussed this morning is genuine.

Following on from my hon. Friend the Member for West Ham (Lyn Brown), I will talk about Spinraza, because nothing is more fundamental for anyone with a life-limiting or life-threatening condition, or their families, than to have access to treatment that will give the chance of a better quality of life and, possibly, some chance of longevity.

As my hon. Friend said, one of the rare conditions that until the last few years has had no proven treatment is SMA. There are four types, and the most severe is type 1. Infants diagnosed with that have a life expectancy of no more than two years. The condition affects the lower motor neurones in the spinal cord, leading to loss of mobility and eventually of the ability to breathe and swallow.

The drug Spinraza, which was developed and marketed by the pharmaceutical company Biogen, is the only treatment that has proved successful for children with SMA. Spinraza was granted a marketing authorisation by the European Medicines Agency more than 18 months ago. It is available in 24 European countries including Scotland, as has been said, but not in other parts of the UK.

The APPG, which I chair, has supported the work of our excellent secretariat organisation, Muscular Dystrophy UK, and other groups to press for Spinraza to be approved by NICE. Many MPs across the House with constituents who suffer from SMA feel the frustration of families waiting for Spinraza to be approved. So far, however, progress has been slow. That is largely due to the fact that Spinraza has been assessed by NICE under the single technology appraisal, or STA, route, which is not appropriate for such a rare condition. That route is normally used for more common conditions, and it is now a year since the assessment began. Also, in August, when NICE published its initial decision on access to the drug, it did not recommend Spinraza for use on the NHS. That was a bitter blow for all the families, including the family of young Sam McKie from North Tyneside, who has the condition.

Biogen opened an expanded access programme globally in 2016, as an interim solution for patients with infantile-onset SMA. In the UK, the programme was extended to support continued access for those patients until NICE completed its appraisal. To date, more than 80 eligible children in the UK have received the drug free of charge. Under the timeframes provided by NICE, the final appraisal document was scheduled for last November; therefore, disappointingly, Biogen closed its access to the EAP for new patients.

Since August, the APPG has been active in pressing NICE, NHS England and Ministers to be flexible in finding a way forward, and I raised the issue at Prime Minister’s questions in September. There is an impasse, because NICE continues to require that Spinraza should be cost-effective through the STA route, but Biogen has pointed out that, given the smaller patient population in rare diseases, it is inappropriate to expect treatments to achieve the same cost-effectiveness thresholds as medicines in disease areas that have much larger patient populations.

10:30

[Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)]

It is a pleasure to serve under your chairmanship, Ms Dorries. I thank everyone who has taken part in this extremely important debate. It is an absolute pleasure to follow the hon. Member for North Tyneside (Mary Glindon), who raised the issue of Spinraza, and the hon. Member for West Ham (Lyn Brown), who spoke about her constituent Maryam and about why this issue must be taken forward by the UK Government. I hope the Minister will agree with her.

I thank the hon. Member for Strangford (Jim Shannon) for securing this important debate and for speaking so passionately. Week in, week out in the House of Commons he champions the most vulnerable in our society. He gave a poignant speech to support children with life-threatening conditions. By securing this debate, he has let us all speak about the important issues raised by those conditions and the charities that do such excellent work, including Together for Short Lives, the Rainbow Trust, the Children’s Hospices Across Scotland at Robin House and CLIC Sargent, to name just a few. I also thank the Backbench Business Committee; I was extremely pleased to be part of the cross-party group that requested the debate. I have chaired the all-party parliamentary group for disability since 2015; we are working extremely hard on these issues, and I thank everyone involved in it.

I should like to mention my constituent Gary Butterworth of Westwood Golf Club, who, as well as playing lots of golf, has taken the time to raise more than £20,000 for Children’s Hospices Across Scotland. Every year I support the efforts of the club and Gary to fundraise; we will visit Robin House together later this year.

I also thank my constituent Lisa Quarrell, who has worked so hard over the past year not only to look after her six-year-old son Cole, who has experienced repeated epileptic seizures and whose health has deteriorated dramatically, but to try to access medicinal cannabis since the Home Secretary took up that issue. I hope the Minister will look at those issues very carefully, because the care pathways for families are not adequate. Lisa has battled day in, day out just to access the Home Secretary’s recommendations. Those families do not have the energy, in addition to caring for their children, to battle the system.

A number of issues have been raised in the debate. I want to stress the care and emotional and practical support that needs to be put in place for siblings. When a young child has a life-threatening or life-limiting condition, siblings often feel, not ignored, but not the focal point of the family’s daily life. There should be support for the whole family unit, and particularly for siblings. We heard about the need for family-friendly working policies and psychological support. I refer to my entry in the Register of Members’ Financial Interests, having worked as a psychologist.

Some remarkable speeches were made; I thank the hon. Member for Eddisbury (Antoinette Sandbach), who does such fantastic work in the all-party parliamentary group on baby loss, for raising the important issue of personal budget plans. Families should not have to think about finances at such a grave time in their lives. If I was wearing a hat, I would take it off to the hon. Member for Congleton (Fiona Bruce) for her excellent work in Parliament to strengthen families, provide support and raise issues that many find extremely difficult to broach. I hope the Minister looks very carefully at the hon. Lady’s recommendations.

My hon. Friend the Member for Glasgow East (David Linden) outlined the Scottish Government’s developments and funding for CHAS; I thank him for his work on those issues. The hon. Member for Swansea East (Carolyn Harris) spoke so poignantly that I was almost in tears while listening to her talk about the end of the world for individuals and their families. We must take that on board. I am sure the Minister heard those words clearly.

The hon. Member for Eastbourne (Stephen Lloyd) paid tribute to all his local hospices and spoke about the important issue of the number of consultants available. The Minister should look at that issue closely and meet the hon. Gentleman to discuss it. The hon. Member for Lewisham West and Penge (Ellie Reeves) spoke about the fantastic work of the specialist hospices in her constituency, and the need for funding to preserve and enhance that work. I thank the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) for speaking about the importance of respite, which too often is forgotten about. Respite is not a dirty word; it is not about respite from your child but with your child, to enjoy them, to play with them and to do the natural things that families do.

I have a couple of questions for the Minister. Can she confirm that total NHS funding for children’s palliative care will not fall as a result of the long-term plan, and that children’s hospices will not receive less funding? Will she clarify whether the increase in funding from £11 million to £25 million is intended to be open to providers of emotional and practical support, alongside the hospices? If not, what will be provided to ensure that we have that emotional and practical support? What steps will the Minister take to encourage clinical commissioning groups and local authorities to increase commissioning for the sibling support that I mentioned?

10:39

[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?

10:46

[The Minister for Care (Caroline Dinenage)]

Of course, Ms Dorries. It is a great pleasure to serve under your chairmanship. I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate and on his enduring and passionate commitment to this incredibly important cause.

We heard incredibly powerful speeches from both sides of the Chamber, with lots of great examples of amazing practice in different regions. Some worrying issues were mentioned; I thank the hon. Members for West Ham (Lyn Brown) and for North Tyneside (Mary Glindon) for raising the issue of the life-saving drug that they are keen to get hold of for their constituents. I will of course commit to looking at that with the Secretary of State, but I share the concern of the hon. Member for West Ham that children should never be used as pawns in communications between drug companies and Government organisations.

[Lyn Brown]

May I just press the Minister to agree to the urgent meeting I requested?

[Caroline Dinenage]

Absolutely. The meeting probably would not be with me, because the issue does not fall under my portfolio, but it is really important that the hon. Lady meets the relevant Minister.

The debate has been very broad, and a lot of questions were asked. I will attempt to answer as many as I can, but I commit to writing to hon. Members with all the answers they asked for if I miss any out. Whenever we discuss this issue, we must keep at the back of our minds the powerful point made by the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), despite her throat issues, that at a time of their lives when they are dealing with unimaginable stress and grief, parents should not have to fight for what they need to best care for their children.

The hon. Member for Swansea East (Carolyn Harris) painted a picture of how the world ends when you lose a child. I cannot even begin to imagine that, but it must feel the same to be told that your child may die at a young age. That must, quite simply, be devastating. As the hon. Member for Strangford said, almost 40,000 children and young people aged 19 or under in England live with a life-limiting condition and may need palliative care. Of those, around 1,000 die every year.

As outlined in the NHS long-term plan, we know that children’s palliative and end of life care have not kept pace with the growth in clinical care costs or with inflation. NHS England’s hospice grant programme provides £11 million a year for children’s hospices, which are incredibly valuable. I have spoken before—probably in this room—about my great passion for children’s hospices. That comes from my mum who helped raise money to build Naomi House children’s hospice just outside Winchester, and throughout my twenties she made the whole family partake in a range of humiliating fundraising exercises to raise money for that. I went to visit Naomi House again last year, many years later, and I saw at first hand the incredible, valuable services that it offers, not just for end of life care, but because of its respite and outreach work, which is a lifeline for so many families.

Hon. Members will know the invaluable services offered by children’s hospices, and I was pleased that in the long-term plan additional funding has been made available each year for children’s palliative and end of life care services. I understand the confusion about the different amounts that have been mentioned and issues around that, and Department officials are currently working with NHS England to clarify those numbers and what they mean. I am clear that funding for children’s hospices is vital. We must ensure they get the money they need, and that money must increase from its current levels.

As the hon. Member for Strangford pointed out, there is regional variation in how palliative care is delivered. I know that such care is exceptional in some parts of the country, and many staff up and down the country go above and beyond to ensure that experiences for children with life-limiting conditions, and those at the end of their life, are as good as they can be. We know, however, that there are areas where we need to do considerably more, and NHS England is firmly focused on providing support and challenge to achieve that. Choice at the end of life is a centrepiece of the Government’s drive to improve end of life care, and for choice to be meaningful it needs to be personalised and matched by healthcare services that respond in an effective way that places patients, families and carers at the heart of decision making. We know when we achieve that that we have got it right, but also that we have a long way to go. I pay tribute to the all-party group for children who need palliative care, and charities such as Together for Short Lives, and the work they are doing to take that crusade forward.

[Catherine McKinnell]

I appreciate the commitment made by the Minister that her officials will clarify those figures. Will she also commit to ensuring that children’s hospices do not receive less money as a result of the long-term plan? Can she make that reassuring commitment to everybody watching the debate today?

[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.

10:59

[Jim Shannon]

I thank you, Ms Dorries, for enabling all Members to speak today, and I thank the 17 right hon. and hon. Members who have spoken for their personal and incredible contributions, which came from every region of Great Britain and Northern Ireland. Their constituents should be proud of their elected representatives who made such significant contributions to the debate. I thank the Minister for her compassionate and understanding response, and for her obvious interest in and commitment to improving the situation. The meetings that she will hold will be an indication of how that goes. Today this House shone a light on an issue that has united us. Is it too much to hope that before the day is out, we may unite on other things as well?

Question put and agreed to.

Resolved,

That this House has considered support for children with life-limiting and life-threatening conditions and their families.