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?

Children’s Heart Surgery

Stuart Andrew Excerpts

Wednesday 12th June 2013 Commons Chamber

[Mr Hunt]

I think we have been having a constructive discussion about an extremely difficult issue, in which I hope I have spoken for the whole House in saying that there are things that we need to learn on all sides, as the earliest signs went back as far as 1984 and still, in 2013, we have not been able to make the progress we should. It is important that we maintain that bipartisan approach, because at the end of this process there will be difficult decisions to make and we need to maintain public confidence that we are thinking about this in a non-party-political way.

[Stuart Andrew (Pudsey) (Con)]

I think I can hear the cheers in Leeds as I speak. May I put on the record my thanks to the IRP and to my right hon. Friend the Secretary of State for listening to our concerns in a very difficult situation? These findings clearly vindicate what we have been saying all along, but as we move forward will he agree to meet me and clinicians to maximise confidence in the future review? Will he assure us that co-location of services, accessibility and patient experience are paramount and that all units will have the same scrutiny as the one in Leeds has undergone? May I invite him to visit the unit in Leeds, so that he can meet the patients, families and staff with whom it has been my privilege to work?

[Mr Hunt]

I congratulate my hon. Friend on campaigning for children’s heart surgery in Leeds in an exemplary way, and he deserves huge credit for the responsible approach he has taken throughout. I would be delighted to meet him and clinicians from Leeds. Many things need to be learned, but his points about the importance of the patient experience, of clinical outcomes and of an impartial process in site selection, which is at the heart of the concerns people had about this process, are ones we need to reflect on very hard indeed.

Oral Answers to Questions

Stuart Andrew Excerpts

Tuesday 11th June 2013 Commons Chamber

[Dr Poulter]

The hon. Gentleman is absolutely right to highlight that there has, in the past, sometimes been unacceptable variation in the quality of post-natal care. That is why we are increasing the number of midwives and have done so by nearly 1,400, and why we are putting money and effort into increasing the number of health visitors, who play a vital role in supporting mums, babies and families in securing that important bond, and in supporting mums so that they get the right help when they suffer from post-natal depression.

[Stuart Andrew (Pudsey) (Con)]

3. What plans he has for the future of children’s heart surgery provision in Yorkshire and the Humber.

[The Secretary of State for Health (Mr Jeremy Hunt)]

I asked the Independent Reconfiguration Panel to undertake a full review of the “Safe and Sustainable” review of children’s congenital heart services. I have received and am currently considering that advice, and will make my decision known shortly—perhaps very shortly.

[Stuart Andrew]

I am grateful for that answer. Will my right hon. Friend accept that the Leeds unit has undergone the greatest scrutiny of any of the units included in the review, and has met all the standards required? Will he therefore assure patients, families and staff that both he and NHS England have every confidence in the performance and standards of the Leeds unit? If we are to have informed choices on the future of heart units, surely all units must be subject to the same scrutiny.

[Mr Hunt]

First, I want to congratulate my hon. Friend on the sustained campaigning that he has done for that children’s heart unit, and on the very responsible way that he has conducted himself in what has been an extremely difficult campaign for the people of Leeds. I have full confidence in children’s heart surgery at Leeds; I know that the Leeds unit does an excellent job. He will understand, as I do, that when there are safety concerns, they have to be investigated, but I am delighted that those issues have been resolved, and that surgery is continuing.

Heart Surgery (Leeds)

Stuart Andrew Excerpts

Monday 15th April 2013 Commons Chamber

[Stuart Andrew (Pudsey) (Con)]

(Urgent Question): To ask my right hon. Friend the Secretary of State for Health if he will make a statement on Leeds children’s heart surgery unit.

[The Secretary of State for Health (Mr Jeremy Hunt)]

Following the deaths of 30 to 35 children at the Bristol royal infirmary between 1991 and 1995 and the subsequent inquiry, children’s heart surgery is rightly the subject of great public concern.

With respect to Leeds general infirmary, there are three issues that the House will want to be updated on: was it right to suspend children’s heart services at Leeds on 28 March; was the decision handled in the best way possible; and, given his public comments, is it appropriate for Professor Sir Roger Boyle to have a continuing role in the Safe and Sustainable review of children’s heart surgery?

First, was the right decision made? The answer is categorically yes. The principle of “first do no harm” must run through the very heart of the NHS. If there is evidence that patient safety is at risk, it is absolutely right that the NHS acts quickly and decisively to prevent harm to patients. However difficult or controversial, we must never repeat the mistakes made at both Mid Staffs and Bristol, where arguments over the quality of data prevented action that could have saved patients’ lives.

Secondly, was the decision handled properly? On 26 and 27 March, Sir Bruce Keogh, NHS England’s medical director, was given a range of critical information about the quality of care at Leeds: statistical data that indicated higher than expected mortality rates; concerns about staffing rotas; and further concerns from parents and a national charity about the way the most complex cases were referred. With the agreement of the LGI, Sir Bruce took the entirely appropriate decision to suspend children’s heart surgery while further investigations were made. The families were informed on the day the decision was taken to suspend services, 28 March.

On 29 March—Good Friday—the day that decision became public, I spoke with the right hon. Member for Leeds Central (Hilary Benn) and my hon. Friends the Members for Pudsey (Stuart Andrew) and for Leeds North West (Greg Mulholland) to inform them of the situation. My conclusion is that, on the basis of the information available to him, Sir Bruce behaved entirely properly. He was also right to authorise the restarting of surgery from 10 April for low-risk patients on the basis of more complete data and assurances from the trust.

The third question is whether, in the light of his recent comments, Professor Sir Roger Boyle can have a continuing role in the Safe and Sustainable process. Sir Roger is one of our leading heart surgeons. He did the right thing in informing Sir Bruce of his concerns over Leeds’ mortality data. He has also played an important role as an adviser to the Safe and Sustainable review of children’s heart services. However, it is the view of Sir Bruce Keogh, with which I concur fully, that Sir Roger’s comments to the media on 11 April could be seen as prejudging any future conclusions of that review. It is therefore right that Sir Roger plays no further role in its deliberations.

--- Later in debate ---

[Stuart Andrew]

I am grateful to my right hon. Friend for his answers. No one would disagree with the point that information that is provided about the safety of a unit should be investigated. However, the quality of the information and the source of the complaints raise serious questions about the proportionality of the action that was taken and, more importantly, about the motives of the complainants. Sir Roger Boyle was a key adviser to the Safe and Sustainable review, which proposed an illogical outcome for northern England. His recent actions and comments surely prove that the decision to close the Leeds unit was predetermined.

Sir Roger leaked data that were unverified to argue for the suspension of surgery—an action that was described as “appalling” by their author. The information was inaccurate and, when corrected, demonstrated that the Leeds unit was safe. In fact, it showed that it is in a similar position to the units at Guy’s and Alder Hey. Why did Sir Roger not recommend the suspension of surgery at those units? Is it because those are the ones that he and the Safe and Sustainable review recommended as designated centres?

Furthermore, on Friday, despite detailed scrutiny that proved that Leeds was safe, Sir Roger claimed that it was on the edge of acceptability and that he would not send his daughter there. Those comments demonstrated a clear bias against Leeds and were irresponsible in respect of parents whose children are facing surgery. In addition, one of the whistleblowers has been identified as a surgeon from the Newcastle unit, which is another example of vested interests.

The suspension of surgery and Sir Roger’s comments have caused huge anxiety and concern among patients and staff, and have hurt the reputation of the hospital, which it has taken years to build. I therefore ask the following questions of my right hon. Friend.

How can we have faith in the Safe and Sustainable review, given that its key adviser has behaved in such an appalling and biased manner? Despite the fact that he will no longer take any part in the review, the decisions remain. Does this matter not prove that Sir Roger acted in a predetermined manner? Is it not vital to put the patient’s interests first, rather than NHS politics? Does my right hon. Friend agree that Leeds has been treated disproportionately when compared with other units that have similar figures? Is he aware that there are reports of surgeons being anxious about providing data for fear of reprisals? Is there not an urgent need for the Independent Reconfiguration Panel to report to resolve the uncertainty that exists across the country with regard to children’s heart surgery? Is it not time to give serious consideration to the proposal that both Leeds and Newcastle should stay open, which is supported by clinicians and patients as it is in their best interests? Finally, will he pay tribute to the staff and patients at Leeds, who have acted with great dignity in the face of hostile criticism?

[Mr Hunt]

I do pay tribute to the staff at Leeds and to the families of patients. I recognise that this is an issue of huge concern. As my hon. Friend rightly says, they have behaved with great dignity in a difficult situation. I also pay tribute to him for the responsible way in which he has behaved in this difficult situation, as have many Leeds MPs.

My hon. Friend will understand, given that the NHS nationally was provided with data that suggested that mortality could be up to 2.75 times greater at that unit and given that there was a potentially busy holiday weekend ahead, when it did not know how complex the cases would be and when there were locums on the staff rota who may or may not have been up to the standard of the permanent staff, that Professor Sir Bruce Keogh had genuine concerns that led to his decision. But I hope the fact that surgery was restarted on 10 April will assuage my hon. Friend’s worry that the initial decision was linked to the Safe and Sustainable review—it was not; it was a concern about patient safety and because that concern has been addressed, surgery has restarted.

There were, however, issues about the quality of the data, which at least in part was because the hospital was not supplying data properly in the way it needed to. That was one reason why the mortality data were not as accurate and good as they should have been. Although I entirely agree that patient safety must always come first, and not NHS or national politics or whatever it may be, that also means that sometimes difficult decisions have to be taken. What happened at Mid Staffs, where we had a big argument about data that meant nothing happened for too long, and what happened originally at Bristol, where up to 35 children may have lost their lives, is a warning about the dangers of inaction. On this occasion, I think that overall the NHS got it right.

Suicide Prevention

Stuart Andrew Excerpts

Wednesday 6th February 2013 Commons Chamber

[Stuart Andrew (Pudsey) (Con)]

I am grateful for the opportunity to take part in the debate. I pay tribute to the hon. Member for South Antrim (Dr McCrea) and all Democratic Unionist party Members for bringing this important debate to the Floor of the House. I am sure they were tempted to debate many other issues, but it is important that we discuss suicide prevention, which is a crucial but difficult issue.

Yesterday, I spoke of some of the most difficult times in my life. I was lucky to have the support of a loving family and great friends, but many unfortunately do not have that. Before being elected, I worked in the hospice movement. In that time, I got to know a lot of the patients well, and, sadly, death became a norm—I did not want to use that word, but I am sure hon. Members understand what I am getting at. Bereavement is always difficult, but suicide bereavement is a different type of bereavement altogether.

Sadly, I say that from personal experience. When I was in the sixth form, I remember vividly walking in and a friend saying to me, “Have you heard about that boy?”—I will not mention his name. He had taken his own life because he had been bullied at school. I remember all the students sitting in the common room in complete and utter shock. All I could think about were the questions going around in my head. What could I have done? Why did I not spot that he was in that difficult place? If I am honest, those questions still haunt me today. In more recent times—since I have been elected as a Member of Parliament—there was the very sad case in my constituency of a father who killed his entire family and then himself.

The suicides I have seen and experienced have had a tremendous effect on the people who are left behind. That is why the debate is important, but more importantly we should act and not just talk about suicide. We must also start right at the beginning and change people’s attitudes. How many times have hon. Members been on a train that has been delayed because somebody has taken their life, and the instinct of some passengers is to moan about the delay, forgetting that somebody has lost their life?

Hon. Members have spoken a lot about attitudes to mental health. I am very proud of the fact that a lot of work has been done in the Chamber to address that. It is a good start to try and take away that stigma. I pay particular tribute to my hon. Friend the Member for Broxbourne (Mr Walker) and the hon. Member for North Durham (Mr Jones), who have spoken openly about their own personal battles. As hon. Members have said, however, suicide is a much wider subject than just mental health; it can be about finance, careers or family breakdown. It is important that we address all those issues, which is why I welcome the fact that the suicide prevention strategy is in place. It is important that the strategy is not just a piece of paper; it has to be backed up by action, and it is good to see that happening. Crucially, it is partly about identifying the risks.

[Andrew Stephenson (Pendle) (Con)]

I agree with what my hon. Friend is saying. In January, suicide-proof fencing was installed at a multi-storey car park in Nelson in my constituency, from which eight people have died in the past 10 years and a further 18 people have had to be talked down by police. I raised this issue on the Floor of the House in October 2010 in an Adjournment debate led by the hon. Member for Bridgend (Mrs Moon), yet it still took the car park owners years to act. In addition to what my hon. Friend is saying, does he agree that businesses have a key role to play in identifying risks?

[Stuart Andrew]

I am grateful to my hon. Friend for that intervention. He is absolutely right: we need to do everything we can—talking to individuals themselves or lessening the risks—to identify those areas. A lot of work has been done in the prison system to try to improve cells to reduce risks. Businesses also have an important role to play.

It is important that the strategy targets specific groups who we know may be vulnerable. Targeting young people will be important, because we want to change attitudes in the future. We also have to look at why so many young men are committing suicide. We have been talking about mental health, but let us face it: men are not very good at talking, and that is part of the problem. As we move into the digital age and we all spend so much time on our computers, being used to talking with others will lessen over time. I fear that we will have a generation who will be even worse than the current one in talking about their problems.

Improving access to “talking therapies”, the strategy’s four-year plan, and expanding it to all ages and different groups, is important. From my own experience, I know that we need to ensure that there is as much work on school intervention as possible to deal with bullying and violence. We must allow people to talk about the threats they feel, whether they are sexual abuse or bullying at home. We also have to remove barriers for people who are disabled, or who have mental health or other long-term conditions. We want to make them feel that they can play a full role in our society and do not become isolated.

Areas that require emphasis have been highlighted by a constituent of mine. I pay tribute to Mike Bush. He and I are unlikely friends. He describes himself as “red socialist”, but he and I have become very good friends and I have a huge amount of respect for him. He has done tremendous work in this field and is an active member of the all-party parliamentary group on suicide and self-harm prevention. On many occasions, he has highlighted the importance of working with bereaved families. I welcome the fact that the strategy gives greater prominence to measures that support those families; being there and helping them to cope with a family member whom they are worried might commit suicide, and helping them cope with the aftermath of someone who has committed suicide.

Getting better information through the research that is being offered can only be a good thing, but the emphasis must be on support, and I completely agree with the hon. Member for Bridgend that we need to ensure good national provision. We need to ensure that suicide prevention measures are available in every part of our country. In particular, bereavement support needs a suicide angle to it, because it really is very different. In my time at the hospice, I saw how fragmented bereavement services were around the country, but specific suicide bereavement support is even more fragmented.

I hope that as the strategy develops we will continue to work with the many wonderful organisations we have in this country, many of which have been mentioned today, such as the Samaritans. The APPG is a great start, bringing together a coalition of organisations with a wealth of experience, but it is also important that we listen to family groups that have been through this dreadful experience. What makes Martin House children’s hospice such a wonderful organisation is that it is parent-led. The parents describe the care they need, and that is why it can offer such wonderful support. In the same way, the best strategy for dealing with suicide will come from those families who have experienced it.

We need action on cyber-bullying. Bullying has existed in schools for many years, but it has taken on a different form now. People can be bullied at school, but when they get home it continues through the social networking sites and the computers in their bedrooms. In a sense, these children and young people are suffering from a silent bully. The suicide websites have been touched on. We must do more to close them down completely.

I hope that we can offer further training for organisations and—perhaps—the police in helping them to deliver that bad news. I have had several constituents tell me that they almost felt sorry for the police officer delivering the news because it was so difficult. It is important that these organisations be aware of the wealth of information out there. I am glad that the “Help is at Hand” document has been mentioned, because it is not used enough.

In conclusion, suicide is tragic in every sense: the loneliness of the person doing it, the long bereavement for those left behind, the guilt they suffer for years after and the great risk that they themselves might go on to commit suicide. It is crucial that we face this risk. This debate is just the start: let us now address and act on it.