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?

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.