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.
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?
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.
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.
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.
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.
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 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.
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.
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?
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?
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.
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.
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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?
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.
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.
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.
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?