Support for Life-shortening Conditions

Stuart Andrew Excerpts

Tuesday 7th June 2016 Westminster Hall

[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.

--- Later in debate ---

[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—]

--- Later in debate ---

[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.

Junior Doctors’ Contract Negotiations

Stuart Andrew Excerpts

Monday 8th February 2016 Commons Chamber

[Ben Gummer]

The hon. Lady is also an intelligent woman, so let me ask her this. If a trusted body, such as the BMA, tells its members that they will have a pay cut of 30% and an increase in hours, but that statement is incorrect, does it constitute a lie? That is the question I would put back to her.

[Stuart Andrew (Pudsey) (Con)]

A number of Members met representatives of the BMA in the House of Commons. We were disappointed that, despite continued questioning, they refused to go to the negotiating table, but thankfully they eventually did so, and made some progress. My constituents want a safe, seven-days-a week NHS. Is it not time to get back around the table, so that we can provide the service that NHS patients want?

[Ben Gummer]

It is, and that is why we need to move ahead in fairly short order. Ultimately, if staff contracts are not reformed across the service, those who will suffer most will be patients, and what will be most affected is the consistency of care that they receive at weekends.

Gay Conversion Therapies

Stuart Andrew Excerpts

Tuesday 3rd November 2015 Westminster Hall

[Mike Freer]

My hon. Friend makes a good point, given the evidence. I am about to quote the Royal College of Psychiatrists, which states that such therapies are damaging not only to the physical health, but to the mental health of individuals who have such therapies inflicted upon them.

[Stuart Andrew (Pudsey) (Con)]

I congratulate my hon. Friend on raising this important issue. Is he as disturbed as I am to see figures from the United States on people who have gone through conversion therapy showing that they are 8.9 times more likely to commit suicide, 5.9 times more likely to suffer depression and three times more likely to take illegal substances than their peers as a result of this frankly outdated and cruel method?

[Mike Freer]

My hon. Friend makes an extremely powerful point. I am not surprised to hear those figures.

Anyone who is conflicted and in need of support while coming to terms with their sexuality is experiencing some difficult feelings. If they are told that they can be cured—I am yet to find a case of the cure being proved successful—they then have to deal with those feelings as well.

Children’s Palliative Care

Stuart Andrew Excerpts

Tuesday 3rd March 2015 Westminster Hall

[Steve McCabe]

Yes, I agree. That is exactly the point. It is fantastic that so many children now survive for so much longer. That creates new demands and service needs that have to be considered. I should be grateful if the Minister said what work is being undertaken, both within Government and the NHS, to ensure that these transition issues are being considered in any new funding plans. I concur with the hon. Gentleman on that. The Care Quality Commission report, “From the pond into the sea: children’s transition to adult health services”—that is its title, I kid you not—also indicated that this focus is important.

We are moving towards the election, so it would help if the Minister clarified where we are with all these plans. As I have said, I acknowledge that the intention is to create a fair and sustainable framework, but we are now in March—the projected launch date for the introduction of the new non-mandatory currency is March—and as yet, unless I have missed something, we do not know the Government’s intention. What I would really like to know, and what I think the hospices would like to know, is what is going to happen with the hospice grant? Is the intention that it should continue during 2015-16 and beyond? I am sure that the Minister appreciates that not knowing is a real source of anxiety and a blow to any attempts at long-term planning.

Almost 96% of children’s hospice organisations are worried, according to the Together for Short Lives survey, that CCG funding will be less than their existing grant and harder to access. That grant covered about 13% of the care costs incurred by children’s hospices and existing clinical commissioning group funding represents about another 12%. Uncertainty over almost 25% of previously guaranteed funding is a difficult basis from which to operate.

I am sure the Minister knows that these bodies rely massively on public generosity and fund-raising efforts, but they also need some core guaranteed funding. If the grant ceases and is not matched by equal funding elsewhere, 89% of children’s hospice organisations could be forced to reduce their services. Areas at risk include short-break services for 60% of users.

[Stuart Andrew (Pudsey) (Con)]

As someone who has spent 14 years working for the children’s hospice movement as a fundraiser, I am completely aware of the point that the hon. Gentleman is making. Short breaks are incredibly important, because they are not only a break for the child, but for the whole family. Often people arrive on a Friday looking utterly exhausted. Just being able to have some normal family time until Monday is a great relief for them. Is that not the importance of these short breaks?

[Steve McCabe]

I do not think we can in any way overestimate the importance of short breaks to families and to children. Both need space at times, and the hon. Gentleman is absolutely right. The survey suggests that more than 60% of users could lose that service. There is also a risk of a 35% reduction in family support work, which is connected with short breaks and enables many families to keep going in stressful situations. There is also a risk of a 23% reduction in the amount of end-of-life care support provided.

Short breaks provide respite for carers and families and should be funded by local authorities and the NHS under their respective legal short-break duties. Despite being key providers of short breaks, a third of children’s hospices are not recognised by local authorities as being short-break providers. Some 42% of children’s hospice organisations receive no funding from local authorities. Page 56 of the palliative care funding review report states that

“pre-bereavement support is an absolutely essential part of palliative care and should be fully funded by the state.”

The review goes on to state, however, that far from being universal, only 65% to 70% of local authorities have open access services. Without the children’s hospice movement, there will be a gaping hole in end-of-life care.

I am not here to criticise the Government’s intentions, but the combination of the election and a new system with many unanswered questions risks significant funding problems. As organisations try to tighten their belts and take on new responsibilities, there is a danger that they will fall back on what they know or believe they know. It will not help the children or families of children with life-limiting conditions if clinical commissioning groups fall back on a narrow, clinical model that focuses on the child’s health needs as defined by doctors. The currency should not be used as a top-up for the acute sector providers, who can access other tariffs to fund care for children with life-limiting conditions.

Palliative care for children with a life-limiting or life-threatening condition is an active and total approach to care, from the point of recognition or diagnosis through the child’s life to death. It embraces emotional, social and spiritual elements and focuses on enhancing quality of life. It also supports the family and includes managing distressing symptoms, providing short breaks and care right through to the point of death and bereavement. That more holistic understanding of palliative care is reflected in national policy documents such as NHS England’s “Actions for End of Life Care: 2014-16” and the 2014 Care Quality Commission handbook. I welcome the interest that the Government have shown in an often neglected area, but we now need some clear messages, actions and signals to ensure that valuable work is not wasted and that an easily avoidable funding crisis is not allowed to develop. Local authorities under significant financial pressures are highly unlikely to fund what they might see as additional services unless required to do so. NHS England’s draft currency for children’s palliative care should be accompanied by clear guidance to local authorities on funding short breaks and bereavement care.

I would like the Minister to give an assurance that the structure is clear and that the intention is to have a three-source funding arrangement, with NHS England commissioning specialised children’s palliative care and utilising the experience of the children’s hospice movement, with CCGs commissioning general children’s palliative care using the new per-patient funding system and working closely with children’s hospices and with local authorities required to commission social elements of palliative care, such as short breaks, bereavement care and support for siblings and other family members, and seeing it as their duty to work with children’s hospices. It is vital that all three funding sources complement one another. If not, there is a risk that local authorities will regard those services included within per-patient funding as the entirety of palliative care and avoid playing their part. NHS England’s specialised care could fall prey to a narrow medical model and never leave the acute hospitals.

The Government need to provide some specific distinctions between specialised and general palliative care, so that one side is not tempted to avoid its responsibilities by relying on the funding of the other. We also need to know that NHS and local authorities are clear about their duties under the Children and Families Act 2014. It places a duty on them to jointly commission care for children and young people with special educational needs and disabilities up to the age of 25. I urge the Minister to provide what answers he can today to a valuable sector, which eagerly awaits his response.

Surrogacy

Stuart Andrew Excerpts

Tuesday 14th October 2014 Westminster Hall

[Jessica Lee (Erewash) (Con)]

It is a great pleasure to speak in front of you during this important debate, Sir Edward. I am grateful for the opportunity to raise the matter in Westminster Hall today.

Of the many functions of Parliament, one of the most important is to respond to changes in society and, when appropriate, to legislate accordingly. The law on surrogacy is outdated, limited and in places illogical. It is difficult to see how the current law, such as it is, can be said to help people who are starting families without the process involving significant stress and risk. Although there is no small or completely straightforward change to alleviate such problems, the time has come for Parliament to take a fresh look at the rules around surrogacy and to commit to helping people to start a family. I have some experience and interest in the matter from my time as a family law barrister.

Surrogacy is on the increase. Despite a lack of official figures, save for what is recorded on the parental order register, it is estimated that between 1,000 and 2,000 children are born through surrogacy each year, which is up from between 50 and 100 in 2008. The numbers are rising sharply, which is why the time is right for Parliament to explore the solutions to help the families and surrogates involved in the process. To start with, it is worth considering why families or individuals turn to surrogacy. There are of course several reasons, including unexplained infertility, cancer, couples being of the same sex or, occasionally, individuals wanting a child. Whatever the reason, however, the current system has uncertainties throughout. Some commentators have described surrogacy as a legal and political minefield, which may be right, but Parliament’s role is to face up to such problems and to try to find solutions.

Not only are there problems with the law in this country, but an international framework for surrogacy, unlike adoption, is lacking. The rules in the UK are so ambiguous that potential parents are increasingly turning to other countries to find surrogates, which has its own problems. The lack of an international structure leads to delays and complications when they return to the UK with their children. The problems were highlighted over the summer with the case of baby Gammy, one of a set of twins born to a surrogate in Thailand for Australian parents. Gammy happens to have Down’s syndrome, and there is a dispute between the surrogate and the intended parents as to the reasons why he is now separated from his twin, who has gone to Australia. It cannot be right for such children to be left without a clear set of international rules to resolve the dispute.

The Minister may not be surprised to hear that I am not short of possible solutions to the issues around surrogacy and ask her to reply directly to my proposals. I am sure that she will agree that the current system has problems and those problems must be the starting point. With that in mind, I am sure that she will be grateful for the opportunity to work with me and others and across Government Departments to help families by seeking solutions that can reform the system.

In summary, I am calling for the following changes. First, I want new legislation to be brought forward to update the law or to amend the current legislation to help prospective parents and surrogates. Secondly, there should be written agreements for those going into surrogacy to ensure that all potential future issues around the pregnancy have been discussed and agreed. Thirdly, I want an international framework for surrogacy. Fourthly, there should be a code of practice for prospective parents and surrogates. Fifthly, we should have pre-birth orders, because it is right that there should be an immediate transfer of parenthood upon birth. Sixthly, payments to surrogates need to be regulated and transparent and should be for the surrogate’s “inconvenience” rather than for the acquisition of a child. Finally, we should end the non-extendable deadline of six months for applying for a parental order. I will discuss a related development that came in a recent judgment later, but it cannot be right to have no flexibility in a family law application of this nature.

The Surrogacy Arrangements Act 1985 and the Human Fertilisation and Embryology Act 1990 provide for the current legislative arrangements. The 1985 Act made it a criminal offence to advertise for a surrogate mother, to advertise oneself as a prospective surrogate or for third parties to broker a surrogacy arrangement on a commercial basis. The Act made the UK surrogacy arrangement unenforceable and the legislation was perhaps aimed to discourage surrogacy. The reality, however, was that surrogacy cases were beginning to rise in the UK and the legislation left the whole structure without professional support, which was reflected on by High Court judges at the time. In 2007, Mr Justice McFarlane commented:

“Given the importance of the issues involved when the life of a child is created in this manner, it questionable whether the role of facilitating surrogacy arrangements should be left to groups of well-meaning amateurs.”

He makes a good point.

The 1990 Act created for the first time a bespoke legal process enabling married intended parents to reassign legal parenthood to themselves and obtain a parental order. It was updated in 2008 and extended those eligible to apply for a parental order to include unmarried and same-sex couples. That, however, is it. That is our entire legal framework. The various pitfalls in the current legislation are many and I will now speak of how Parliament can best legislate to help all involved.

Enforceable written agreements and a code of practice would deal once and for all with the uncertainty surrounding surrogacy. There are an infinite number of questions to ask before going into a surrogacy arrangement. A written agreement and a code of practice would provide clarity for intended parents and for surrogates. All those involved need proper advice and proper safeguards against all eventualities. What if the pregnancy results in more than one baby? What about communication between all involved during the pregnancy? What if the child has a disability? What about the arrangements for the actual birth? Those are just a few of the obvious, practical problems that need to be addressed and could be addressed by written agreements.

I have been discussing the matter with other MPs and some of my constituents. Following a conversation with a couple in my constituency, I will put it like this: I would not expect my constituents—the good people of Erewash—to have to purchase a house or lease a car without a contract, so why when trying to form a family, which is the most important thing that they will ever do, with a surrogacy would they do so with an inadequate framework? It cannot be right, but it is within Parliament’s power to change the rules.

The next change I would like relates to pre-birth orders. It is important to establish legally who the parents are from the moment of birth. At the moment, the surrogate, and their spouse if they have one, are the legal parents of the child. It has been said to me over the past few days that there is always the risk that surrogates will change their mind and that it must happen all the time. It is a common misconception. To my knowledge, only two cases of surrogates seeking to keep their baby have been reported in the past 30 years compared with some 1,000 successful arrangements. Typically, surrogates are mothers who have found pregnancy easy and then want to help other families. They have a commitment to help the intended parents and want to see them have their own family and see the child grow up in that unit. We need to support those women and to make the law work for them.

Furthermore, many children are being born abroad, if the surrogate is based there. That creates more problems, because the child can be born stateless, making arrangements to come home to the UK complex. If the parental order could be obtained during the pregnancy, arrangements to come home with the child would obviously be far more straightforward. A number of MPs have dealt with scenarios in which a child is born abroad and there are difficulties in returning to the UK.

The international context of surrogacy can add to the difficulties of applying existing UK legislation to the reality of modern surrogacy. Surrogacy law can be complex for foreign surrogacy arrangements. There is no international harmonisation of English and international law, and we do not automatically recognise a foreign birth certificate naming the donor parents as the legitimate parents of a surrogate-born child. In stark contrast with adoption, which requires the thorough vetting of parents, anyone can enter into a surrogacy arrangement abroad.

Automatic recognition of the surrogate as the legal mother, however, can cause its own problems in the context of international surrogacy agreements. In 2008, a British couple who had paid £23,000 to a surrogate mother who bore twins for them in Ukraine were at first unable to bring the children back to the UK, since the couple were not recognised as the legal parents. That situation took a year to resolve, during which time the children were left “marooned, stateless and parentless”, leading the judge dealing with the case to issue a stark warning about how dangerous such a scenario is.

There are many practical problems to getting home safely to the UK with the surrogate-born child after the birth, because of issues to do with the right travel papers, entry clearance and citizenship. Parents then have to look at the legal status of the child as soon as they return and any necessary interim legal measures. For instance, are the eligibility criteria for a parental order all in place? What about the legal position of the surrogate, and her partner if that is relevant, under English law? The complications are many.

Rules on surrogacy vary from country to country, so not only do we need to look at our domestic law, but all countries ultimately need to look at the international framework. In some countries, surrogacy is banned completely, such as in Germany, Italy, France and Sweden. In some countries, the law is complex, such as in the UK and Australia. Elsewhere, 19 states in America have laws clearly recognising surrogacy and another 10 states allow unpaid surrogacy. Also, anecdotally, I know of same-sex couples who have moved to the States with work, in part because they know that in due course it will be more straightforward there for them to have a child through surrogacy. Thus, all children born via surrogacy in the USA are eligible for a US passport, regardless of the citizenship of the parents, but that is inconsistent with other countries.

In July this year, the Government of Thailand announced changes to their regime for commercial surrogacy, stating that all surrogates will have to be blood relatives. As I made reference to earlier, a case in Thailand hit the headlines over the summer, and one can only feel sympathy for everyone involved in it. The case of baby Gammy, however, absolutely highlights the pitfalls and difficulties for all concerned. The outcome of such international situations—involving Thailand in this case, but it could be anywhere—might be that surrogate arrangements become more covert, and no one wants that. What we want is clear and transparent arrangements in this country and abroad.

[Stuart Andrew (Pudsey) (Con)]

I congratulate my hon. Friend on securing this important debate. Among a number of concerns, many people fear exploitation. Is not preventing that another reason for the importance of reaching international agreements?

[Jessica Lee]

My hon. Friend makes a good point. The way to avoid such exploitation is clearly to have a clear and transparent structure. That is what is missing in domestic law, where there are arrangements, although they are not working properly, and internationally. Far fewer UK couples would consider going abroad if the domestic arrangements for them in England and Wales were completely straightforward, preventing them from feeling the need to travel around the world to find a suitable surrogate.

Parental orders, as I said near the beginning of my speech, have a strict six-month deadline in which to be registered once a surrogate has had the child. The law provided for no flexibility on that until very recently—a judgment was published in the past few days. In that case, the president of the family division of the High Court made the following comment:

“Can Parliament really have intended that the gate should be barred forever if the application for a parental order is lodged even one day late…It is the very antithesis of sensible; it is almost nonsensical.”

The judge then went on to make the parental order and the wardship was set aside. There had been significant delays in returning the child to the UK.

It can be said, therefore, that case law has moved matters forward, but the rules remain the same and that is a matter for Parliament to resolve and to do so early. We are dealing with people’s families and with emotive issues. That is the most important thing. If there cannot be flexibility in obtaining a parental order, that is a most unsatisfactory position. That must be one of the first matters in which there has to be flexibility in an application under family law.

I want to address the issue of same-sex couples. Since the Marriage (Same Sex Couples) Act 2013 passed through Parliament, we probably have had an increase in the number of same-sex couples looking to have a baby through surrogacy. That has been on the rise for some time, but the Act supports it as well. On Second Reading, the Minister gave one of the most thoughtful and measured speeches on the legislation, which I recall clearly, so I am delighted that she is responding to the debate today. She has always taken a thoughtful approach to the issues surrounding same-sex couples.

In the UK, anecdotally, same-sex couples conceive with the help of a friend, relative, or a surrogate introduced to them by a UK-based non-profit surrogacy organisation. As we know, such surrogacy arrangements commissioned in the UK are unenforceable by UK courts, so the problem remains. Increasing numbers of same-sex couples are travelling abroad for surrogacy. As I mentioned earlier, a popular destination is the USA, because some states can guarantee that both fathers will be named on a child’s birth certificate from the outset. But, again, we come back to the problems that I have raised before. Parliament did well by passing the same-sex marriage Act and progressing matters in that way, but for issues that follow on from that, Parliament needs to do the same. We must have an even-handed approach in addressing every aspect of people’s social and family lives, and that is why we need to update the law.

I have set out for the Minister my key requests. I accept that they are not small ones, and some will take time to grant, in particular those concerning an international framework. However, I genuinely feel that there is a real change in emphasis. There is a momentum to address the issue. Judges, as I have quoted, are saying that statute law is not right, and we need to move matters forward. We have an opportunity here today to take the initiative. We very much need to start the process, which would be welcomed across the parties. I have been helped by the right hon. Member for Birkenhead (Mr Field), who apologises for the fact that he cannot be here today. There is strong cross-party support for moving things forward. I urge the Minister to take this one-off opportunity and take a stand today and offer some solutions to these complex and extremely important questions, which could transform people’s ability to have their families in this country.

Pancreatic Cancer

Stuart Andrew Excerpts

Monday 8th September 2014 Westminster Hall

[Stuart Andrew (Pudsey) (Con)]

It is a pleasure to serve under the chairmanship of my neighbour, Mr Davies. I begin by congratulating the hon. Member for Scunthorpe (Nic Dakin) on securing the debate. It has been my pleasure to work with him in the past on the campaign for the children’s heart unit in Leeds, and I know how dedicated he is to a cause once he gets the bit between his teeth.

I also pay tribute to my hon. Friend the Member for Lancaster and Fleetwood (Eric Ollerenshaw). I was interested to hear the hon. Member for Stalybridge and Hyde (Jonathan Reynolds) say that my hon. Friend’s mother lives in his constituency. Having heard a lot about my hon. Friend’s mother, I would love to see the canvass session when the hon. Member for Stalybridge and Hyde knocks on the door asking for support at the next election.

On the subject of the election, as someone in a marginal seat I have started to reflect a bit on my time here and wonder whether I will be re-elected. I have been remembering the things that have happened during those few years. I will take away many good memories, and I will be sincerely pleased also to take away my friendship with my hon. Friend the Member for Lancaster and Fleetwood. Thanks to his experience in politics over many years, he has given me good counselling and good advice.

On the subject of the debate in particular, my hon. Friend has often struggled with something that was very personal to him and very difficult, and he has often worried about his privacy and that of his partner. I want to put on the record how proud I am of him as a friend, and how proud I am of his campaign. I did not have the privilege of meeting his partner, but my hon. Friend has done that job exceedingly well.

I add my thanks and congratulations to the actress Julie Hesmondhalgh. She will not know this, but we met many years ago. Longer ago than I want to think about, I was at a Manchester Pride event dancing away on the set of Baker Street in Granada Studios, when bouncing along next to me came Hayley, as we all knew her then. She has clearly put her enthusiasm and her smile into the campaign. Having worked in the charity sector, I know that it is a great achievement to get someone with such magnetism behind a campaign. She has done a fantastic job in supporting the charities involved.

In 2012, I attended another debate on pancreatic cancer in Westminster Hall secured by my hon. Friend the Member for Lancaster and Fleetwood. I also attended his debate in March this year in the main Chamber, in which he rightly called for the drug Abraxane to be made available on the cancer drugs fund in England. I made the point that, given the short time that some patients face, if Abraxane gives someone only an extra couple of weeks, those are still an important couple of weeks for patients and their families to get their affairs in order. I was keen to take part in yet another debate on the subject, this time as a result of an e-petition. Many people have thanked Maggie Watts and her fellow campaigners. This is one of the occasions when Parliament actually works for people in this country.

I have been involved in a similar campaign for ovarian cancer. Through a debate like this one and by meeting Ministers, we managed to get an awareness campaign piloted in several areas in the country. I hope that that will be the start of improving diagnosis of that cancer.

During the debate in May 2012, my hon. Friend the Member for Lancaster and Fleetwood told us that 8,100 cases of pancreatic cancer were diagnosed each year. It is sad and terrible that that figure now stands at 8,800. It is even more tragic that 8,300 people died from pancreatic cancer last year—that is 23 people every single day. In simple terms, the mortality figures for pancreatic cancer are getting worse and the survival figures have remained largely unchanged. More people are being diagnosed with the disease and more people are dying of it. That is happening at the same time as mortality rates for most other cancers are falling and survival rates for most other cancers are rising. There is a huge inequality of outcomes compared with other cancers that needs to be addressed. There is still so much that needs to be done to improve the chances for pancreatic cancer patients, as well as for their families and loved ones, who are often overlooked in such situations.

I will now explore the inequality of outcomes in a little more detail and in a couple of different ways. The truth is that there is variation in pancreatic survival outcomes, both internationally and regionally within the United Kingdom. I will take the international outcomes first. The UK lags behind many G7 and G20 nations when it comes to pancreatic cancer survival rates. According to the Pancreatic Cancer Action charity’s website, the five-year survival rates in the US and Canada of 6% are nearly double the survival rates in the UK. Australia is also ahead of the UK on the same measure with 5.2%.

Our European neighbours also seem to perform better than us on pancreatic cancer. The EUROCARE-4 study of 2009 found that the UK’s relative one-year survival rate for pancreatic cancer, at 15.85%, was well behind the European average of 20.9% and behind countries such as Portugal, Spain, Poland and the Czech Republic. Belgium came out on top with 28.3%, nearly twice the UK’s figure.

I will now come closer to home. I know that the figures may come about because of the different ways in which data are recorded, but the trend seems to be clear. Will the Minister say whether any work is being undertaken to try to establish why other countries seem to be achieving much better patient outcomes? Is the Department of Health doing anything to try to learn from those other countries?

The truth is that there are large variations in survival rates across the UK, too. Five-year survival rates in England, based on the 2012 data, were 5%, whereas the survival rates for Scotland were just 3.2%, Wales 3.4% and Northern Ireland 4.7%. One-year survival rates saw the same fluctuation: England on 19.6% and Scotland again behind on 15.7%. There are even massive variations between the regions of England. Using a regional comparison of five-year survival data put together by the charity Pancreatic Cancer UK, based on the old English cancer network boundaries, the best-performing part of the UK was north-west London on 8%. That rate was four times greater than the rate in the Greater Midlands cancer network area. My own area of Yorkshire fared about average on 3.6%.

Again, those variations could be down to the way the data are collected, public health issues or any number of things, frankly. We need some research to get the answers because, on the face of it, if we can bring the worst performing parts of the UK up to the very best, we will go from being the laggard in world performance to being the world leader. What is the Department doing to try to work out why there are such variations in outcomes across the UK? What can we learn from north-west London and export to other parts of the UK? How can we start to end the existing postcode lottery? I am asking for research into why such differences exist.

In addition to more procedural and systems-oriented research, we need more scientific, medical and clinical research into pancreatic cancer. The National Cancer Research Institute report on spending across all cancer types between 2002 and 2011 concluded that spending on pancreatic cancer research is still relatively low. As we heave heard, £5.2 million a year is put into site-specific pancreatic cancer research, compared with well over £40 million for breast cancer. It seems fair to draw a link between those levels of research funding and the relative change in breast and pancreatic cancer survival rates over the same period. Breast cancer survival has soared, whereas pancreatic cancer survival has remained largely the same.

The Minister and her colleagues in the Department of Health have given a number of answers to written questions on this subject over the past year or so. All those answers point to large sums being spent at different institutes, including the Liverpool pancreas biomedical research unit, where £6.5 million is being spent on researching gastrointestinal disease. Although some of that money is likely to be spent on pancreatic cancer research, it will be only a small portion of the overall sum.

The fact remains that, although funding for general cancer research is welcome, and some of that work will undoubtedly benefit advances in pancreatic cancer care, there is still not enough site-specific research. Given that pancreatic cancer is such a difficult cancer to diagnose and treat, more support from major funders is needed if we are to see the advances that we need. Does the Minister have any plans to work with the NCRI, the Medical Research Council, the National Institute for Health Research and others to seek increased funding for pancreatic cancer research in coming years?

As we have heard, pancreatic cancer has some of the worst survival rates of any cancer tumour. Attention must rightly be focused on improving diagnosis and patient care, but support following a terminal diagnosis is also crucial. I have bored hon. Members many times about my background in the hospice movement, but in that movement I have seen the excellent work being done by so many organisations. I am pleased that we are seeing more palliative care in the community, but it is important that we get it right. There is a saying that nothing is certain in life other than death and taxes. In politics we seem to talk an awful lot about taxes, but we do not talk a lot about death.

I have seen so many people who were not able to die in the place they wanted. Recent studies show that 79% of people want the opportunity to die at home, and slightly fewer would prefer to die in a hospice, but just 23% of people get to die at home. The reason is that it takes planning, and the problem with pancreatic cancer is that time is often against the patient. There is not an opportunity for patients to go in and get the excellent care that hospices provide. Families I have spoken to have wanted to get their relative out of hospital but, as my hon. Friend the Member for Lancaster and Fleetwood said, they had entered the cancer world and suddenly all the decisions that had to be made became so difficult. Before the family knows it, the patient has sadly lost their life.

I pay tribute to the work of hospices, and I hope that we can do more work so that they are able to get to these patients quicker and provide a better environment as patients come to the end of their life. I hope we can expand palliative care in the community, and I pay tribute to nurses such as the Macmillan nurses, who offer excellent home support.

There are a couple of things that would help to get palliative care right. Access to emergency medicine packs is important. It is vital that they are stored in the homes of palliative patients who have chosen to spend their last days at home. The packs contain strong medication that can be administered by a registered nurse or doctor. Pancreatic Cancer UK’s support line, however, has received calls where that has simply not happened. In one case, the family had to wait for the Macmillan nurse to arrive and there was no emergency medicine pack. The nurse had to obtain a prescription from a GP and collect it from a pharmacist, which took four extra hours. That was incredibly upsetting for the patient and for the family, who had to watch their loved one suffer. I would like us to look more broadly at developing further packages of 24-hour, seven-day-a-week community care so that we can help more people die in the place of their choice.

We have heard some excellent, varied points today. There is a danger in such debates that we all make the same points, but it has been incredible that today’s speeches have all touched on different things. I also praise David Park for the work he has given us, and, finally, I pay a special tribute to my hon. Friend the Member for Lancaster and Fleetwood. I will break a parliamentary rule by saying that, Eric, you have done a fantastic job.

Oral Answers to Questions

Stuart Andrew Excerpts

Tuesday 15th July 2014 Commons Chamber

[Mr Hunt]

I make it absolutely clear that everyone should follow NICE guidance. As the right hon. Gentleman has talked about the reorganisation, will he please accept that we are now doing 850,000 more operations on the NHS every single year? That means that more people are getting help with their hearing, their hips and their knees, and with all the other things that they need. He bitterly opposed that reorganisation, but he must now realise that he was wrong to oppose it then and he is wrong to oppose it now.

[Stuart Andrew (Pudsey) (Con)]

T2. I recently had the pleasure of meeting my constituents Susan Childs and Doreen Smulders, who raised the issue of the inequalities that exist for men with prostate cancer. Will my right hon. Friend tell me what steps are being taken to address the shortfalls in care and support that such men are receiving across the country?

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

My hon. Friend is right to suggest that we want to drive consistency across the country, and NHS England is taking great notice of the cancer patient experience survey in a number of areas of cancer care. It has been a real driver of change where it has identified variation. I am sure he will welcome the fact that the overall range of variation for many indicators relating to prostate cancer has narrowed. None the less, we want to see NHS England working with NHS Improving Quality—NHS IQ—and others to ensure that struggling organisations are brought up to the standards of the best. The survey is a good way of driving that.

Oral Answers to Questions

Stuart Andrew Excerpts

Tuesday 10th June 2014 Commons Chamber

[Mr Speaker]

Order. I encourage the Minister to learn to provide more succinct answers. They are always too long.

[Stuart Andrew (Pudsey) (Con)]

12. What the planned timetable is for his Department’s congenital heart disease review.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

The review is being undertaken by NHS England, which has been engaging with a wide range of stakeholders, of whom my hon. Friend is one. He is a doughty champion for his city, and for these services. I understand that NHS England will consult on draft service standards later this year, but will not do so in July as was previously expected. All information relating to the review can be found on the organisation’s website, which is updated fortnightly. I spoke to officials yesterday in order to update myself, and I know they will post another update very soon, if not today.

[Stuart Andrew]

According to the mortality case section of the Secretary of State’s review of the closure of services at Leeds, many of the recommendations could apply more widely to other units throughout the NHS. Given that no other unit has received anything like as much scrutiny as Leeds, will my hon. Friend ensure that any continuing audits take place in the other units as well, so that standards can be maximised?

[Jane Ellison]

That is a very good point. This Government and this Secretary of State have championed transparency more generally, because we all believe that it is essential to our ability to build on the success of the health service and maximise its service to patients.

Pancreatic Cancer

Stuart Andrew Excerpts

Tuesday 4th March 2014 Commons Chamber

[Eric Ollerenshaw]

The hon. Gentleman hits the nail on the head. It is of course a UK issue, and one of the concerns is the regional variation in performance on early diagnosis and the impact that is having. We want to get rid of that.

I want to talk today about the new drug Abraxane. The vast majority of pancreatic cancer patients are diagnosed so late that the benefit of any new drug can be measured only in months, rather than years. Our worry is that, compared with other cancers, that benefit might be deemed insufficient simply because it is measured in months and might not register highly on the quality-adjusted life years measurement scale.

That is why Pancreatic Cancer UK launched its Two More Months campaign, which highlights what patients would have been able to do with two more months, which is the average additional survival time provided by Abraxane. I have a few quotes from relatives of those who have died from pancreatic cancer:

“Two more months would have been a significant amount of time for Nicola, only 25 years old herself, to spend with her four year old daughter”.

That was from Chris, Nicola’s brother.

“Two more months would have meant my daughter Gemma might have got to wear her wedding dress and walk down the aisle with Adam”.

That was from Debbie, Gemma’s mum.

“Two more months would have seen my wife Jill finish her Open University Modern Languages degree and attend an international social work conference in Buenos Aires, both of which she would have been very proud of”.

That was from Dave, Jill’s husband.

“Two more months would have seen Andy and I celebrate our second wedding anniversary, and given us more time to prepare for what was to come”.

That was from Lynne.

For me, two more months would have meant one last Christmas with my partner—

[Stuart Andrew (Pudsey) (Con)]

May I pay tribute to my hon. Friend, who has done tremendous work on this issue and been a great advocate for all those affected by pancreatic cancer? I know from my experience of working in the hospice movement that time is the thing that all patients want. If that drug can provide just a little more time, surely it is something that all those families should be given.

[Eric Ollerenshaw]

rose—

Hospices (Children and Young People)

Stuart Andrew Excerpts

Wednesday 18th December 2013 Westminster Hall

[Stuart Andrew (Pudsey) (Con)]

It is nice to serve under your chairmanship, Mrs Osborne. I am pleased to have secured the debate on an issue that is important for me personally.

I have mentioned on a number of occasions that it was my privilege to work in the hospice movement for some 16 years, mostly in the children’s hospice movement. Although being elected to this place was one of the proudest days of my life, it was tinged with a little sadness, because it meant that I had to leave Martin House children’s hospice. Through my time there and at Hope House children’s hospice, I got to see and hear at first hand the incredible stories of so many children, young people and their families. I got to witness people offering care and support not only because it was their job, but because they cared passionately about the families they were caring for. I got to see some remarkable courage and resilience on the part of children and of families living with the constant prospect that their child would not live into adulthood.

Many of my friends often said that they could not understand how I could work in such a place. Their perception was that a children’s hospice was a depressing place, filled with sadness and despair. For someone who walks into any children’s hospice in this country, however, that preconceived idea simply disappears. Of course there are sad days, when a child has deteriorated or come to the end of their life, and there are moments of pain, but for the most part it is rare to visit a children’s hospice and not to hear the sound of music in the background and children laughing, and an atmosphere of warmth and support, not to mention the wonderful smell of cooking and baking by the volunteers.

Martin House hospice is not only the hospice that I worked at, but it serves the children in my constituency. When it opened its doors for the first time some 25 years ago, it was only the second children’s hospice in the UK and it served most of the country. As time moved on and more hospices were built, so its catchment area changed. Today, Martin House offers practical help and support through a range of services to some 400 children and their families. That is the critical bit: it is not only about caring for the child.

When I spoke to many of the families, they would try to describe their feelings on learning that their child was going to have a short life. The most memorable reply that I ever heard was from someone who described it as the loss of hopes and dreams. At the birth of their child, they had dreamt about the child’s first steps, first words and first day at school, about the child going to university, getting married and eventually having children of their own. The family said that they had to make new dreams when they realised that their child would not be able to do those things. Martin House was there to do just that: to help them to build a life for their child.

The hospice offers a host of services that have developed over 25 years through knowledge, experience and listening. The impact on a family in which there is a child or young person with a life-limiting illness is difficult to imagine, but Martin House—like all hospices around the country—is committed to being alongside the children and their families. Such close work has helped Martin House to develop and fine tune what it has to offer, providing truly family-led care and support. The ongoing day-to-day care of a child with a life-limiting illness, which may go on for a number of years, can be a physical and emotional strain on the whole family. Martin House shares that care with them, and it can take various different forms from symptom control, through emergency and respite care to terminal care.

Respite care offers the opportunity for a short stay to give the family a break. I spoke to one father who said that if he got up eight times in the night he would consider it a good night’s sleep. His daughter was eight years old at the time. Imagine doing that for more than eight years—it is no wonder that they need respite and support. Sometimes they may all stay together as a family, or sometimes they leave the child at the hospice, but it is an opportunity for them to recharge their batteries. Many a time I saw them looking exhausted when they arrived on a Friday, but was pleased to see them looking much more relaxed on Monday morning after a weekend of not having to think about feeding the child, doing the ironing, washing or cooking—all of that was taken care of by the wonderful staff.

Emergency support is there for when the families hit those everyday problems that we all experience. If a relative falls sick or there is a problem at home, it is difficult enough for us to deal with, but for someone with a child with a life-limiting illness such things are much harder. Knowing that there is someone at the end of a line, in a hospice, who is able to help is a great relief.

We must also think about the terminal care. No one really wants to think about a child or young person dying, but to be able to think about or, where possible, plan for that time is something that those care teams do with great skill and compassion.

[Mr Lee Scott (Ilford North) (Con)]

I congratulate my hon. Friend on securing the debate. Does he share my admiration for the way in which staff deal with parents, such as at my own local children’s hospice, Haven House, which serves the young people of my constituency in that terrible situation. The care, the passion and the compassion that they show to the parents enables them to deal with something that, in honesty, no parent would want or should ever have to deal with.

[Stuart Andrew]

I certainly agree. I got to know Haven House through my time working in various hospices. It and the other hospices do tremendous care—even at the most difficult and challenging times, they manage to do it with a great sense of dignity, which we should all be proud of.

Ensuring that the families are supported through the most difficult period is paramount, but also beyond that, through bereavement support. What is good about many of the hospices, Martin House included, is that the services are offered not only at the hospice, but in the family home, to ensure that as much as can be done is being done. The first head of care at Martin House was an inspirational lady called Lenore Hill. I remember that her phrase to the families was: “The answer is yes; now, what is question?” Such a philosophy is what makes the hospices so wonderful.

Time has gone on and medical advances have been achieved, so many of the children are now living longer. For example, when I joined Hope House children’s hospice in Oswestry, boys suffering from Duchenne muscular dystrophy would invariably live to about 18. By the time I left Martin House, however, some 14 years later, some sufferers were living into their mid- and late 20s. Naturally, that is good and wonderful news, but it presents new problems.

[Mark Pritchard (The Wrekin) (Con)]

I pay tribute to my hon. Friend’s dedication and loyalty to the hospice movement over 16 years and for representing the movement today in Parliament. He mentioned Hope House. Will he join me in paying tribute to all the volunteers and staff at Hope House in Shropshire and at the Severn hospice, which my hon. Friend also knows? They do such a great job week in, week out.

[Stuart Andrew]

During the course of the debate, all the hospices are going to be mentioned, which is wonderful and exactly what I want from the debate. My hon. Friend is absolutely right.

[Glyn Davies (Montgomeryshire) (Con)]

Will my hon. Friend give way?

[Stuart Andrew]

I will give way in a moment, but I must deal with the previous intervention first. Hope House deals with the constituency of my hon. Friend the Member for The Wrekin (Mark Pritchard), as well as with the Welsh area through Ty Gobaith, so I will also take an intervention from my hon. Friend the Member for Montgomeryshire (Glyn Davies).

[Glyn Davies]

I am grateful to my hon. Friend for allowing me to intervene. I, too, want to laud the services from Hope House, which serves most of my constituency. Will he also accept how important it is to have a good relationship across the border between England and Wales? So many services simply fall apart because of the border, but at least it does not for this particular service, because of the activities of Hope House.

[Stuart Andrew]

That is absolutely right. A lot of lessons can be learned from the hospice movement on providing care, because what matters at the end of the day is the children and the families—they should be able to access services as easily as possible.

I was talking about the youngsters living longer, but the hospice environment was generally geared towards young children. It started to become less appropriate or even desirable for young adults to go into the same building. The trustees at Martin House took the brave decision to build a new, separate teenage unit in the grounds. Through generous public donations, Whitby Lodge opened its doors in 2002, the first hospice of its kind in the United Kingdom. It has been a huge success, and is being replicated around the country, because young adults get to behave just like that: as young adults. The conversation is more appropriate to their age, and they can share and talk openly about their own needs, fears and hopes. As a result, the care team can learn more about the young people and help them where they can with their particular ambitions. While I was based at Martin House, a number of young people went to university, encouraged by the care team. The team also tried to help those young people when they were going through the transition from child care to adult social care.

[Mr Robin Walker (Worcester) (Con)]

I congratulate my hon. Friend on the important and passionate case that he is making for children’s hospices. As he has pointed out, people are now living much longer with complex conditions, so transition is a key area. Does he welcome the work that Acorns children’s hospice is doing with the Help the Hospices movement to design better pathways for transition?

[Stuart Andrew]

Absolutely. I will talk in a little more detail about transition later. The Care Bill had its Second Reading on Monday, and I raised specific points about transition during that debate, because it is a big issue for many of those young people.

The conversations those young people had were very moving. I will never forget one particular young man. We were recording a promotional video to show to health professionals and as a fundraising tool, and we asked the young people at the hospice to say what it meant to them. The head of care was interviewing them, so that they were with somebody they knew and felt as comfortable as possible; she asked that young man, “What is the most difficult thing about your condition?” He considered the question for a moment, and what he said had a profound effect on me. He said: “Falling in love.” At that moment, it hit me that despite their physical limitations or their conditions these are still young people, with all the same feelings and hopes that we all experience. He wondered if anybody would ever love somebody who was, as he put it, “Like him.”

That local experience at Martin House is but one piece in a huge jigsaw. Support and palliative care do not come only through hospices such as Martin House, Hope House or the others that have been mentioned. I want to cover three areas: NHS funding for children’s palliative care; short breaks; and support with mobility for children under three.

[Fabian Hamilton (Leeds North East) (Lab)]

I congratulate the hon. Gentleman on securing this debate. Two organisations that help hospices and the hospice movement throughout the country are the National Council for Palliative Care and the Help the Hospices movement, which has already been mentioned. Both ensure that the high standards that all hospices aspire to and achieve are maintained through mutual good practice and the sharing of experience. Does he agree that those organisations give superb support not just to Martin House, which he has mentioned, but to St Gemma’s in my constituency and all the other hospices that hon. Members have mentioned?

[Stuart Andrew]

The hon. Gentleman is absolutely right. Those umbrella organisations help to share best practice, and it is through them that the hospice movement has grown so significantly. The movement is something that we can be proud of worldwide: we now have visitors from all over the world coming to our hospices to see how it is done—and, frankly, it is done brilliantly.

As I was saying, the national picture is much bigger. There are some 49,000 children and young people in the UK living with a life-limiting or life-threatening illness that means that they need palliative care. There are some wonderful and committed professionals providing that care in some inspirational places—not just in hospices, but in the family home, in hospitals and in community settings. Families with children with life-limiting illnesses are some of the people most in need in the UK, but many are still not getting the help and support that they require. Although services offer a day-to-day lifeline to families, many of the challenges that they face can be addressed only by changes to policy, both nationally and locally.

In November, I was proud to co-host a reception in Parliament for Together for Short Lives, the UK charity that supports all children with life-limiting illnesses. At that event, the charity launched its policy priorities for the next Parliament. During the reception, the audience heard from Lucy Watts, who is 20 years old. Lucy described the impact that her condition has on her life, the care that she receives and the needs of young people like her. She became ill at 14, and was diagnosed just after her 15th birthday. Lucy is fed straight into her bloodstream, via a central line, and can sit up only for up to five hours a day. She is wheelchair-bound, but has to spend the majority of her time in bed. Speaking about the gap in services for young people with palliative care needs, she said that

“what has been forgotten is that in between children’s and adults, there are the young adults. We deserve the same recognition and distinction as children’s and adult services, but it’s barely recognised. There is the transition period, but young adult care goes beyond transitioning from children’s services to adult services. As a result, the transition can be a huge leap, too many changes too soon without factoring in the needs of people who are not children, but not mature adults yet either.”

That is a powerful quote from that young lady.

Making sure that the right children’s palliative care services are available, in the right place, at the right time, is crucial. Those services should cover the whole spectrum of care, including short breaks for children and families. Commissioned and delivered effectively, children’s palliative care can play a cost-effective role in supporting early discharge for children from acute care settings through step-down care. It can also help to reduce unplanned admissions among children to acute care settings. A Government-commissioned funding review has highlighted that hospital admissions in the last year of life for children who need palliative care can cost an estimated £18.2 million. That far outweighs the cost of providing palliative care to children outside the hospital setting.

Research has also shown that short breaks provided by children’s hospices, which often include health care interventions, help to reduce stress on families and demand on public services. Children’s palliative care services, including children’s hospices, must be funded fairly and sustainably. Families need to know that their local services will continue to be able to provide the care that they need—an issue that was reflected in the 2010 coalition agreement.

I pay tribute to my field within the hospice movement: the wonderful fundraisers, who raise millions and millions of pounds for hospices. My job as head of fundraising was made much easier by the dedication of many volunteers and supporters. We had to raise over £4 million a year to run the hospice, and somehow—I do not know how—those volunteers managed to do that year in, year out.

[Karen Lumley (Redditch) (Con)]

I am grateful to be able to contribute to this debate. My hon. Friend the Member for Worcester (Mr Walker) mentioned Acorns, the hospice that serves our community. Does my hon. Friend the Member for Pudsey (Stuart Andrew) agree that volunteers do an amazing job, and that the NHS could learn a great deal from how we run our hospices?

[Stuart Andrew]

That is a very valid point. Hospices do inspiring and innovative work.

[Julian Sturdy (York Outer) (Con)]

I congratulate my hon. Friend on securing this debate. He is making an incredibly powerful speech. We know how important fundraising is to the hospice movement. In my constituency, I have been working on and fundraising for Martin House’s “good night’s sleep” appeal, which is sponsored by BBC Radio York. It aims to provide the respite care that parents need—an issue that my hon. Friend touched on at the beginning of his speech. Will he join me in expressing his support for that appeal?

[Stuart Andrew]

Absolutely. I gave an interview to BBC Radio York this morning, and assured the people involved that we would get a mention of their fundraising efforts into this debate. My hon. Friend has managed to do that, and I am extremely grateful to him for ticking that box for me.

[Stephen Gilbert (St Austell and Newquay) (LD)]

I, too, congratulate my hon. Friend on securing this important debate. He is making a powerful point about funding. Demand for beds at Little Harbour, run by the Children’s Hospice South West in my constituency, has doubled recently. Since 2006, we have seen a 30% increase in NHS funding, but only a 10% increase in hospice funding. Does he agree that the balance needs to be redressed, and that we need to do our bit to make sure that hospices have the funds that they need?

[Stuart Andrew]

Absolutely. My hon. Friend makes a valid point, and brings me on to the issue of funding from NHS England. Children’s palliative care is commissioned by the NHS using two separate methods. The first is through NHS England specialised commissioning. The care is commissioned directly by NHS England, and covers functions such as prescribing unlicensed medicines and managing complex symptoms. NHS England has published a specification for specialised children’s palliative care services, which came into force in October.

The second means of commissioning is through clinical commissioning groups, which should commission the more general aspects of children’s palliative care. There is confusion among some CCGs about which elements they should commission. I hope that the Minister will provide the answers, today or later, to ensure that the CCGs know that they are responsible for commissioning children’s general palliative care and know what that should be.

Overall, statutory funding for children’s palliative care in England is patchy and inconsistent. For example, local NHS commissioners contribute an average of only 13% to the care costs of children’s hospices. However, that masks significant variation. Three hospices in England receive no local funding from their NHS commissioners, and three organisations account for one third of their total income. The Government currently provide a central grant of more than £10 million through NHS England to address the shortfall, and they have committed to introducing a new per-patient funding system for children’s hospices as part of the coalition agreement.

The umbrella organisation, Together for Short Lives, shares the aspiration and vision for a transparent funding system that is fair to all sectors, and it is supporting NHS England to develop it. However, there is growing concern in the children’s palliative care sector about whether an NHS tariff will deliver a more sustainable future, and how practical it will be to implement. I have a couple of questions for the Minister. Will she set out an implementation and commissioning plan for the tariff, including a commitment to consult on the detail and fully test the tariff? Will she commit to a simple tariff that includes the central elements of children’s palliative care, including short breaks when there is an assessed need?

Many families rely on short breaks to recharge their batteries and spend time together. However, not all of them can access such breaks, because commissioners do not always commission them appropriately. Children’s hospices receive less than 2% of their care costs from local authorities, despite £800 million being available to fund short breaks. Half of children’s hospices receive no funding from their local authority. Will the Minister ensure that local authorities ring-fence money allocated to them for short breaks, and audit local authority spending on them, to ensure that as many families as possible are able to have them?

I am conscious that time is passing, and I am sure that other hon. Members want to make a contribution, so I will write to the Minister about the final point I wanted to talk about—mobility. Children’s hospices in the UK are a beacon of a decent and civil society. People in other countries look to them with awe and admiration. They do truly amazing and innovative work, and always strive to make the best of short and difficult times. There is a wonderful saying in the hospice movement: “While we cannot add days to their lives, we can add life to their days.” It is no exaggeration to say that my outlook on life changed significantly through working in the hospice movement. My opponents in my constituency referred to me in their leaflets a couple of times as “our ever-smiling MP”. After what I have witnessed and been inspired by, I am pleased by that remark. All the families have been determined to enjoy life, and I think how lucky I am.

I would like to finish with the words of Lucy Watts, the young lady I mentioned earlier, who movingly said:

“Quality of life is of the utmost importance when you have a life-limiting illness, as you want to be able to enjoy the time you have left. Although our bodies might be dying, our minds and spirits are fighting to live. I'm still a young person with wants, needs, hopes and dreams. I want to have fun and enjoy myself, do things people my age normally do, and I have plans and goals for the future.”

I hope that we as a country and as a Parliament can help her to fulfil those dreams.