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 The law on surrogacy is outdated, limited and in places illogical.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.

Care Bill [Lords]

Stuart Andrew Excerpts

Monday 16th December 2013 Commons Chamber

[Stuart Andrew (Pudsey) (Con)]

It is a pleasure to follow the hon. Member for Blaenau Gwent (Nick Smith), who raised a number of serious issues.

Some wide-ranging speeches have been made today, but I shall make a short speech, which will primarily concern the clauses in the Bill that relate to young people and their transition to adult social services. I have spoken on a number of occasions about my experience of working in the hospice movement, particularly the children’s hospice movement, over the last 20 years or so. During that time, I saw some incredible work done by the staff at the hospices, but, more important, I observed the tremendous dedication of the parents and families of the children who worked day and night to ensure that they were given the very best care.

When I joined the last hospice where I worked—Martin House, which at that time served most of Yorkshire—the construction of its new building, Whitby Lodge, had just been completed. The trustees of the charity had identified a real need, the need to look after those who could be described as the “older younger people”. As time has passed, many young people in hospices have been living longer. That is a good thing, but the theme in the children’s hospice became a little bit childish for those who were entering their teens.

In England, more than 40,000 children and young people aged between 0 and 19 currently have long-term health conditions that will eventually end most of their lives, and for which they may require palliative care. Owing to medical advances, more young people with a range of conditions are living into adulthood than ever before. The number has increased by some 30% over 10 years, and the highest rate of increase is among those aged between 16 and 19, who now account for some 4,000—or one in 10—of those aged between 0 and 19 who need palliative care.

When I worked at Hope House children’s hospice in Oswestry, some of the young boys who suffered from Duchenne muscular dystrophy would be lucky to live beyond the age of 18. When I left Martin House, many were living into their late twenties. That is a great thing, of course, but it does mean that we must think about how we can help such young people. The majority of those who may require palliative care have a range of severe disabilities and complex health needs. Contrary to popular belief, cancer represents just under 14% of diagnoses; most of those young people have cognitive impairments, which means that that they lack capacity, and many are cared for over long periods by their parent carers.

Many young people with life-limiting or life-threatening conditions who are more cognitively able struggle to achieve independence and enter education or employment, because plans are not made for them. Those who are unlikely to be cured by treatment are offered palliative care. Palliative care for young people is not simply end-of-life care, but focuses on enhancing the quality of their lives. In their early to mid-teens, young people receive palliative care and other support from children’s services. In their later teens, they start to receive services from adult agencies which assume responsibility at different points after their 16th birthdays. The transition is often complex, and traumatic for families who are already coping with extremely difficult circumstances.

A successful transition needs to address both the transfer of responsibility for young people from children’s to existing adults’ social care, health and education services, and the development of new adult services that are tailored to young people’s additional needs. The transition needs to be planned for years in advance, but, at present, planning is often disjointed and poor. The reduced services and support routinely offered by adult agencies, which are often focused on older people and end-of-life care, come as a distressing shock to many young people and their families. Parents have described the transition as like “standing on the edge of a cliff, about to fall into a black hole”. Poor transitions lead to increased illness, adverse social and educational outcomes, and sometimes even premature death.

Let me ask the Minister some specific questions. Will the statutory guidance on the Bill’s transition clauses which the Department of Health is producing for local authorities ensure that when a child who needs services reaches the age of 14—and is likely to continue to need services as an adult—the local authority initiates advance planning of the care needs that that child will have as an adult? Will it ensure that, from the age of 14 and by the age of 16, every young person who needs services has a five-year rolling transition plan in place, which specifies when his or her needs assessment is likely to take place? Will it ensure that when a child who needs social care reaches the age of 14, the local authority initiates advance planning of the carer’s needs when the child reaches the age of 18? Finally, will it ensure that the full range of services that young people with life-threatening and life-limiting conditions will require as adults—including local authority housing services to help them to live independently—are involved in the transition planning process?

As I have said, it has been my privilege for many years to work with so many inspiring young people and their families. In the hospices where I have worked, I have seen the staff do incredibly hard and great work. They do a tremendous job in trying to help families through the minefield of the care system. I think that the Bill offers us a real opportunity to make things just a little easier for families who are looking after children and young people with life-limiting conditions.

Oral Answers to Questions

Stuart Andrew Excerpts

Tuesday 26th November 2013 Commons Chamber

[Mr Jeremy Hunt]

We are looking at that very closely. We are big supporters of having a free trade deal between the EU and the US, but we do not want to do anything that would affect the fundamental principles, values and practices of the NHS.

[Stuart Andrew (Pudsey) (Con)]

The new review into children’s heart units feels very different, and I am pleased that everything is on the table. However, I was concerned to learn that the task and finish group has decided to meet in private. Given the group’s importance in decision making, and remembering the experience of the Safe and Sustainable review, does my hon. Friend agree that, in the interests of openness and confidence, the group should meet in public?

[Jane Ellison]

My hon. Friend has been a great and sustained champion of that cause in this House and in speaking up for his local hospital and his constituents. NHS England is clear that all substantive decisions on the new review on congenital heart disease will be made by its full board, which meets in public, so there is no question of a major decision being taken in private. With regard to the sub-groups, including the one he mentioned, their papers and minutes are all published, but for practical reasons none of them meets in public, and that is normal practice. However, all major decisions will be taken in public by the full board.

Oral Answers to Questions

Stuart Andrew Excerpts

Tuesday 16th July 2013 Commons Chamber

[Mr Hunt]

If the hon. Lady heard the exchange earlier, she will know that what Robert Francis was recommending was evidence-based tools, not a national minimum staffing level. The reason for that is that the number of nurses needed varies from hospital to hospital and ward to ward. We need to make sure that that happens. In the best hospitals it already does. The system that we have—this was supported by the shadow Health Secretary in his evidence to the Francis review—is not one where the Secretary of State sits behind his desk and dictates the number of nurses required in every hospital. If we did that, we would not be able to run the NHS properly, but we need to make sure that there are proper standards in place, which is why we have a chief inspector of hospitals to make sure that that happens.

[Stuart Andrew (Pudsey) (Con)]

T9. It is right that clinicians should speak out about safety in our hospitals, but does my right hon. Friend agree that now is probably not the right time for clinicians to be speculating in the national media about the safety at Leeds heart unit, given that the Department has yet to release the second phase of the review, as this endless speculation is causing great anxiety to already worried parents?

[Mr Hunt]

I agree with my hon. Friend. He has campaigned very honourably and sensibly for children’s heart services at Leeds. This is not a time for speculation. We will announce this month what the new process will be for resolving Safe and Sustainable. He and I both want this to happen as quickly as possible to remove that uncertainty. Also, we have to find a way of making sure that the data are solid and that we can trust them.

Complex Regional Pain Syndrome

Stuart Andrew Excerpts

Tuesday 9th July 2013 Westminster Hall

[Iain Stewart]

I have much sympathy with what the hon. Gentleman says, and if he bears with me, I will address training and research funding a little later.

The NHS Choices website sets out the quality of care and treatment that CRPS sufferers should receive due to the complex nature of the condition. My constituent should have been provided with a care team comprising a physiotherapist, an occupational therapist, a neurologist, a psychologist, a social worker and a pain relief specialist. He informed me that he has not received such care, as most health professionals whom he has encountered do not even know the condition’s acronym.

That leads me to my principal argument. If NHS clinicians do not sufficiently understand the condition, how will they be able to diagnose it properly and ensure that patients are adequately treated and cared for? The NHS Choices website says that it is hard to estimate exactly how common CRPS is because many cases go undiagnosed or misdiagnosed. I think the hon. Gentleman was referring to that point.

My constituent contends that possibly 250,000 people in England have not been properly diagnosed. He is understandably impassioned about the issue and has been carrying out his own research using American sources—it appears more research is being conducted into the condition in America.

From my own research, I learned from one study that as many as one in 3,800 people in England may be affected by CRPS. Therefore, going by the 2011 census estimates, 14,000 people could either have been misdiagnosed or remain undiagnosed. Although that might appear to be a small number by comparison with my constituent’s estimate, it does not diminish the issue’s importance.

The core principles of the NHS state that good health care should meet the needs of everyone and should be based on clinical need. Kevin Scardifield is unable to do the everyday things that other people take for granted. He was a police officer before the onset of the condition—a profession he greatly loved but had to give up. So debilitating is the condition that, by the middle of last year, he had been able to leave the house only six times, which was just for a few yards to the GP.

I am sure that Members can appreciate why this is such an important issue and why Kevin Scardifield has been campaigning hard for proper diagnosis and treatment. Since he made me aware of the condition, I have made a number of representations to the Department of Health, the local hospital, the primary care trust—now the clinical commissioning groups—and even the Department for Work and Pensions.

I am grateful to the Minister and his predecessor, the right hon. Member for Sutton and Cheam (Paul Burstow), for their replies to my constituent’s concerns when I brought them to their attention. Had my constituent felt that his concerns had been fully addressed, however, we would not be having this debate, so if the Minister will forgive me, I will raise a number of specific issues. First, as I have mentioned, people are either being misdiagnosed or remain undiagnosed because NHS clinicians do not appear to have sufficient awareness of the condition.

[Stuart Andrew (Pudsey) (Con)]

I congratulate my hon. Friend on raising the issue. Although I take an interest in health issues, CRPS is new to my attention. Only today, I was contacted by a lady from Leeds who is a sufferer, and listening to her story was very harrowing. Is my hon. Friend surprised, as I am, that there is only one specialist centre in the UK? That centre is in Bath, which is a long way from many places. If CRPS is diagnosed early, there is a high chance of it going into remission, which would be great for the NHS and, more importantly, for the patients involved.

[Iain Stewart]

My hon. Friend makes an important point, and I suspect that if we spoke to all our colleagues we would find that they, too, have been contacted by constituents with this condition. One of the points that I will make in a few moments is on the need for greater research and specialist services, so that the types of benefit that he rightly describes can be identified and delivered.

Secondly, the number of people diagnosed with the condition is unknown. Indeed, the Department of Health has informed me that it does not hold such records. My constituent informs me that, in 2010, he was told by NHS Direct that just over 11,000 people had been diagnosed in the United Kingdom. In 2012, he came across some information in the CRPS guidelines prepared by the Royal College of Physicians that quoted research suggesting a higher incidence of CRPS in Europe. On the back of that, he again contacted NHS Direct, and this time he was informed that it had been ordered to stop keeping records and to delete existing ones, as that responsibility would be undertaken by the Office for National Statistics. The ONS, however, replied that no such responsibility had been passed to it. Will the Minister clarify that issue and assure me that there is a strategy in place adequately to capture the number of people being diagnosed with CRPS? Will he also look into claims that specialists are failing to highlight the seriousness of the condition, particularly its potentially degenerative nature?

Thirdly, there does not seem to be an agreed pathway within the NHS for the treatment and care of those diagnosed with the condition. If there is, it was not reflected in the care that my constituent received. Will the Minister ensure that all NHS trusts and clinical commissioning groups follow the guidelines?

Fourthly, compared with the United States and other European countries, we are not doing enough to research the condition with a view to finding a cure and ensuring an improved quality of life for CRPS sufferers. While preparing for this debate, I observed that there was more information on the condition on US-based websites than on UK-based ones. I have also been unable to find UK charities or support groups for CRPS. Everyone can be proud of the fact that since the start of modern clinical trials, 39,179 trials have been made or are in progress to find a cure for cancer. The UK has carried out about 2,299 of them. The UK Charity Commission has 976 cancer charities on record, and the NHS spent more than £375 million between 2008 and 2012 on researching a cure for cancer. Clearly, that is a wonderful amount of research, but during the same period, only 76 trials on CRPS have been conducted worldwide. Holland, with a population of just over 16.5 million, has carried out three trials, and Switzerland, with a population of 8 million, has carried out two. The UK has a population of more than 60 million, yet I have been unable to locate a record of our carrying out any trials.

In addition, the NHS does not appear to have invested much in researching CRPS. I understand that one project was carried out last year in Bath, to which my hon. Friend the Member for Pudsey (Stuart Andrew) referred, but it was not aimed specifically at finding a cure, and it was funded by an American charity. Will the Minister look into funding for more UK research into the condition? Specifically, will he consider my constituent’s suggestion that a post be created within the Department of Health for a CRPS officer to liaise with specialist clinics around the world to collect, collate and disseminate papers and studies on the condition? My constituent explains that it would prove useful, as it was not until 19 years after the US first stated that guanethidine blocks were ineffective on RSD sufferers that our own specialists came to the same conclusion.

I hope that the Minister will address those matters when he replies, and I hope that this debate will help draw attention to this important issue, so that more people are properly diagnosed and adequately treated. I also hope that I have been able to do justice to the needs of sufferers such as my constituent. May I suggest that the Minister find time at some point in future to meet them, so that he can properly understand the sheer pain and agony that they face?