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Stuart Andrew (Pudsey) (Con)
I beg to move,
That this House has considered support for children and young people with life-shortening conditions.
Mr Percy, may I say what a pleasure it is to serve under your chairmanship for the first time? [Hon. Members: “Hear, hear.”]
Prior to entering Parliament, I spent most of my working life in the hospice movement, with both adults and children. I worked in hospices, including Hope House in Oswestry; East Lancashire hospice, which cares for adults in the east Lancashire area; and Martin House children’s hospice, which cares for children in the Yorkshire area. During that time, I saw children and their families at their most vulnerable, looking for any kind of solace in what are probably the most challenging circumstances that any of us could possibly imagine.
In my 14 years working in the sector, I saw the hospice movement adapt and grow to meet the needs of children and young people as medical technology and provision developed. That growth was achieved by listening and putting the patients first at all times. However, unfortunately, there are still cases across the broader palliative care sector where that does not always happen, and that is why this debate is so important. There are currently 49,000 children and young people—and the number is rising—living in the UK with life-shortening conditions.
Nick Thomas-Symonds (Torfaen) (Lab)
It is a pleasure to serve under your chairmanship, Mr Percy. I congratulate the hon. Member for Pudsey (Stuart Andrew) on securing such an important debate. He just quoted a statistic. Does he agree that data collection is one of the most important factors? Robust data collection is needed so that we do not underestimate the number of children who are suffering from life-shortening conditions.
Stuart Andrew
The hon. Gentleman makes an important point, which I will come to later.
Some 49,000 children and young people are living with conditions that are life shortening, by which we mean conditions for which there is no reasonable hope of a cure and from which most of those young people are expected to die. The conditions can include conditions for which curative treatment may be feasible but can fail, as is often the case with cancers or congenital heart diseases; conditions for which premature death is inevitable but where there may be prolonged periods during which the child is well, such as Duchenne muscular dystrophy; progressive conditions such as Batten disease, without any curative treatment; and irreversible, but non-progressive, conditions that cause severe disability, leading to susceptibility to health complications and premature death, such as severe brain injuries.
The number of young people affected by one of those four categories of condition is equivalent to one child in every single school, and 50% of the 5,000 children who die in the UK each year will have one of those conditions. Of course, the number of people affected in other ways is much higher. Parents, siblings and other family members and friends can bring the number close to 400,000 people, which equates to more people than the population of the city of Leicester.
The 49,000 children and young people need palliative care from the point at which their condition is diagnosed or recognised—often at birth—until the end of their lives. There is an entire package of outcomes that good palliative care should achieve, which is quite different from that which adults receive given that children often need care throughout their entire life. Good care should meet children’s physical, social and emotional needs, enhancing their quality of life to ensure that the child and their family can come to terms with such life-altering issues.
David Simpson (Upper Bann) (DUP)
I congratulate the hon. Gentleman on obtaining this important debate. I am sure that many people here will have come into contact with children with such difficulties. Does he agree—he touched on this point—that more psychological help is needed for the parents, especially when the children are approaching the time of death? It is a very difficult time. There need to be very quick results. Help is needed for the parents as well.
Stuart Andrew
I absolutely agree. During the time I spent in the hospice movement, I learnt that those final few weeks are incredibly distressing. None of us can possibly imagine what it is like unless we have been through it. The support for the parents and the wider family is what makes much of what happens in the children’s hospice movement such a success.
The care must be age appropriate—suitable for a child’s particular stage of development—and administered by people who have the exact skills needed to get the person through their care pathway. A comprehensive local children’s palliative care service spans health, social care and education. Joint commissioning is vital and should be accessible 24/7, 365 days a year, from diagnosis to bereavement. As a result of the complexity and severity of patients’ needs, the transition from children or youth services to adult services can be particularly daunting.
Mr Robin Walker (Worcester) (Con)
I am grateful to my hon. Friend for securing the debate and for the well-informed points he makes. Is it not the case that improvements in medical technology mean that more children with life-limiting conditions are transitioning into adulthood? Therefore, we have a real duty of care to ensure—as Acorns Children’s Hospice in my constituency is doing—that we find the best pathways to support those people into adulthood and to give them the best chance of living a quality life with the time that they have.
Stuart Andrew
My hon. Friend is right. I saw great advances throughout my time in the hospice movement. When I first joined Hope House, the life expectancy of the children who suffered from Duchenne muscular dystrophy was usually no longer than 18 or 19. By the time I had finished my career in the hospice movement, some were living into their late 20s and possible even their early 30s. Transition is incredibly important for them, because often the style of care provided is geared more towards the older generation than to young people.
Transition is incredibly important and centres such as Martin House, which I worked for, understand that. It built Whitby Lodge, a dedicated unit for teenagers and young people, which has state-of-the-art equipment designed to enable social interaction through things such as a mini nightclub—something that we all take for granted. As well as caring for children and young people in the hospices, members of the care team supported the family in their home. Even after a child has died, help is provided in the form of bereavement care for family members.
Transitioning to other services can sometimes present real difficulties. From dealing with new agencies and professionals, to transitioning to a completely different plan, the result can create quite severe gaps in service provision. The impact is, frankly, quite shocking, with 36% of families breaking down, 64% of mothers and 24% of fathers having to give up work entirely, and nearly 70% of siblings being bullied or feeling isolated at school.
All that can create a cocktail of problems that leads families into poverty. Therefore, at all times, it is vital that locally available, community-led children’s palliative care is at the heart of the service provision. These kinds of services are, thankfully, easier to find than they once were due to local offers and organisations such as Together for Short Lives, which provide directories of available services. That is just one example of how provision has changed since I began working in the hospice movement.
I will never forget seeing families, drained and exhausted, arriving straight from work or school on a Friday, the colour drained from their faces with no fight in them, dragging bulky equipment around in their car, when all they wanted to do was what we all like to do—go out for a simple meal on a Friday night. Great palliative care allows those families to have short respite breaks, the importance of which really cannot be overstated, because it provides support to everyone in the family. With the number of children and young people with life-shortening conditions increasing, it is becoming harder for the Government, the NHS and local councils to budget enough to meet those families’ needs, given that the number of people with such conditions is not being monitored, as the hon. Member for Torfaen (Nick Thomas-Symonds) mentioned. The complex care that such families need from multiple agencies and professionals is not joined up enough, and families have to fight with their last ounce of strength to get the services they need. I therefore ask my right hon. Friend the Minister what can be done to ensure that the number and needs of children and young people with life-shortening conditions are more accurately monitored.
Funding for voluntary sector providers of children’s palliative care is not being provided fairly or sustainably. It is limited to medical elements of care and does not include crucial non-clinical elements such as short breaks and bereavement support. Together for Short Lives expects to publish soon the results of a series of freedom of information requests it has made to clinical commissioning groups and local authorities. Those results will show the extent to which different elements of care are being commissioned, and I hope that colleagues from across the country will use those data to see how their own constituents’ care is performing.
Before that, I ask the Minister whether he can set long-term plans for funding children’s palliative care fairly, sustainably and in a way that reflects the growing demand for such services. Additionally, will he work with his colleagues to write to CCGs and local authorities to make it clear what their responsibilities are in commissioning palliative care? Local authorities have a duty to provide short breaks for disabled children. However, they are cutting funding for short breaks at a time when demand from seriously ill children is increasing. The Government and local authorities, of course, face a difficult situation in balancing budgets, and I fully understand the need for that to happen, but at the spending review the Government gave councils the ability to raise more money for adult social care through council tax. Children’s social care was left out and I struggle to understand why, so I would appreciate it if he expanded on that. Additionally, will he hold local authorities to greater account for the money they spend on short breaks for disabled children and ask them what action they are taking to secure access to such breaks?
As I have mentioned, without access to specialist adapted vehicles, which many families need and many of which I saw, families are unable to transport their seriously ill babies and young children to and from hospital. That often traps those babies and young children at home or in a hospital bed, preventing them from enjoying the things that we all take for granted. Children under three with life-shortening conditions are not currently eligible for the mobility component of disability living allowance, so will the Minister work with his colleagues in the Department for Work and Pensions to change the eligibility criteria so that nought to three-year-old children with life-shortening conditions, whose lives will end without heavy and bulky medical equipment, can have access to such important vehicles?
Mr Gregory Campbell (East Londonderry) (DUP)
Does the hon. Gentleman agree that that single gesture would do more to transform the lives of many families than all the recommendations and assurances that we all want to give those families?
Stuart Andrew
I certainly agree. As I mentioned earlier, it was staggering to see the smallest child come with so much equipment to keep them alive. Larger vehicles enable such families to do the things that every family likes to do, for example to go out for the day. The lack of such a vehicle often creates more isolation for the siblings I mentioned a moment ago.
Mark Durkan (Foyle) (SDLP)
Further to that point, does the hon. Gentleman agree that, given the sensitivity of the issue, as he has laid out so well, it is terrible that the basic message to those families who have a child with a life-shortening illness is that the reason they cannot get that support is that the child is not old enough? That is a perverse message for those families.
Stuart Andrew
I take that point entirely. In this debate I want the issue to be considered carefully, because it seems perverse for a child to be too young to get the support they really need.
Medical advances thankfully mean that more young people with life-shortening conditions are living into adulthood. That should of course be celebrated but, as I have said, the transition from children’s services to adult services can be daunting and is often not joined up. There is currently a distinct lack of age-appropriate and developmentally appropriate palliative care services to meet the growing demand, so again I ask the Minister whether he will look into providing seed funding to voluntary sector organisations so that they can set up age-appropriate services for young people transitioning from children’s services to adult services.
I end by paying tribute to all the organisations, including Together for Short Lives, and all the people who were involved with Children’s Hospice Week a couple of weeks ago. Those dedicated people are really quite superb. I could never have done my job at Martin House or at Hope House without their tremendous effort. Their reputation helped us to raise the money we needed, and we should all pay tribute to the tremendous work they do. I hope that today’s debate will mean that we can all work together so that things can change for those 49,000 children and young people who are battling with the most difficult issues that we could possibly imagine.
Several hon. Members rose—
Andrew Percy (in the Chair)
Five people wish to speak, which works out at about 8.6 minutes each—not that I have used my calculator. This is an important debate, and it is important to get everyone in before I call the first of the Front Benchers at half-past 10.
Jim Shannon (Strangford) (DUP)
It is a pleasure to speak in this debate. I congratulate the hon. Member for Pudsey (Stuart Andrew) on clearly outlining the case and how we all feel about this important subject. I apologise in advance for not being here to hear the shadow Minister and the Minister—I have apologised to them both. I have to attend the Select Committee on Defence, otherwise I would look forward to hearing what they have to say.
This issue is important to me, as it is to the hon. Member for Pudsey and others in the Chamber, which is why we are here. We are here to represent our people and their viewpoints on issues that they want to be debated. There are Members here with personal stories, some of which we have heard before, and I look forward to hearing some of those stories again.
Life-shortening conditions are those for which there is no reasonable hope of cure and from which children are expected to die, or for which curative treatment may be feasible but can fail. Children with life-shortening conditions need continuing palliative care throughout the trajectory of their illness. As I always do in Westminster Hall and in the House, I will give a Northern Ireland perspective. The Minister knows that health is a devolved matter in Northern Ireland, and I will therefore add to the debate and the knowledge we all have by addressing some of the positive things we are doing in Northern Ireland. By sharing knowledge from across the United Kingdom of Great Britain and Northern Ireland we have an opportunity to enhance and enrich our lives and to help ourselves to do things.
In Northern Ireland alone there are currently estimated to be some 1,300 children and young people living with life-shortening conditions. Many of those children have extremely complex and unpredictable conditions, and they are under the pressure of requiring round-the-clock care seven days a week. Due to medical advances and improved care, that prevalence is growing and more of those children are living into adulthood.
The hon. Member for Pudsey and my hon. Friend the Member for Upper Bann (David Simpson) referred to families and how important it is for children under pressure and in need of medical assistance to have family support. It is about their parents, their siblings, their grandparents, their family circle and their friends coming together to give support and help at the right time. Because the proportion of young people and children in the Province with life-shortening conditions is less than 1%, people might be inclined to believe that they are an underfunded and perhaps neglected section of the population, but fortunately they would be wrong. More can always be done, but in Northern Ireland the work to support young people and children affected by life-shortening conditions has been positive and is ongoing.
Health may be a devolved matter, and this debate may be most pertinent to NHS England, but such conditions affect British children across the whole United Kingdom of Great Britain and Northern Ireland, and it is therefore important to make such points. It is important to link the work of Government institutions across the United Kingdom to determine what is best practice and what is not, and to share ideas on the way forward. Hopefully this debate will give us an opportunity to do just that.
David Simpson
We have discussed palliative care. Does my hon. Friend agree that it is important that complete, wrap-around palliative care is given to those affected? What happens to children with life-shortening illnesses post-19 has been an issue across the whole United Kingdom for far too long, and we need to address it.
Jim Shannon
My hon. Friend has hit on the kernel of the issue.
We need to exchange medical advances among all regions of the United Kingdom. We want to ensure that we in Northern Ireland have information about what is happening in London, Scotland, Cardiff or wherever it may be. I also want to put on the record my thanks to all the doctors, nurses and consultants involved, and to all the other people who genuinely, consistently, honestly and energetically give their time for the children affected. I have some constituents who have attended Great Ormond Street children’s hospital, not only for life-threatening conditions but for life-changing ones, and we thank everyone for what they do.
Mr Robin Walker
May I add to that list hospital chaplains, who play an important role in supporting bereaved relatives of all religions and of none?
Jim Shannon
That is absolutely right. It is so important in a time of physical, emotional and spiritual need.
Although it is critical for the Government to provide appropriate support, non-profit organisations and charities are often the most innovative and forward-thinking, because they are made up of people who are motivated and dedicated to making a difference. The Government need to resource those people properly so that their efforts can bear fruit and those affected by their work can receive the benefits of such support.
The hon. Member for Pudsey referred to the changes in disability living allowance. I will not repeat his words, but I wholeheartedly support what he said. How important it would be if we had a realistic disability living allowance system in place for those from nought to three, as well as from three onwards. It would only be a small change. The Minister knows that I respect him greatly—he is responsible and positive, and others want to hear from him today—and I say respectfully to him that he could use his position to make that change. It would make a hands-on difference, as my colleague the hon. Member for Foyle (Mark Durkan) said earlier.
Northern Ireland Children’s Hospice and Together for Short Lives are just two of the many organisations that make a difference in Northern Ireland. I commend them for their efforts not only to provide support for young people and children with life-shortening conditions but to research and produce realistic and helpful ways forward. They make a positive contribution.
I will quote testimony from an anonymous parent who went through palliative care for their young child in Northern Ireland. It sheds some light on what the experience can be like for normal, everyday people in the unfortunate position of having to live through such circumstances:
“Having had a child born with very complex needs, we found ourselves in the horrendous position of spending the first and last seven months of our child’s life in a neonatal unit and children’s ward. Our daughter was only able to come home for two separate days during this period. This involved ambulance transportation and two nurses. The process of getting her home for good was so complex and arduous it could not be completed before she died. Although hospital staff were brilliant, a busy general ward is not appropriate for end of life care.”
That puts things into perspective and reminds us that we are dealing with real people’s lives in this House. What we do and say has an impact on people across the country.
The same charities that I mentioned earlier have published a set of recommendations for the Northern Ireland Assembly—it has responsibility for the issue, and the Minister has recently changed—that will, in their view, transform the lives of children and young people with life-shortening conditions. Among the seven recommendations are calls for a dedicated children’s palliative care consultant in Northern Ireland, improved access to multidisciplinary services for children who need palliative care and high-quality planning to support young people as they transition to adult services. Although we are doing those three things in Northern Ireland, if they were in place here on the mainland as well, it would be a step in the right direction to improve things.
Critically, the recommendations also call for a fully funded children’s palliative care strategy for Northern Ireland, which would address many of the core gaps and provide a framework for appropriate and consistent children’s palliative care services for every family who needs them in Northern Ireland in the future. In Northern Ireland at present, a growing number of doctors, paediatricians and GPs are interested in children’s palliative care and are gaining vital knowledge and experience every day. However, the number of senior paediatricians with the necessary qualifications to be considered expert remains in the single figures.
The recommendation for Northern Ireland—again, I hope it will happen on the mainland as well—is to have a regional consultant. That is vital, but just one consultant for Northern Ireland would not be enough. A better option would be to have two part-time consultants who could overlap in looking after patients. It would mean that someone would always be available, 52 weeks of the year.
Mr Percy, I realise that I have overstepped my time, and I apologise. I will end with these two paragraphs. We know all too well that the purse strings have been tightened, but those are just a few of the ideas put forward by people working on the front line. They are the ones who know best, the ones closest to the reality of palliative care for young people and the ones who must live and work with the medical and financial implications of Government policy. They are the ones we need to listen to if we wish to make the difference that I think everyone in this Chamber, this House and across the whole United Kingdom of Great Britain and Northern Ireland wants.
No child should have to suffer as a result of being diagnosed with a condition through no fault of their own, and no family should have to live through such suffering. We are in a position to make a difference. If national Government liaise constantly with charities and those affected, surely progress is possible.
Rebecca Harris (Castle Point) (Con)
I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on instigating this debate. Life-shortening illness is an issue that many hon. Friends will have experience of from their surgeries; it is invariably moving and humbling.
I felt driven to speak in this debate because of a constituent of mine, a truly inspirational young woman called Lucy Watts. Lucy is 22 and suffers from a rare genetic condition called Ehlers-Danlos syndrome—I hope that I have pronounced it correctly—with life-limiting complications. It has left her disabled and wheelchair-bound since she was 14. She is hooked up to intravenous drips almost 24 hours a day and is largely bed-bound.
Nevertheless, Lucy does not allow her illness to rule her. She is a writer, a speaker, a charity ambassador and trustee, a blogger, a patient-leader and a spokesperson. She has appeared in filmed and recorded work, including on TV and the radio, campaigning for young people with life-limiting disease. Lucy was awarded an MBE by Her Majesty in the new year honours list—all this at 22, and with a life-shortening illness. Those are achievements that many of us could not hope to realise in an entire lifetime. I am immensely proud of Lucy, and I urge hon. Members to take time to visit her amazing website, “Lucy’s Light”.
As chair of the all-party parliamentary group on brain tumours, I know too well the dreadful impact of severe illness on younger people and their loved ones, as brain tumours are the largest cancer killer of children and young people under 40. Only a few weeks ago, we had a debate in this Chamber highlighting the impact of brain tumours and the fact that they receive only about 2% of research spending, despite their effect on reducing lifespans.
Through Lucy, I have also been introduced to the work of the charity Together for Short Lives. As has been said, the charity does incredible work with young people such as Lucy who are diagnosed with life-threatening illnesses. Unfortunately, but understandably, our society often feels uncomfortable discussing sick and dying children. Of course it is uncomfortable; as a mother, I can think of no greater horror. We would like to brush it aside and not focus on it, but we cannot afford to ignore the topic. My parents lost an older brother of mine, so I know some of the impact of being with and losing a sick child. It lasts a lifetime, and it affects the whole family.
Lucy has been keen to make it clear to me that young people desperately need care packages that bring together all three services—health, social care and education—in an age-appropriate way. I am glad to see that we are making some steps towards reforming the health and social care mix in this country, but much more needs to be done, and much faster.
A recent study suggests that the figure of 49,000 children and young people across the UK with life-shortening conditions could be underestimated by as much as 50%. The current population is not being adequately recognised, supported and funded by local authorities and clinical commissioning groups. The research suggests that a further 25,000 children and young people are effectively being ignored. In addition, that is reflected in the policy environment, where too often children’s palliative care needs are inappropriately coupled with those of adults. Children’s needs are much more complex, and must focus on quality of life as well as quality of death.
As we know, two weeks ago it was Hospice Care Week. Hospices are lifelines for families such as the Watts family. The work of hospices, such as Little Havens hospice in Daws Heath in my constituency, is invaluable for those who need support and advice. However, as Lucy has found, a children’s hospice such as Little Havens is not geared up to support a young adult and nor is the local adult hospice, meaning that Lucy is forced to travel from Essex as far as Winchester, despite the complications and difficulties of her illness, to access age-appropriate hospice care. That cannot be right.
I am proud that the Conservative-led Government ensured that there was a £60 million boost for hospice care and I hope that hospice care will continue to receive the vital funding it requires. As I have said, hospices really are a lifeline for families during the most heart-breaking of times. However, we must do more to support hospices such as Little Havens. The cost of palliative care for children is estimated to be £200 million a year, yet the grant for these services is just £11 million a year.
We owe it to Lucy and to thousands of other young people in similar situations to face up to the issue and not only see that that grant is increased, but ensure that research funding is directed more towards the illnesses that impact on the young and that take away the greatest number of years from young people’s lives. Too often we see research funding and care funding being focused on the most common illnesses, which are often less complex and have fewer implications for life expectancy. We have not got our focus right in this area and we need to adjust it.
It is very encouraging to see so many hon. Members here in Westminster Hall today and I look forward to working with the Government to ensure that we provide much more age-appropriate care for young people with complicated illnesses.
Angela Crawley (Lanark and Hamilton East) (SNP)
It is a pleasure to serve under your chairmanship, Mr Percy, in your new appointment.
I congratulate the hon. Member for Pudsey (Stuart Andrew) on securing this debate and I apologise in advance that I may need to leave a little bit early to attend the Women and Equalities Committee.
The provision of support for children whose lives are shortened by illness is a difficult issue to discuss. No parent wants to think that their child will not reach full adulthood or that they will spend their whole life being ill. However, that is the reality for too many parents. Therefore, we must do all we can to support families with sick children, to allow them to make the most of their time together.
My own experience of this issue comes from supporting many families with a loved one who experienced a short life. Through the young carers service, I volunteered to support the families of children living short lives, including their siblings. Those families were brave and inspiring, triumphing over what was probably the saddest time of their lives. Those siblings overcame those periods and went on to be incredible young adults themselves.
I echo the sentiments of the hon. Member for Strangford (Jim Shannon), who thanked the medical professionals and practitioners, the organisations and the charities, in this area. They provide constant support and care throughout this sad experience and, in many cases, afterwards, as the families go through the bereavement process.
As we have already heard, the charity Together for Short Lives has estimated that 49,000 children and young people in the UK have life-shortening conditions. However, the charity itself admits that that number could fall short of the true number of children affected by these conditions. I echo the sentiments of the hon. Member for Torfaen (Nick Thomas-Symonds); he is no longer in his place, but he discussed the need for robust data collection to ensure that the support necessary for families is available and that we quantify that support in an adequate way. Although I recognise the challenges that all Governments face, for someone to have to explain to a family that they simply cannot support them in their time of need because of a funding issue is not sufficient; indeed, for those families, it is simply not good enough.
Investment in research is absolutely crucial to medical advancement, and it can also increase the life chances of many children and improve the experience of many families. The reality is that Governments, the NHS and local authorities are currently unable to budget sufficiently to ensure that there is enough money to meet the needs of these children because there is simply an unknown number of them. As I say, that goes back to the point made earlier about the need for correct data to ensure that adequate funds are provided. I put it to the Minister that this situation must be rectified so that we can adequately respond to the demand to close gaps in services and ensure that there is welfare provision for children in palliative care.
Funding is vital. Surveys have revealed that 89% of children’s hospices could be forced to reduce their services if their funding from Government was stopped, so I urge the Minister to consider the best way to support those valuable services, to ensure that there is continued funding for them; I hope that he will consider that issue.
The Scottish Government are committed to ensuring that people can access high-quality palliative care, regardless of their age, diagnosis, socioeconomic background or where they live. As part of that commitment, funding for children’s hospices has parity with that for adult hospices, and I hope that the UK Government will make the same commitment to provide such parity. The Scottish Government’s strategic framework encourages support and promotes the further development of holistic palliative care for those in the birth to 25 age group. I urge the UK Government to make the same commitment to children and young people across the UK.
I will touch briefly on the issue of welfare and the UK Government’s attitude to it. Many families who have children suffering from life-shortening illnesses will be hardest hit by the welfare reforms. At present, families with a disabled child in receipt of disability living allowance may be entitled to £60 per week. Under universal credit, that sum will be cut to £29 per week. In other words, the families of thousands of children will have their household budgets slashed at a time when they absolutely need such support.
Any parent of a child with a life-shortening illness wants to spend as much quality time as possible with their family. Instead, families affected by welfare changes will face substantial additional costs, as a result of having to pay for specialist aids and adaptations for their home, not to mention the additional visits to health services and the associated travel costs.
For many of the families across the UK who are caring for sick children, one of the greatest challenges that they face is accessing appropriate transport. We have already heard how vital it is that the Government consider the impact of their policy and ensure that mobility aid for families of children under the age of three is also in place, because we simply cannot discriminate on the basis of age. Those families need that vital support, but children under the age of three who have life-shortening conditions are currently ineligible to receive it. I hope that the Government will reconsider that.
A growing number of children within that age range require extra medical care, including palliative care. Some babies and their families have permanent wheelchairs and are unable to use them, or specialist buggies, without the necessary transport provision. Without specialist adapted vehicles, those families are unable to transport their young children to and from hospital, which obviously disrupts family life. It also means that families will miss out on making valued—in fact, cherished—memories with their children.
In closing, I must highlight that the burden of providing care for sick children can push families into poverty. In Scotland, and indeed in my constituency, 25% of children and young people with life-shortening illnesses live in the areas of highest deprivation. Providing equal access to sources of support is of paramount importance, to ensure that those children get the most out of their short lives. Helping them to achieve that is dependent on our giving as much support to their families as is required, so I urge the Government to take all measures necessary to provide that support as much as they can.
Antoinette Sandbach (Eddisbury) (Con)
I am very grateful to my hon. Friend the Member for Pudsey (Stuart Andrew) for securing this debate, which, as Members know, is on an issue that I feel very strongly about. It was heartening to hear about the work of the Hope House hospice that serves my constituents, although it is based over the border in Shropshire, and about the work of Claire House, which is a very effective children’s hospice on the Wirral.
Other hon. Members have spoken powerfully about the transport issues and the transition issues, so I will concentrate on the families and the role that they play. It is particularly important to do so this week because it is Carers Week, and we know the vital role that parents play.
My hon. Friend made an important point about the 2% funding that was mentioned in the Chancellor’s Budget and the fact that that funding is limited to adult social care. There is no justifiable reason for that discrimination. It is clear that local councils have cut their funding for services, particularly for short breaks. The impact of that on families is devastating. Thirty-six per cent. of families with children who have life-limiting conditions experience family breakdown. Therefore, it is vital that the Minister recognises that cuts by local authorities to the funding for those short breaks lead to increased burdens on Government elsewhere and that it is short-sighted not to fund those short breaks, which give the families and the siblings the vital respite that is often needed to ensure that they stay together as a cohesive unit and get the break from some quite onerous caring responsibilities. I do not say that in a negative way. All the parents absolutely love their children and want to give them the best they can in the short lives they have, but they need that break and the time for themselves.
Stuart Andrew
I am grateful to my hon. Friend for making that important point and I would like to give an example. I always remember speaking to a father at the hospice who said that if he got up eight times in the night he considered that a good night’s sleep. Does that not highlight just how important it is that the families get the respite that they need?
Antoinette Sandbach
It is absolutely critical. I have experienced the situation in which, because of advances in medical science, the doctors cannot say whether someone will fall on one side or the other of the line of likely life expectancy—fewer or more than 25 years—and they do not qualify for support from the voluntary sector. Hospices play such an important role in supporting families and I give credit to the Government for funding children’s hospices, albeit not at the same level as adult hospice care.
There is, however, a cross-border issue, which Claire House neatly exemplifies. The hospice treats a number of Welsh patients—it will not turn children away—but it does not get funded for any of the treatment it gives to them. I urge the Minister to consider having National Institute for Health and Care Excellence clinical guidance that would apply nationally and help to iron out some of the wrinkles, perhaps taking some of the best practice in the devolved nations. We have heard powerful contributions about some of the efforts being made in Northern Ireland. There is some learning that can be gained from across the devolved nations, but guidelines would ensure that hospices were put on a sustainable footing.
On that point, I support the call for joint commissioning and ask the Minister to consider what happens after the death of a child. I am here partly in my capacity as the chair of the all-party group on baby loss, and the subject has been debated elsewhere. There is important counselling support that could be put in place before the loss of a child and, indeed, afterwards. Hope House, for example, has a dedicated counselling centre and I am delighted that recently—in fact, just this week— I got confirmation from the Treasury that the Alder Centre could apply for LIBOR funding. The centre provides vital bereavement support for families in the north-west and I very much hope that it puts in an application before August. That is a beacon of light perhaps in the north-west and in the debate.
Caroline Ansell (Eastbourne) (Con)
I wanted to pick up on my hon. Friend’s extremely well-made point about sustainable funding. Chestnut Tree House in east Sussex provides the most extraordinary care for children and young people with life-shortening conditions but, despite the huge merit of its work, it has only 7% Government funding, and it is not confident about securing even that, year on year. The local efforts are magnificent. For example, just last month, 700 women walked the seafront in Eastbourne and raised more than £70,000, but that equates to just 11 days of care at that extraordinary place. The hospice wants to increase its services—it is not looking to retract any. It says that there are many more families it can support.
Antoinette Sandbach
That is typical of the hospice movement. St Luke’s hospice, which provides adult care in my constituency, is looking to expand its services, and hospices such as Hope House and Claire House are also happy to do so. I know that the Minister has a new per-patient funding currency for children’s palliative care, which will come in next April, but in the meantime hospices need certainty of funding so that they can commission services. I urge the Minister to impose some requirements on clinical commissioning groups, to ensure that there is not that cliff edge that has been spoken about today and that we have joined-up provision from, literally, the cradle to the grave, with support afterwards for families who need it.
Jason McCartney (Colne Valley) (Con)
It is a pleasure to serve under your chairmanship, Mr Percy. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) not only on securing the important debate but on his work for and support of Martin House hospice in west Yorkshire. As he knows, our part of the world in Yorkshire is very well served indeed. I have the Forget Me Not children’s hospice in Huddersfield supporting 185 local children and their families. We have identified, however, that there are probably more than 1,300 who need our support. The hospice has been up and running for only about three years, under the inspirational leadership of Peter Branson.
As we have heard, funding is an important issue and a big challenge for our children’s hospices. The Forget Me Not children’s hospice needs to raise £3.8 million every year, with only 6% of that coming from Government funding. It was nice to hear about the wonderful fundraising efforts for the local hospice of my hon. Friend the Member for Eastbourne (Caroline Ansell). A couple of weeks ago, more than 1,000 people took part in a colour run. They raised thousands of pounds for the Forget Me Not children’s hospice by running through the beautiful fields of west Yorkshire and having coloured paint thrown at them. I have done my bit for the hospice by running the London marathon twice, but I would probably rather have paint thrown at me than run around the streets of London for four and a half hours—actually, 4 hours 44 minutes.
Some important issues have been highlighted this morning, and having been out with the wonderful nursing team from the Forget Me Not children’s hospice the one thing that has really struck me—we have talked about this—is the importance of respite care and short breaks for families. I remember visiting a single mum whose young daughter with muscular dystrophy had a breathing tube. I asked the mum what it was like caring for her daughter and we talked about the lack of sleep. She had not had more than two and a half hours of unbroken sleep at night for four years. I could see the tiredness in her eyes, but she was incredibly uplifting and made no complaint whatsoever. She was very inspirational; I think about her a lot. The nursing team would visit her twice a week, not only to care for the daughter but to give the mum an opportunity to have her hair done, go shopping for herself or have a coffee with friends. That was important to her, as a mum and as a person, and it helped her to give even better care to her daughter. I say to the Minister that finding an opportunity for short breaks and respite care is so important.
We have mentioned the funding element, and I have talked about the Forget Me Not children’s hospice, but we also need to think about the workforce and the specialist skills the hospice teams need to provide palliative care. We must ensure that we have a sustainable workforce, with specialist skills, experience, knowledge and competence, so that the wonderful children’s hospices can continue to give wonderful care, not only to children but to their families.
I finish by thanking all my colleagues here for making their wonderful contributions. I again thank my hon. Friend the Member for Pudsey (Stuart Andrew) for raising the issue and securing the debate.
Kirsty Blackman (Aberdeen North) (SNP)
It is an honour to serve under your chairmanship, Mr Percy. I am pleased that the hon. Member for Pudsey (Stuart Andrew) has brought the debate to the House. I raised the matter at business questions during Children’s Hospice Week, and I am glad to have the opportunity to speak in a debate about it.
There have been many interesting contributions today, and I am pleased that so many people have taken so much time not just to research the matter but to go and meet people, hear their real-life stories and bring them to the House. That is really important; it is not just about numbers, it is about the impact on people’s lives, and the debate has been good at highlighting that.
I thank Together for Short Lives, which prepared a briefing that many of us have seen, and the Aberdeen charity Charlie House, which has provided me with a lot of information in advance of the debate so that I can speak on behalf of families. It is key that we get as much information as possible, including about real-life scenarios. In paediatric palliative care, we are pretty much having to make things up as we go along. That is not any kind of criticism of those who work incredibly hard and do a huge amount of research to try to make lives better, but it is a situation we have not been in before.
The Children’s Hospice Association Scotland produced a report in 2015 that explained that we are seeing an increase in the prevalence of children and young people with life-limiting conditions, which is projected to grow further. As a result, the situation throughout the UK and the world is uncharted territory. We cannot just say, “This is best practice” and lift it, because we are all having to find our way in this scenario. As a result, Governments throughout the UK—the devolved Governments and the Westminster Government—are not necessarily getting everything right, because this is a new scenario for all of us. The best way to ensure that we get this right and provide the best support is to listen and speak to the families and ask them about what they need and the hurdles they are facing.
When a family has a baby with such a condition, it is an unforeseen circumstance. They do not imagine that that child will not learn to sleep through the night, will not learn to crawl and walk and will not go through a weening process and begin to eat solid food. It is an unforeseen and unforeseeable situation. A lot of the conditions that such children have are totally unplanned for and could not have been predicted beforehand.
One thing that has been touched on, but not explored in a huge amount of detail, is the financial impact on families. My hon. Friend the Member for Lanark and Hamilton East (Angela Crawley) mentioned that 25% of families with children with life-limiting conditions live in the most deprived areas of our communities. Those families start from a position of not having a huge amount of money in the bank, and they are then faced with a situation in which more than 60% of mothers and more than 20% of fathers have to stop work. They require support from the Government, because it is impossible for them to survive otherwise.
Alison Thewliss (Glasgow Central) (SNP)
My hon. Friend is making an excellent case. I visited the Children’s Hospice Association Scotland, and it said that some of the families that it deals with are not even aware of the benefits they are entitled to and get support on that from CHAS. Could the Government do more to encourage people to take up the benefits they are entitled to for their children?
Kirsty Blackman
I absolutely agree; that is something that the Government could do better. Again, that is not just the Westminster Government; it is an issue for Governments across the UK. It is very difficult when a family is suddenly thrown into a situation where they have a child who requires an incredible amount of support. They are trying to find out about children’s hospices and medical support and trying to work out what condition their child has. They are trying to swim through all that while keeping the family financially afloat. If the Government have not been proactive in providing and signposting all that support, it is even more difficult for families already dealing with an incredibly difficult situation. As the hon. Member for Colne Valley (Jason McCartney) said, in a lot of cases they have to do it with next to no sleep. The situation is almost impossible, and it is incumbent on us to ensure that we do all we can to help those families.
I want to touch on a couple of other points that Members have mentioned. The hon. Member for Eddisbury (Antoinette Sandbach) mentioned the importance of families having a break and respite. I underline the point made earlier that children’s hospices are not like adult ones. They provide support from diagnosis, or from the time when it is realised that the child may not survive childhood. Some 75% of the support provided by children’s hospices is through short breaks. We cannot overstate the difference between adult hospices and children’s hospices. There is a requirement that the Government provide them with different levels of statutory support, because they are a totally different kettle of fish.
The children we are talking about have 24/7 care needs, as a number of Members have mentioned. The importance of respite care cannot be overstated. The hon. Lady and the hon. Member for Strangford (Jim Shannon) mentioned sharing the knowledge we have of best practice in the devolved nations and spreading what works. One problem we have in Scotland is the lack of children’s hospice care. We have only two children’s hospices in Scotland, and they have a total of about 15 beds. Families in my constituency have to do a 200-mile round trip to access a hospice, and that is on the weekends that work for the hospice, because there is such a big waiting list. I do not think that is appropriate. We need to work on that. In previous years and decades gone by, it was not necessarily so much of an issue, because there were fewer such children and families. It is now increasingly becoming an issue. That is why Charlie House in my constituency is working hard to get a hospice built in Aberdeen so that there is local access. As my hon. Friend the Member for Lanark and Hamilton East said, the Scottish Government are committed to trying to ensure that we have a geographic spread of services, as well as the spread of services needed for children with all the different conditions.
I appreciate the fact that we have had this debate so that we can discuss these matters, and I appreciate the feeling in the room about working together to try to find a way forward that helps everyone.
One point I will briefly mention, because it has been mentioned a number of times, is the issue of transport for those aged nought to three. That would be relatively easy for the Government to fix and would make a massive difference to the financial impact on families, particularly those who are struggling financially as it is. It would be a massive help.
Thank you, Mr Percy, for your chairmanship, and I once again thank the hon. Member for Pudsey for securing the debate.
Barbara Keeley (Worsley and Eccles South) (Lab)
It is a pleasure to speak with you in the Chair, Mr Percy. I also thank the hon. Member for Pudsey (Stuart Andrew) for securing this important debate, to which he has been able to bring considerable knowledge. I congratulate him on how he opened the debate. We have had many important contributions this morning from the hon. Members for Strangford (Jim Shannon), for Castle Point (Rebecca Harris), for Lanark and Hamilton East (Angela Crawley), for Eddisbury (Antoinette Sandbach) and for Colne Valley (Jason McCartney). We have also had some shorter contributions from my hon. Friend the Member for Torfaen (Nick Thomas-Symonds) and the hon. Members for East Londonderry (Mr Campbell), for Foyle (Mark Durkan), for Eastbourne (Caroline Ansell) and for Glasgow Central (Alison Thewliss).
Many of us have talked about the charity Together for Short Lives. We thank it for its input to the debate, which it has welcomed. It feels that discussion of children who are dying and the support they need is hindered by a public taboo. The palliative care needs of children can be coupled inappropriately with those of adults, when, as we have heard, their needs are much more complex and focused as much on quality of life as on quality of death.
A key point that has been made in this debate is that we do not have enough data to commission and fund appropriate services to support children with life-shortening illnesses and their families. The most recent estimate is that 49,000 children under the age of 19 are living with life-limiting or life-threatening conditions, although I understand that that is based on data from 2009-10. Without Government monitoring of changes in the data, there are real difficulties in providing the care and support needed by children, young people and their families. Local authorities and CCGs already find it challenging to commission and provide palliative care locally because relatively few children in any given area will need that care. Without more accurate data, it is harder to commission and provide the services needed. Cross-departmental collaboration and better co-ordination among organisations are also needed.
The issue with funding is clear. There are different funding streams from different Departments and from local organisations. As we have heard, a remarkable amount comes from fundraising. We have specialised children’s palliative care commissioning, general children’s palliative care commissioning and the commissioning of children’s social services. NHS England, CCGs and local authorities all have a part to play in funding palliative care services for children, but as we have heard it is often unclear who is responsible for funding different services. There is terrible uncertainty about the availability of future funding for services. Indeed, Together for Short Lives found that CCGs contribute just 10% on average to the cost of the care that children receive in hospices, compared with an average contribution of around 30% to the cost of care in adult hospices. As we have heard from the hon. Member for Eddisbury, the Department of Health is testing per-patient funding for children’s palliative care for commissioners to use in 2017, but I understand that is not going to be mandated, so there will be no obligation for clinical commissioning groups to adopt that level of funding. Will the Minister clarify how the Government plan to ensure that adequate funding will be provided in future for palliative care services for children?
We know that funding from local authorities for children’s social care has become even more stretched. Local authorities can of course raise additional funds for adult social care through the social care precept, but that does not apply to children’s services. We also know there has been a significant increase in the number of referrals to children’s social services since 2009. The Local Government Association has raised concerns that the 40% real-terms reduction in core Government funding over the previous Parliament and subsequent budget cuts have meant that local authority services are being reduced significantly. The 2014-15 budget figures show a reduction of 20% for spending on children’s centres and early-years services since 2010.
We have heard quite a bit about breaks. Although local authorities are required to provide short breaks for disabled children, the funding for this has decreased, which means families are receiving less support, despite having significant caring responsibilities. We have heard about the extent of the caring responsibilities for carers of children with life-limiting conditions. The Every Disabled Child Matters partnership found that 58% of local authorities had cut their short-breaks spending by an average of 15% between 2011 and 2015, with some councils cutting this funding by up to 26%. In carers week, the fact that family carers are receiving less support and fewer short breaks should be of real concern to us.
I do not often go to my iPad for notes, but I had a look at Lucy’s blog; what she says about her mother as her carer is important.
“In reality, it is all down to my mum. She phones person after person, arranges blood tests and appointments and sorts out all of my medication, one of which has to be couriered down from London every few months, and when I’m on intravenous antibiotics, she drives to the hospital to pick up the drugs and picks up the equipment from the district nurses. My mum does my TPN and medication every day, she administers IVs and takes blood from my hickman line, gives injections, dresses wounds, can catheterise me, mixes and prepares medication, and so much more; she can do things many nurses can’t do...She liaises between consultants and departments. She sorts out my prescription and collects medication. She deals with my personal budget and pays my carers. She’s my mum, nurse, carer, PA and best friend. It’s all down to her. She’s given up her life to keep me alive, not having a holiday or break in 6 years.”
She should be able to have a holiday and a break.
As has been said in this debate, we need to find a way to hold local authorities to account for the money to spend on short breaks for disabled children. I hope the Minister can tell us what action he will take to make sure that seriously ill or disabled children and their family carers can access short breaks.
In March 2015, the Health Committee published a report of its inquiry into palliative and end-of-life care. It called on the Government to ensure that future funding proposals fully recognise the importance of the voluntary sector. The report also called on the Government to set out how they intend to ensure the sustainable long-term funding that we have talked about in this debate. It is clear from the many contributions today that improvement is needed to ensure a sustainable funding settlement for children’s palliative care in future.
I want to touch briefly on the importance of social and community palliative care and support services. Hospices do a wonderful job, but children are not always in a hospice. The Rainbow Trust children’s charity supports more than 2,000 families across England whose children have a terminal or life-threatening illness. This includes families in my constituency. The trust supports 99 families in Greater Manchester, including nine families in Salford. The family support officer for the team in Greater Manchester says that the most common concern raised by parents is the reduction in the statutory hours of support they receive. Increasingly, families are reporting having the number of hours of support reduced with no alternative service offered. It is important that the support provided by charities such as the Rainbow Trust should not be seen as a substitute for inadequate statutory support. The Greater Manchester Rainbow Trust team works closely with the Diana nursing team in Salford to provide all-round support to children’s families at home and in hospital. Both services are vital.
Charities such as the Rainbow Trust provide an essential service to families outside a hospice setting, and we must make sure that those community palliative care services are supported. I can tell the Minister that the statistics are very impressive for a small charity. In 2014-15, the Rainbow Trust provided nearly 3,000 hours of sibling support, more than 10,000 hours of home support, 7,700 hours of hospital support and more than 1,000 hours of bereavement support. Members have referred to the importance of bereavement support, which is a key aspect of the issue. Sadly, the Rainbow Trust receives only 3% of the funding needed for all those services from statutory authorities. I hope the Government will recognise the value of community palliative care and support and how it can work alongside hospice care to provide families with the support they need from the moment a diagnosis is made.
Children’s services provide excellent care in an age-appropriate environment, but, as we have heard, young adults tend to have different needs from young children and older adults. As more children with life-shortening conditions live longer—we are all grateful that they do—they are more likely to make the transition into adult care settings. Unless suitable age-appropriate services are offered to help with this transition, young adults may be lost in the system. The hon. Member for Castle Point spoke of the impact on Lucy and the travel she had to do to find services. What will the Minister do to ensure that young adults making the transition to adult palliative care services have the support that they need?
As we have heard in this debate—like everyone else, I want to touch on this—changes in benefit eligibility could also help to ensure that families get the level of support they need. Most people would not think of the importance of the mobility component of the disability living allowance and perhaps not register that the fact that it does not apply to children under three was such an issue, but of course those children need special equipment such as ventilators or the permanent wheelchairs that we have heard about, and families need to transport that equipment. It is a dreadful thought that with precious and limited time for children and families to spend together, the families are unable to get out and are stuck at home because of equipment issues. Will the Minister raise with his colleagues at the Department for Work and Pensions the need to change the eligibility criteria of the DLA mobility component so that the families of children under three with life-shortening conditions can access it? It has been said that it is easy to fix: I hope that he thinks it is.
Many hospices, hospitals, social care providers and charities provide excellent care and support for children with life-limiting conditions and their families. I want to join others in this debate in thanking them for all that they do, but it is clear that more needs to be done to develop a sustainable funding system that can provide a fully integrated service for families at all stages of their child’s illness. The importance of those services for families with a child who has a life-limiting illness cannot be overestimated. We are talking about people who give up their lives to provide support, as Lucy’s mum has done. We are talking about parents who get very little sleep. We should really think that through during carers week. I hope the Minister will assure us that more will be done in future to make sure that every family with a child living with a life-limiting condition can access the support that they need when they need it.
The Minister for Community and Social Care (Alistair Burt)
It is a pleasure to serve under your chairmanship, Mr Percy. I am sure we have all found the debate that you have conducted enlightening, interesting and extremely collaborative. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing it. He has a long history of championing the children’s hospice sector as a fundraiser for Martin House and has been at the forefront of efforts in Parliament to publicise the needs of children with life-limiting conditions. I thank him for that, as others have done.
I apologise for the absence of the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison), in whose portfolio this subject normally sits. She is overcommitted and trying to be in two places at the one time, so I am delighted to have the chance to respond to the debate. In a lengthy and varied ministerial career I have had the pleasure most of the time of being in a position where I can work with the House rather than deal with confrontational situations. Occasionally politics intervenes, but most of the time I have had the opportunity to do what I am going to do this morning, and I appreciate the way in which the debate has been handled and dealt with.
I shall briefly pick out some of the points made in individual speeches. With his usual courtesy and kindness, the hon. Member for Strangford (Jim Shannon) told some personal stories and made an important point about sharing experience. He also helped us out with some information from Northern Ireland, as he so often does. My hon. Friend the Member for Castle Point (Rebecca Harris) spoke of the inspiration of people such as Lucy, whom I shall quote in a moment. She made several points about transition and the need for people to have a voice. The hon. Member for Lanark and Hamilton East (Angela Crawley) and others raised the issue of mobility, which I shall address in a moment.
My hon. Friend the Member for Eddisbury (Antoinette Sandbach) is very much involved in these issues, and I am pleased that she talked about carers during Carers Week. There is still time for carers who are listening to get involved in the call for evidence on the new carers strategy. On the back of this debate, some information from carers for those with children with life-shortening illnesses would be particularly welcome. If carers could submit their information—they have until the end of June—that would be great. My hon. Friend also spoke about the need for counselling and issues relating to the end of life.
My hon. Friend the Member for Colne Valley (Jason McCartney) gave us moving stories about lack of sleep and illustrated the sort of lives carers lead when looking after their children. That personal insight really brings it home, as do those of other colleagues. I appreciated the interventions made by my hon. Friend the Member for Eastbourne (Caroline Ansell) and other colleagues.
Of the two Front-Bench spokespersons, I know the hon. Member for Worsley and Eccles South (Barbara Keeley) well and, with her background in caring, her contributions are always to be listened to. She touched on several issues, including data and the funding of short breaks. I shall come to them all. I have not had the pleasure of listening to the hon. Member for Aberdeen North (Kirsty Blackman) before, as our portfolios have not crossed, but I really appreciated how she approached the subject, and particularly what she said about our being in uncharted territory. That is the truth.
A generation ago, the Minister in my position would probably not have been having this debate, or it would have been very different. Now, because of advances in medical science, we are working with children and families with whom we would not previously have been working. That gives rise to a whole series of new issues for all of us, and to a certain extent we are all feeling our way. The financial pressures are obvious, whatever the Government—whether it is devolved or in Westminster—but new work is being done all the time to tie up the different elements and agencies that handle packages of care. The hon. Member for Aberdeen North was particularly good on that, and I appreciated what she said. We can always learn from those around us.
I picked up in the debate issues such as data, social care, short breaks, mobility, transition and integration, about which I shall say a little in the course of my remarks. The hon. Member for Worsley and Eccles South read out a quote from Lucy, who has been mentioned several times, and the hon. Member for Aberdeen North mentioned the importance of listening, which is the bit I wanted to pick out from what Lucy said. I had experience of that many years ago as Minister with responsibility for disabled people, and it has come up again and again. I shall read from Lucy’s piece on the website of Together for Short Lives, which I commend for its work on this issue. I would be grateful if the House would take a moment to hear Lucy’s voice:
“All throughout my illness, and my life in general, the one thing I’ve always wanted is to be listened to. That is extremely important. I have very little control in my life, being dependent on others for almost everything. The only bit of control I have is my opinion and my ability to make decisions. I value this greatly. However, I am not in control over whether people listen to my opinion. My opinion or decision is only in my control if people listen to it and take it on board. It’s hard for some people to understand why I get so upset if someone makes a decision on my behalf without my consent and prior knowledge, but when it’s the only thing I have control over, you can understand why. Healthy people make decisions all the time and everyone has their own opinion. But when you’re sick and/or disabled, suddenly some people think it’s ok to make decisions for you, as if, somehow, being sick or disabled makes your opinion worthless or unnecessary. Others do it to be kind, but it still can be upsetting. I am perfectly capable of making my own decisions, and so I should be involved in all decisions that concern me or affect my life. My decision, no matter what it may be, should be supported. Be it what clothes I want to wear, where I want to go or even down to things like whether I want to be kept alive by machines or if I choose not to have life-prolonging treatment. However hard or important the decision, the individual should be listened to—even if you don’t agree with what they’re saying.”
That is a remarkable personal statement from an obviously remarkable young woman, to whom we have all paid tribute during the debate.
Turning to the main part of my speech, I shall start with some remarks about funding before using the generous time I have been allowed by tackling some of the individual issues that have come up. Some children and young people have very complex health needs, which may be the result of congenital conditions, long-term, life-limiting or life-threatening conditions, disability or the after-effects of serious illness or injury. The NHS and related services support such children in a range of ways, but the role of children’s hospices is crucial, and it is right that we focus on it today. I am grateful that so many individual hospices and organisations have been mentioned in the debate, not least by my hon. Friend the Member for Pudsey in his opening speech. I pay tribute to Keech hospice, which is based just outside my constituency on the outskirts of Luton. It covers Bedfordshire, Buckinghamshire and Hertfordshire, and I thank the staff there for the work they do.
I also thank St John’s hospice in Moggerhanger, a Sue Ryder organisation for which I have run a couple of marathons. My hon. Friend the Member for Colne Valley mentioned a time of four and a half hours; my time the other week was six hours. Obviously age is getting to me. I shall have to work on cutting down my time next time, but I did appreciate seeing the Sue Ryder cheering team on the Embankment about a mile away from the finish. A hug at that time of the day was most welcome. I thank all those who partake in fundraising efforts for children’s and adult hospices throughout the country. Those efforts cannot be overstated and are really appreciated.
As hon. Members will recall, the coalition Government initiated work to look at the basis on which palliative care services are commissioned for people of all ages. That work continued under this Government, reflecting the importance that we attach to these services. The aim of the work was to have a more transparent and local approach to commissioning services. Children’s hospices in particular have not always enjoyed a very close relationship with local health commissioners—neither primary care trusts nor clinical commissioning groups. That is largely a reflection of their history. They developed as voluntary sector organisations, driven by people’s time, good will and charitable donations.
Of course, many commissioners do support local children’s hospices and hospice-at-home services, and we have heard of some good relationships today, but there is variation in commissioners’ awareness of the valuable role of children’s hospices, and in the extent to which commissioners—both local authorities and CCGs—fund them. That has been usefully highlighted by research undertaken by Hospice UK and Together for Short Lives, as was mentioned earlier.
Children’s hospices are not just a vital resource for care and support to children with life-limiting conditions; there is also a clear role for hospices and hospice-at-home services in supporting families by providing respite care for children and young people with complex needs and disability. We want that to be encouraged as part of a more strategic approach to children’s health outcomes. We now have new statutory requirements in relation to children with special educational needs and disability that require CCGs and local authorities to work together. Such a model of integrated arrangements would provide a framework for wider support to children and young people with complex or life-limiting conditions, so it is an opportunity we should support.
In supporting more integrated arrangements for commissioning for children and young people, we want to emphasise the role of the hospice sector as a provider of respite care, and how such provision can dovetail with other specialised and universal services in a co-ordinated way. That can be supported through far greater transparency about the nature of care and its costs. As colleagues have mentioned, the coalition Government agreement pledged to introduce a new per-patient funding system for hospices by 2015 to cover care for adults and children, regardless of which organisation provides it. The aim was to have transparency about services and costs, which would allow local commissioning of palliative care.
The long process of data collection and costing—I will come back to data shortly—was a model of co-production with the sector. It identified considerable complexity in developing a new system that is sufficiently responsive to the varied needs of palliative care, particularly in the case of children’s hospices. It resulted in a draft palliative care currency, which is being used and tested locally, and the aim is to publish a final currency next year. As the hon. Member for Worsley and Eccles South said, it is not a mandatory payment system but a first attempt to group specialised palliative care into packages that are similar in the resources needed and, in particular, in workforce requirements. It does not attribute prices to the packages, as they are for local negotiation in the usual way as part of the commissioning process.
There are concerns that the currency approach does not reflect all the services provided by hospices and that a young person and their family might need, and that it perhaps lacks the flexibility that I mentioned. The currency is a useful basis for local discussions between providers and commissioners, but it is work in progress. It is clearly not the end point, although we have moved on from where we were.
NHS England recently convened a round table on children’s palliative care, which included representatives from the children’s hospice sector. It identified that the varied nature of children’s palliative care requires us to consider other funding models. NHS England and Public Health England recognise that a per-patient tariff—the principle behind the currencies for palliative care—may not be the only or the most suitable funding model for palliative care, particularly given the diverse range of the needs of children and young people with life-limiting conditions. NHS England will review with stakeholders a range of potential approaches to palliative care funding for children and young people, using the existing currencies as a basis for different models. My hon. Friend the Member for Pudsey will be glad to know that the children’s hospice sector will be part of that work. The aim is to identify the most practical approach to funding, which will allow strategic discussions between CCGs and providers and transparency about the care packages that are being secured.
I am glad to say that we are able to provide more direct support in the form of the £11 million grant that NHS England makes available to children’s hospices. The future of the central grant is a topic to which we return regularly. I appreciate that it is a source of uncertainty and frustration to children’s hospices that NHS England is not able to provide a long-term guarantee or a multi-year confirmation of the grant. We should recognise, however, that it is not dissimilar to other areas of health funding and that, in that respect, children’s hospices are no different from other providers of health services. NHS England itself does not have a long-term allocation, so it cannot in turn make long-term commitments about grant funding to children’s hospices. However, NHS England, on behalf of the Government, has made a clear, ongoing commitment to continue to support children’s hospices. There is no question of the abrupt cessation of that support if there is no sustainable local commissioning alternative in place. I know the children’s hospice sector will welcome local commissioning arrangements, and ultimately their success should mean an end to a rather unusual central grant, but the former must be in place before we can have the latter. My Department and NHS England are equally keen to ensure that the transitional process is smooth and that it is achieved by working closely with the sector.
There are a number of imaginative funding developments and ideas. My hon. Friend the Member for Winchester (Steve Brine), who was unable to take part in the debate, reminded me of a submission from Naomi House in his constituency. It talked about the very successful 30% contribution contract arrangements that exist across the south-west, including in Wiltshire, Dorset and Bournemouth and Poole. It stated that in many ways, the model in the south-west is a great example of Government policies in action, with services being funded by pooled budgets of health and social funds. It continued by saying that the system of a contribution, rather than full cost recovery, is an example of third sector and public bodies working together to achieve value for money and the delivery of quality services, which helps to avoid family breakdown and unnecessary admissions to hospital, leading to further savings.
I know a lot about data collection from my other portfolio—mental health services—because the Opposition spokesperson, the hon. Member for Liverpool, Wavertree (Luciana Berger), has made it a specialist subject on which she could speak on “Mastermind.” She has helped me to encourage the Department to do better on data collection. As I outlined, the NHS and the Government have been through a process to determine a new funding model, which has assisted in uncovering more of the necessary data. I am assured by my officials that further work will go on.
The identification by commissioners of children with a life-limiting condition is essential to ensure the efficacy of commissioning plans. There is also a need to ensure that professionals who are not usually in contact with children with life-limiting conditions, such as in primary care, are fully aware of the child’s needs. The Department is exploring the potential for a flag on general practice information technology systems to allow practitioners to note when a child or a young person has a life-limiting condition. More data collection is certainly on the cards. Effective conditioning has to start with effective identification. In 2014, the Department of Health issued guidance for health and wellbeing boards on children’s complex needs, which provides key insights on effective needs assessments. That work will continue.
On social care funding and short breaks, a question was asked about local authorities, council tax and the adult social care model. Local authorities have to make complex choices about how to target resources more effectively. With my adult social care hat on, I am well aware of the social care precept. The Department for Communities and Local Government is undertaking a comprehensive and thorough review to devise a new formula to assess councils’ needs and to provide fair funding for every type of local authority ahead of the introduction of 100% business rate retention by the end of this Parliament. There is clearly a lot of work to do over the coming months to work out the details of the new system. The DCLG will consult with local government more widely on the issue shortly. I encourage my hon. Friend the Member for Pudsey to make representations to the DCLG about funding children’s social care in the same way as the adult social care precept works. Perhaps he and other colleagues will take advantage of that review.
Since 2011, the Government have made it a statutory requirement for all local authorities to provide a variety of short break services. Regulations require them to publish a short breaks duty statement describing what short break services are on offer in their area and how they can be accessed. It must form part of the local offer of services for children and young people with special educational needs and disabilities. The Government contend that that transparency is really important. When asked about their implementation of special educational needs and disability reforms in February 2015, the vast majority of authorities reported that they were keeping their short break budgets the same as for 2014-15, but I am aware of the pressure that exists. The Under-Secretary of State for Health, my hon. Friend the Member for Battersea, will certainly review the debate, and I have heard what colleagues have said.
I will also draw my hon. Friend’s attention to the issue of mobility, which virtually every Member has mentioned. When I was the Minister responsible for disability some years ago, I was in charge of mobility, so I am well aware of the benefit and impact of mobility assistance. Concerns have been raised about the age limit, which is an issue for the Department for Work and Pensions. There was a meeting between Together for Short Lives and my noble Friend Lord Freud in February 2016. The response, which is on its way to Together for Short Lives, indicates that my noble Friend the Minister listened very carefully. It says that, if there is to be a change, it will involve primary legislation. That is perhaps not quite the short and simple answer that we all want, but he committed to ask his officials to explore whether there are other ways in which the Department can provide support. I will certainly report to my hon. Friend the Member for Battersea how important mobility is to those with very young children.
The Government provided £420,000 in grant funding to Together for Short Lives to help the transition taskforce look at how the transition between children’s and adult services can be eased. I know that is an important factor for many families and will be increasingly important in the future.
I hope I have covered all the issues that colleagues have raised. If there is anything that I have not covered, I will write to the colleagues who raised it. If it is something substantive, I will put a letter in the Library so that colleagues present in the debate can pick it up there. I am grateful to all Members who spoke and to the constituents who involved them in what they are doing. I again thank my hon. Friend the Member for Pudsey for raising this issue and colleagues for the way in which they have debated it. This is an important issue, and I hope the debate has reflected that.
Motion lapsed (Standing Order No. 10(6)).