Childhood Cancers

Jim Shannon Excerpts

Wednesday 25th February 2015 Commons Chamber

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

Skye was born on 5 November 2008. He was a happy, healthy young boy with a wonderful sense of humour who loved his younger brother, Jesse. In July 2013, he became unwell with nausea and vomiting and after many visits to the GP and the failure of medication to help, he was referred to the John Radcliffe in Oxford where he had a CT scan and was diagnosed with a brain tumour. That was 27 August 2013.

Skye was operated on less than a week later and tissue analysis identified the tumour as a grade IV metastatic medulloblastoma, the most commonly occurring paediatric brain tumour. It is an aggressive form of primitive neuroectodermal tumour, which originates in the cerebellum, the part of the brain which controls movement and co-ordination. Although Skye’s tumour had been caught early, it had already metastasised throughout the brain and spinal cord. Surgery was quickly followed by what is known as the Milan protocol: four cycles of chemotherapy over 11 weeks, and a further five weeks of hyper-fractionated radiotherapy. After a four-week period of recovery, Skye had high-dose chemotherapy that confined him to hospital for seven and a half weeks.

He then had four weeks rest at home, and was due to head back to hospital on 14 May 2014 for another round of high-dose thiotepa, but a urinary tract infection delayed the treatment until 28 May, which in hindsight was fortunate. Instead of getting stronger, it became apparent that Skye was getting weaker and an emergency MRI scan on 20 May revealed widespread white matter lesions within his brain and spinal cord, which caused a flurry of correspondence between consultants across the UK and abroad. He was quickly started on high-dose steroids to combat the inflammation.

It was initially diagnosed as radionecrosis, which had been brought on by the combination of therapies that he had had to endure. It was later confirmed as radio-chemo neurotoxicity. His parents were told that that was highly unusual and very rare. We now know that a number of other children have also developed severe neurological side effects and the Milan protocol was quickly withdrawn from use in the UK. He was in a state of paraplegia, with double incontinence, and very poor use of his upper limbs and hands. Skye sadly died at home on 29 August 2014.

I did not meet Skye and I only met his parents some time after his death. They are in the Gallery tonight and have demonstrated to me the most extraordinary bravery in the face of losing their child in this most distressing of ways. They have set up Blue Skye Thinking, a charity that supports research so that all children diagnosed with brain tumours will have a better chance of survival and a better quality of life post-treatment. They continue to support many other parents whose children are suffering from cancer today.

I have taken some time to explain Skye’s story in detail this evening because it illustrates only too well some of the things that are working in childhood cancer treatment at the moment and some of the things that need improvement. The overall story of childhood cancer treatment over the past 30 years is a positive one. Eight in 10 children with cancer survive five years or more, compared with just three in 10 in the 1960s. Short-term survival is also high: fewer than 10% of children die within a year of diagnosis and only 2% die within 30 days.

I congratulate the Government on that. Ministers have demonstrated a clear commitment to fighting cancer and the work and money that has been put into the system to improve cancer survival rates are bearing fruit and proving that the money is being well spent. However, we should not allow these headline statistics, encouraging though they are, to blind us to the fact that, rare though childhood cancer is, it remains the leading cause of death in children and teenagers in the United Kingdom. Childhood cancers account for just 1% of cancer diagnoses in the UK. For research purposes that is a small cohort, but 700 children and young people are diagnosed with a brain tumour every year.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this matter to the House today, and for allowing me to intervene. Cancer Research UK has given me some figures today showing that 60 people are diagnosed with cancer each day in Northern Ireland. When Josh Martin, a young boy at secondary school, went into hospital to have his appendix removed, he was found to have progressive cancer. His family started the Pray for Josh campaign, which is being supported by his family and by the Churches. It has not only given great comfort to the family but helped to highlight the scourge of cancer and the fact that funding for drugs and help for families are very important. One of the organisations that can help is Macmillan Cancer Support. Does the hon. Lady agree that the support of such organisations can be important for families at times like these?

[Nicola Blackwood]

The hon. Gentleman is absolutely right to say that this is about not just Government funding but the way in which funds are given, and charities in particular play an important part. The fundraising that they do through individuals is vital.

As I was saying, 700 children and young people are diagnosed with a brain tumour every year, and that makes it the most common form of cancer affecting children and young people. It is also the most lethal. Brain tumours kill more children and young people than any other cancer—around 160 children a year—but despite being responsible for more than a third of childhood cancer deaths, brain tumours receive only 6% of childhood cancer funding. That funding matters because children’s cancers are biologically very different from adult cancers and treating them effectively requires specifically tailored research and targeted treatment regimes. At the moment, only about 50% of childhood cancers are part of a clinical trial; the remainder are treated using standard treatment guidelines. As Sally and Andrew Hall discovered, that can have serious consequences.

Cancer treatment is harsh at the best of times, and recent studies show that while many survivors of children’s cancers go on to live healthy lives, others face long-term disability and reduced immunity. Radiotherapy, the gold standard in terms of its efficacy in treating cancer, can also have damaging long-term consequences for the developing child. This is particularly true of childhood brain tumour survivors, 60% of whom are left with a life-altering disability. In a few cases, the side effects can be so severe as to be fatal. That is what happened in Skye’s case.

The Milan protocol, under which Skye was treated, was a standard treatment guideline, because as with about 50% of other childhood cancers there is no clinical trial available. It has become clear that there is currently no formal infrastructure in place to collect, record and share data, particularly on adverse effects of treatment, about standard treatment guidelines. I understand that before 2008 the responsibility for collecting and sharing data for clinical trials and for standard treatments fell under the remit of the Children’s Cancer and Leukaemia Group. Subsequently, clinical trials monitoring was tightened, and the CCLG’s “Guide to Clinical Trials” states:

“Clinical trials are very closely monitored by a number of different individuals and organisations. This will include the Chief Investigator…the working group…and relevant staff within the clinical trials unit. An Independent Data Monitoring Committee may also be established to oversee the conduct of the trial. At a national level, there will be an ethics committee and the national regulatory body. If there are any concerns about the conduct of the trial or the results, a trial may be stopped early.”

By contrast, in a letter responding to my concerns about the issue, the National Cancer Intelligence Network, told me that

“all of us in the field accept that (adverse effects in Standard Treatments) is something that should, under ideal circumstances, be a part of the data that we routinely collect. Such data are, however very much more difficult to collect than might be imagined and adverse effects were never part of what the CCRG (Childhood Cancer Research Group) or the CCLG themselves collected outside of a clinical trial. There are no nationally agreed datasets relating to adverse effects and few clinicians systematically collect and collate data of this sort...but it is clearly something that we in the NCIN should be considering.”

I am grateful that the NCIN has recognised that these data should be collected and collated, but I do not think that considering doing it is a sufficiently robust or urgent response to the problem, given the gravity of the consequences if a standard treatment goes wrong.

Clearly, in an ideal world all childhood cancers would be the subject of a full clinical trial and new targeted therapies being developed to reduce the long-term risks, but all of us know the challenges associated with research into childhood cancers, where cohorts of rarer cancers can be incredibly small and the ethical issues are more complex, making recruiting participants more difficult. Obviously, I am going to urge the Government to do whatever they can to fund and encourage more research into childhood cancers. I am going to ask the Minister to consider whether having only 6% of childhood cancer funding going to the biggest killer in childhood cancer represents getting the balance right, and I am going to ask her to maintain investment in the Health Research Authority programme to streamline the regulation and governance processes for clinical research in the NHS.

Oesophageal Cancer

Jim Shannon Excerpts

Monday 23rd February 2015 Commons Chamber

[Mike Weatherley (Hove) (Con)]

In November 2011, I had my dinner as normal, but what was not normal was that it did not settle well and I threw up. I dismissed it as probably a bug of some sort, but then it happened again a few days later. Clearly something was not right, but I did not relish the hassle of getting an appointment to see my doctor. I hate going to see my GP, not because I do not like her, but because the booking system is so frustrating. I put it off for another week or so, but by mid-December 2011, still throwing up occasionally, I decided to battle the booking system, and I went to see my wonderful GP. She referred me to the local NHS hospital, and five weeks later I got an appointment to see a gastroenterologist. The first diagnosis was excess stomach acid, so I was put on antacids and on the list for both an endoscopy and colonoscopy. Unfortunately, the painful probes were inconclusive, as was the follow-up CT scan—nothing was really found other than a severely restrictive oesophagus—but by now eating was becoming a major problem.

There are many people who influence and shape a life, but when someone saves a life—well, that is something very special. Professor Robert Mason is one of those exceptional people. He drew on all his experience, and despite no conclusive evidence, he insisted I came in immediately to have my oesophagus removed. Of course, I argued against this, asking for key-hole surgery or to defer the operation until the summer after more tests, but Professor Mason insisted until I changed my mind and a date was set for 18 April 2012. The full extent of just how serious this was had not fully registered with me. When I was in the pre-op room, I was asked what I had done to prepare in the morning, and I said I had gone to work, and indeed I had. I went into Parliament in the morning and drafted letters to constituents, and at the required time I popped across the river and slipped on the less-than-flattering gown.

It turns out that the surgery is equivalent to a triple heart bypass—the whole oesophagus is removed plus, in my case, a third of the stomach. May I pause here to thank all the doctors and nurses who looked after me at St Thomas’, and especially the nurses in the high dependency unit, who were simply fantastic and a tribute to the NHS? I must also mention a second person who was integral to saving my life—James Gossage, who carried out the surgery along with Professor Mason, and who carried out many post-operative follow-up surgical procedures. Mr Gossage is an exceptionally nice specialist who has a dedication to his profession that is inspirational.

Despite the ordeal, the worst moment was still to come. Until this point no cancer had been detected, but a week after the operation, Professor Mason came in and gave me the confirmation—the biopsy confirmed stage 3 cancer. There is nothing in this world that can prepare someone for the words, “You have cancer.” Sadly, oesophageal cancer is particularly aggressive, and more than half of oesophageal cancer patients die within a year. All sorts of things go through your mind when you hear stats like that, from severe regret about potentially not seeing your kids get married, to even more regret about not being treated earlier—every week really does matter—and many more dark thoughts. A sobering fact is that if Professor Mason had not insisted that the operation should be in April, and if he had agreed to wait until July as I wanted, it seems very likely that I would have been dead by Christmas 2012.

Step up the third person I owe my life to—Andy Gaya, who was in charge of my post-operative treatments. Intensive revolutionary radiotherapy and chemotherapy followed. There were days when I was so exhausted that I could not even reach out for the remote control to change TV channels. Andy Gaya made sure that I was going to be given the best chance of survival. We know that almost certainly some cancer cells were not removed during the surgery, and the treatments, while not pleasant, had to be intensive and push the boundaries in order to be sure that the cancer was treated.

Of course, there is a fourth member of the care team that I owe my life to, and that is my partner Niki. I cannot imagine how difficult it is for anyone going through this experience without someone holding their hand throughout. We throw around stats and theoretical outcomes, but the reality is that there is a whole army of real people behind every medical condition. In my case, there are four people who I can say directly saved my life, plus a huge number of attentive hospital staff, post-operative specialists, district care nurses, GPs and others. My dad often says that being born in the UK is like winning the lottery of life, and he is not wrong. We live in a great country. Having seen the NHS from the inside, I can of course see many areas where it is easy to say that this or that could be done better, and of course it is not perfect, but the reality is that it is an amazing institution that performs incredibly well. That is a result of the amazing people who work in that rightly cherished organisation.

However, I need to mention the opposite side of the spectrum. There are a lot of people out there in society who should hang their heads in shame. Around that time, as a result of my work in Parliament on various issues, I was getting death threats and other hate-filled correspondence, including from many people who simply tweeted with #getcancer. I wanted to reply saying, “Too late—already have it!”, but of course I refrained. The experience served as a stark contrast. One the one hand I was seeing the best of society in the care delivered by really caring people, but then there were the despicable members of society who contributed nothing positive. When I asked the Prime Minister to hold Russia to account for gay rights violations, I got one particularly nasty threat, which the police tracked down to a 24-year-old postgraduate from Manchester who said that she thought it would “be a laugh”. Anyone who supports that kind of hatred should spend a day in a hospital to see just how lucky they are and how great doing good is.

Moving back to cancer, let me take a moment to consider some statistics. The UK is facing an upcoming battle with cancer. It is projected that by 2020, more than half the European population will receive a cancer diagnosis sometime in their life. However, the rates of cancer survival in the UK rank among the worst in Europe. Reasons for that include, but are not limited to, late diagnosis and a lack of treatment options for cancer patients. In fact, a major study of more than 29 European countries found that the survival rates of almost all the most common cancers are worse in Britain than the European average. How will the NHS cope when, within five years, more than half a million people will be diagnosed?

As a cancer survivor—I say “survivor”, but all people who have had the disease know that it can come back at any time, so we are really just in remission—there are a few things that I have learned. Cancer support groups such as Macmillan Cancer Support and the Oesophageal Patients Association are key in providing aid and comfort to those with cancer. Beside providing emotional support to victims of cancer and their families, they often go the extra mile to provide information on matters such as treatment options, local support groups, holistic alternatives to surgery and chemotherapy, and cancer prevention. I was lucky—I had a great partner who helped me through it all, and I did not need to use the support services. I did have one moment in a restaurant when I could not eat and hit a terrible low, and I started reaching for the support line, but for the most part I did not have to fight it on my own. Sadly, many do, and such support groups are vital.

Specific to my cancer is the Oesophageal Patients Association, started by David Kirby back in 1985, which provides support and advice to patients with oesophageal cancer. It is involved in the campaign to increase awareness and in expanding our self-care groups across the UK. My thanks go also to Alan Moss, chairman of Action Against Heartburn, for his input into this speech.

More than 331,000 people are diagnosed with cancer each year in the UK. More than one in four deaths are caused by it, and 161,000 people died of it in 2012. Cancer is primarily a disease of old people—more than 50% of cases occur in those aged 75 or more—but, surprisingly, it is also the most common cause of death in children aged between eight and 14. In those aged between 25 and 49, cancer accounts for 18% of all deaths, and 41% of deaths among those aged between 50 and 74 are related to it.

[Jim Shannon (Strangford) (DUP)]

In Northern Ireland, the mortality rate among women with oesophageal cancer is rising, and the five-year survival rate among men is only 16%. That indicates a need for resources to be directed towards oesophageal cancer throughout the United Kingdom. Does the hon. Gentleman agree that it may be time for a UK-wide strategy to be applied to all four regions?

[Mike Weatherley]

I could not agree more. Early diagnosis is one of the key recommendations that I shall be making.

It is clear that cancer is one of the leading causes of death, but there are risks for survivors as well. It is estimated that 2.5 million people are living with and beyond cancer, and we know that at least one in four cancer survivors face poor health or disability after treatment. Cancer of the oesophagus is the eighth most common type of cancer in the UK among men. Only 40% of those who are diagnosed with it will live for at least one year after the diagnosis, and, tragically, 85% will die within five years. Let me put that into a personal perspective. According to the statistics, if I survive for another four years, I shall be part of a very small minority of just 15%. When people ask why I am leaving Parliament after one term, I reply that one of the reasons is that, given such a high probability, there is a chance that I will not see out another Parliament, and that does make one think about other options.

NHS Mental Health Care

Jim Shannon Excerpts

Wednesday 11th February 2015 Westminster Hall

[Mr Hancock]

I agree entirely. We lucky ones who are privileged and proud to be in this House of Commons must use whatever elements are available to us, whether in speeches here or outside this House, to do more to expose this issue.

I was fortunate because the people I was in contact with were able to put me through a series of different things. They saved my life—I have no doubt whatever about that. I could not stand my life any more and, like so many people, I realised that far too late. I had probably left it six months too late, and because of that my recovery took much longer.

There are others outside the system—people and organisations that try to help. They include Talking Change, which is in my constituency. However, I say to the Minister—through you, Mr Pritchard—that the crisis care service is at breaking point. Services are understaffed and under-resourced; they are overstretched. As for talking therapies, which a lot of people mention and which I have heard the Minister himself praise in the past, 40% of the people who want to use them have to wait more than three months just for an assessment, and that assessment is normally carried out on the telephone. I urge the Minister to try that interview over the telephone. Then, if they are lucky, they will receive some treatment, but one in 10 people wait more than a year to get even the chance to talk about the problems that have driven them to the edge of the abyss, so that they are living in total despair. In addition, a third of the people who are assessed have to wait more than three months to start the therapy.

I ask this Government and whoever is in power after 7 May to really mean what they say about mental health services. There is a crying need for that. When I heard the Deputy Prime Minister talk about mental health services, I thought, “Oh! Maybe we’ll get somewhere and something might happen.” I live in hope, but my experience—having looked into this issue in quite some detail—tells me that the same promises have been made many times during the past 20 years.

I was someone who felt that he could tough out most things, but in the end I had to succumb to the stress and strain I was under, to such an extent that I had no alternative but to seek real help. However, there are literally thousands of people out there who are affected. A quarter of the population of this country will come into contact with mental health problems at some time during their life. Unfortunately, so many of them are disappointed by what they get in the way of treatment from the NHS.

[Jim Shannon (Strangford) (DUP)]

I apologise, Mr Pritchard, for not being here earlier; I was on the Heathrow Express and just could not get here any quicker, unfortunately.

I commend the hon. Gentleman for bringing this matter to the House for consideration. One in five elderly people will suffer from a mental or emotional breakdown. Such breakdowns are more prevalent among women, but the suicide rate among men is three times higher than among women. Given how we are, men, unfortunately, do not tell our stories in the way that we perhaps should.

The hon. Gentleman is putting forward a very strong argument as to why we need to focus within the NHS on those men who have difficulty addressing the issues of depression, anxiety and emotional breakdown. Does he feel that the Government need to have an educational strategy, one that encourages people and helps families and GPs in particular, so that men will discuss these matters with someone who will listen?

[Mr Hancock]

I could not agree more; it would make such sense for that to happen. The hon. Gentleman is dead right. It is vital for people just to have someone outside the family circle to talk to and open up to, and then later they can develop the inner strength to tell people, “Oh, by the way, it happened to me.”

I have no hesitation in believing and saying that we have got to do more, because a lot of the elderly people who the hon. Gentleman just mentioned were in a stressful situation long before they got to that age. I know, because I have met such people, both before my illness and subsequently.

We have to do all we can in this place not only to keep this Minister and this Government focused on this issue but to commit ourselves—as a Parliament—to fight this issue, on and on and on. There should be no neglect of people who suffer from a mental illness. If they receive help early enough, it will save the NHS a fortune, and if the treatment is thought through properly, which might include the NHS talking to people such as myself who have been through the system and seen the good and bad of it, maybe, just maybe, we might start to get things right.

Human Fertilisation and Embryology

Jim Shannon Excerpts

Tuesday 3rd February 2015 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I hold the Minister in the utmost respect, but I feel greatly aggrieved that we are discussing this matter today in the House and that the Government are pushing forward with legislation on a process that I believe is unethical and unproven.

When assessing the reports published by the Human Fertilisation and Embryology Authority, we must take into account the point that the expert panel comprises a small group of scientists convened by the HFEA. Hearing the tone of today’s debate, one could be forgiven for thinking that they represent world scientific opinion. I do not want the House to be hoodwinked into thinking that there is a consensus on this issue, because there certainly is not. In fact, numerous world-leading scientists have been at pains to express their concerns about the proposals.

They include Professor David Keefe of New York university medical centre, himself a pioneer of spindle transfer techniques, who said:

“the application of the…techniques…represent intriguing advances of earlier work, but displays of technical virtuosity should not blind us to potential hazards.”

He explains that his research group moved away from these procedures because

“vexing concerns linger about the safety of mitochondrial replacement”.

He is far from alone. Stem-cell scientist Professor Paul Knoepfler is so concerned that he wrote an open letter to Parliament urging caution on the ground that rushing ahead would damage the reputation of science as a whole. He concluded:

“Overall, the UK would most likely be making an historic mistake by allowing 3-parent technology to proceed in the near future. Please wait on this critical decision for the additional information needed to make a wise choice in the long run.”

Clearly, we need time. Australian expert Professor Justin St John calls for more tests in non-human primates, so that we better understand the possible effects of the techniques. He says:

“As well as analysing foetal development in a non-human primate model, it is essential to analyse offspring to determine that no abnormalities appear at least during early life”.

None of those figures objects to the ethics of the techniques. Their objections are based purely on the science. Lest we think that they are lone voices, it must be remembered that the United States Food and Drug Administration considered the techniques last year and decided that there was not enough preclinical evidence to justify proceeding. I understand that the same body has reopened the debate and has insisted that it will be at least two yeas before it is ready to make a judgment.

In that context, I find it extraordinary that the Government have not waited for the conclusion of the preclinical safety experiments that the HFEA said should be conducted before proceeding.

[Dr McCrea]

In her opening speech the Minister mentioned that the devolved Administrations had been kept abreast of these proposals. I wanted to intervene to ask her whether the regulations will apply in Northern Ireland if they are passed in this House. That is an important question to which an answer is needed.

[Jim Shannon]

I am glad my hon. Friend raised that point.

We cannot have a real debate today without the evidence. New Scientist, typically a champion of progress in all areas of research, warned of a lack of understanding of the links between mitochondria and nuclear DNA. The fact is that the procedures for creating children are so controversial that no other country makes legal provision for them. The Council of Europe convention on biomedicine expressly prohibited them. The fact that experiments recommended by the Human Fertilisation and Embryology Authority itself have not been concluded, written up and peer-reviewed raises extensive safety concerns. Yet we as parliamentarians are asked to make a decision today without having all the clinical evidence before us.

In the preclinical tests that have been carried out, one of the techniques was tried in humans and resulted in three foetal deaths. The obligations in international law, specifically the European directive on clinical trials—

[Robert Flello]

On that point, will the hon. Gentleman give way?

[Jim Shannon]

I am sorry, I cannot give way. I do not have enough time.

The legal opinion of the Labour QC Lord Brennan seemed to suggest that the Government will not bother with clinical trials. That seems extraordinary and will come as a shock to many who spoke in favour in the debate on 1 September. My colleague Lord Morrow spoke to the Northern Ireland Attorney-General about the attempt of the Department of Health to argue in the response to Brennan that these regulations are not caught by the clinical trials directive, on the basis that the intention is to skip clinical trials. The Attorney-General told Lord Morrow that in his opinion the Department of Health is wrong and the regulations do indeed contradict the clinical trials directive. If the regulations go through today, they will contradict international law as well. The same point was made by 44 Members of the European Parliament. I urge the House to vote against the regulations.

--- Later in debate ---

[Mr Speaker]

I thank the hon. Gentleman for his point of order, and I confirm that two hon. Members who wished to speak were unable to do so. I expressed sympathy at the start of the debate for the hon. Member for Enfield, Southgate (Mr Burrowes) who would have preferred a longer allocation of time, but I must operate within the rules and procedures of the House. It is also fair to emphasise that 12 Back-Bench Members representing different viewpoints were called. That is the factual answer.

The hon. Member for Stoke-on-Trent South (Robert Flello) invites my view as to the propriety or otherwise of this matter, and I can say only that we have operated entirely in accordance with procedure. There has been no impropriety and nothing disorderly. I understand that some people are discontented, but I hope people will not take offence if I say that to a degree, I think there will always be people who are discontented. It is difficult to get unanimity on these matters, either on the merits of the issue or on the procedure. However, I think we have done our best, and people have done their best today to help each other, which is worthy of note.

[Jim Shannon]

Further to that point of order, Mr Speaker. It is obviously of great concern to many Members of the House that only 90 minutes was allocated for that debate, and you outlined at the beginning that the Minister could control that. What advice would you give to Back Benchers who want to ensure that in future, if there are debates about such enormous change for the whole United Kingdom, we can ensure a three-hour debate rather than a 90-minute debate?

[Mr Speaker]

I am always happy to offer my advice to the hon. Gentleman, but whether he takes it or not is entirely up to him. The short answer is twofold. The hon. Gentleman is an assiduous attender of debates—indeed, I have often wondered if he sleeps here overnight because he is invariably present in the Chamber at all times and for every Adjournment debate. First, he should always turn up at business questions when he can raise such matters with the Leader of the House. Secondly, if he feels that Back Benchers should have a greater say in the allocation of time on matters of this kind, he might want to join forces with other hon. Members who are championing the creation of a House business committee. That was to be introduced by the third year of this Parliament, but I think it momentarily slipped the Government’s memory and therefore has not happened. It might happen in the next Parliament, however, and I have a feeling that the hon. Gentleman might be a cheerleader for it. We will leave it there.

Hormone Replacement Therapy Implant

Jim Shannon Excerpts

Wednesday 28th January 2015 Commons Chamber

[Tracey Crouch (Chatham and Aylesford) (Con)]

I am very pleased to have the opportunity this evening to speak on behalf of not only my constituents but many women across the country on the issue of commissioning and funding the hormone replacement therapy implant.

While I appreciate that for the overwhelming majority of women experiencing the menopause alternative HRT treatments are perfectly effective in addressing their symptoms, for a small number this is not the case, and the impact is significant. This issue was first brought to my attention by a group of my constituents who were being treated with the implant from the well woman clinic at Lordswood community healthy living centre in my constituency. In March 2014, after Medway clinical commissioning group announced that it would no longer be providing funding for the insertion of HRT implants, they sent me a copy of a petition signed by 200 women, one of whom has since sadly passed away.

After receiving the petition, I met a number of the individuals concerned to discuss why the alternative treatments were inadequate. They described the effect on their quality of life of no longer having access to the implant, and the problems that they had experienced with other formats of the therapy not addressing their menopausal symptoms.

The purpose of today’s debate is not to advocate access to the implant for all women going through the menopause. I am aware that many women either go through the menopause without any major problems or can sufficiently negate their symptoms with the cheaper licensed alternatives such as patches and gels. However, for a selection of women, the HRT implant provides benefits not addressed by alternative forms of the therapy.

A small percentage of women are severely affected by this issue. They include women with a history of breast cancer in the family. HRT has been thought to increase the risk of breast cancer, especially when used over long periods of time. However, the implant is seen as a preferable option for those seeking HRT treatment as there is a reduced risk, because it is absorbed directly into the blood and bypasses the liver. They also include women who experience some of the more severe symptoms. Symptoms such as joint pain and depression, which cannot be eased by the other licensed formats of the therapy, can also be improved by the implant. These more severe symptoms can have a huge impact on the quality of daily life and on well-being, affecting factors such as employment and mental health, which have cost and health implications of their own, both to the economy and to the individual. The small percentage of women severely affected by this issue also includes women who suffer from early menopause. This means that they are likely to suffer symptoms over a protracted period, and they have also been seen to have much better results from the implant.

The personal experience of my constituent Sarah clearly highlights the reality and severity of the effects involved, as well as the benefits that the implant can provide. Sarah King is suffering early menopause. She is a lovely young married mum with three young boys. For most of her life she had been healthy, active and happy, but in recent years she suffered a number of accumulating health problems. These included joint pain—to the point of hospitalisation—skin problems, depression, headaches and lethargy. After a number of years of various treatments and no real improvement, she was sent for a simple blood test which revealed extremely low hormone levels, indicating that she was suffering an early menopause.

Owing to a family history of breast cancer, Sarah was first offered the opportunity to try the HRT implants. Within a short time, all her poor health issues had gone. When the HRT implant service stopped, she tried the HRT patches and then the gel, but neither gave her the same result that she had experienced with the implants. Her health deteriorated to the point that she had to quit her full-time job as a teaching assistant. She started researching on the internet and discovered that the Chelsea and Westminster hospital in London had a specialist menopause clinic and HRT implant service.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this delicate issue to the House for our consideration. My understanding is that this hormone replacement therapy is available only in certain locations across the United Kingdom. Does she agree that we need consistency of availability, from Aberdeen to London and from Cardiff to Belfast, and that it should be available to everyone?

[Tracey Crouch]

I am grateful to the hon. Gentleman for his intervention. The implant is no longer uniformly available nationally. The decisions being taken locally are affecting people who might not be able to travel to London, for example. I shall come to that later in my speech.

Sarah contacted Medway CCG to ask whether it would object to her being referred to the Chelsea and Westminster hospital as an NHS patient. The CCG told her that there was no objection and that the patient’s well-being was its priority. Following that consultation, Sarah had her first appointment at the Chelsea and Westminster on Monday 12 January this year. She was accompanied by her husband, and he was able to tell the medical practitioner who interviewed Sarah what it had been like before she received HRT implants at the Lordswood clinic, what it had been like after she had the implants, and what it had been like to see her health deteriorate again when that treatment was no longer available. He said:

“I just want my happy, healthy Sarah back.”

The medical practitioner that Sarah saw said she was an ideal candidate for the HRT implant and did not hesitate in giving it to her during that first visit. Within a week Sarah says she is already feeling much better, and she has now set up a website dedicated to supporting women suffering severe menopausal symptoms. I am sure that Sarah is just one woman of many who have found themselves in this predicament, but not all have had such positive outcomes.

I would like to take this opportunity to thank the constituents of mine, especially Val Weeden, who have tirelessly researched and campaigned on this issue. They have actively searched for solutions and continuously shared their information with me. They have constantly supported each other through what has clearly been a very tough situation for many. It is extremely unlikely that this issue is unique to my constituency; I am sure that many women across the country and beyond who suffer from severe symptoms no longer have access to this potentially life-enhancing treatment because of localised commissioning structures. They may not all come across information for Chelsea and Westminster’s specialised service, and women in the far north or far south of the country who do may struggle to travel to London, at a potentially extortionate cost. Although I appreciate that this is not a cost to be incurred by the health care system, it is one that I would like the Minister to consider today.

After some research into this issue, I identified that on 5 July 2011 MSD, the only licensed provider of the Estradiol implant here in the UK, issued a letter to GPs stating that it was to cease manufacture of the product. It stated:

“the company’s global decision to discontinue the manufacturing of Estradiol was made after consideration of commercial factors and the fact that therapeutic alternatives are available in most countries. The decision is not related to a product quality or safety issue”.

For most women, this issue of cost has no impact on their treatment and well-being, but the 200 women in my constituency, and, I imagine, many others beyond for whom the alternative forms of HRT are not suitable, have been left with a void in their health care. The UK now has no licensed provider for a treatment that enables sufferers to live a normal, high-quality, day-to-day existence.

I recognise that the lack of a licensed provider is not necessarily a problem, as GPs are able to prescribe unlicensed medicines if they feel there is a special need and an unlicensed provider of the product exists in the UK. However, in my constituency this process has not adequately represented the women for whom this treatment is so important, because when our CCG made the announcement in March 2014 that it would no longer be providing funding, the justification was that 200 women was far too great a number to be treated with an unlicensed medicine when licensed alternatives were available.

Although I disagree with the idea that an increased demand for treatment somehow de-legitimises its suitability, I am aware of the potential concerns about licensing. However, just because a product is unlicensed, it does not necessarily mean that it is unsafe, as has been highlighted in MSD’s notice of cessation. In fact, in this case the unlicensed treatments being provided have been widely used across the country and the world. The only reason they are currently unlicensed is that the license holder deemed its provision economically unviable.

That brings me to my conclusion. My constituents found the Chelsea and Westminster clinic through independent research on the internet. That is not a good enough procedure to ensure that women have access to the vital services they need in our health care system. I, for one, recognise the positive changes that this Government have made to our health care system—namely the emphasis on the importance of well-being. I also believe that, for the most part, our doctors are best placed to commission our local services, but this case is an example of where the economics of devolved commissioning are perhaps having a negative impact on specialist services.

The Chelsea and Westminster clinic is proof that there is clearly a recognised medical need for the HRT implant to be made available, as a uniquely successful treatment, to a significant minority of women. I therefore ask the Minister to commit to take steps to ensure that our shared vision of our health care system is a reality for all who use it, including these women. I urge the Minister to take steps to make sure that this specialised service is available to all women who may need it, in an appropriate location, and that appropriate referrals take place. To follow any actions that he may take on this issue, will he make a commitment to publish new guidance or write to GPs to inform them about best practice for their patients in this position.

Looking forward, we also need to understand early menopause better and how it may be affecting women from an earlier age. I urge the Minister to engage with national organisations such as the Daisy Network, which was set up for this age group to see how best we can do that. We also need more research into severe menopausal symptoms and treatment for them. Will the Minister commit to look at this whole area of concern?

Finally, I thank Val, Sarah and the rest of my constituents who have campaigned tirelessly on this issue. Their support has enabled me to raise this issue in the House not just for them but for many, many women across the nation in similar circumstances.

National Health Service

Jim Shannon Excerpts

Wednesday 21st January 2015 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to contribute to the debate. I thank the Opposition for bringing the matter to the House for consideration. The one thing that unites the whole House is a love of our health service. We have different opinions on either side of the House, but we are united by the need for an NHS that delivers services for our constituents.

It is important to look at the regional issues affecting our devolved Administrations, but a nationwide strategy for the overarching issues facing the whole of the UK is of paramount importance. My concerns relate to barriers to accessibility and the quality of NHS provision. I shall focus on the availability of vaccinations and the issue of nationwide strategies. Sometimes we should not be parochial about the NHS, but rather consider nationwide strategies that can be put into practice across the entire United Kingdom of Great Britain and Northern Ireland.

With the undeniable strain on NHS resources and their ability to provide services efficiently, quickly and to the high standard that we strive to meet, in the past few days the Northern Ireland Assembly announced an extra £203 million for the Department of Health, Social Services and Public Safety. That will alleviate some of the pressure, but there are continuing financial demands to provide the new drugs and new technologies that are vital for the provision of essential services. It is a great pity that as a result of Sinn Fein’s delay in agreeing welfare reform measures, fines were imposed, impacting upon the moneys available.

As other hon. Members have mentioned, mental health services are struggling to deliver urgent care, particularly for younger people. Some 17% of young people have been sectioned under mental health legislation since 2010. That is an indication of the issues that permeate our whole society. For those of us of a certain vintage and those of us who are younger, the issues of mental health are clear.

Cancer care is a subject close to my heart. One in every two of us is expected to have cancer. The devolved Administration in Northern Ireland have been maintaining funding for clinical trials that will benefit the whole of the United Kingdom, but it is a challenge to find the money for that. The statistics from Cancer Research UK emphasise the prevalence of the disease: every two minutes someone in the UK is diagnosed with cancer. The NHS must deliver the necessary care.

The Northern Ireland Budget has made promising provision for health. The demand for health care is greater in Northern Ireland than in the rest of the United Kingdom. How we deliver that care, how we manage our services, and what preventive strategies are in place are all crucial aspects. The problems affecting A and E departments in Northern Ireland are as acute as those in some parts of the mainland. Education campaigns in GP surgeries and on television and radio could encourage people to use A and E departments appropriately and to consider using the other systems that are in place.

In Northern Ireland we seek to increase the number of patients participating in clinical trials, but we need to maintain the funding for that and meet the costs involved, among the many other demands on the NHS budget.

I know that the Minister is usually responsive on the issue of cancer drugs, so in his summing up perhaps he will explain why six cancer drugs have been reduced, restricted or withdrawn and how that fits in with the strategy across the whole United Kingdom.

I want to put on record my thanks to our medical practitioners and nurses for the hard work that they do. Will the Minister consider increasing the number of agency staff on a contract basis to assist in alleviating the pressures on NHS services, or will he consider some sort of scheme whereby graduates are brought in to help them gain experience and training? This would not only benefit young people who need experience, but would put more staff on hospital wards and in A and Es, and could be financed from the existing budget.

Autism: Diagnosis of Children, Hull

Jim Shannon Excerpts

Monday 5th January 2015 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

First, I would like to thank you, Mr Speaker, for selecting for the Adjournment debate this evening the important subject of the unacceptable length of time families in Hull are having to wait for a diagnosis of autism for their children. It is an issue I have grown increasingly concerned about over the course of the past year.

I was first contacted in spring 2014 by constituents about how long they were having to wait for a diagnosis. The National Institute of Health and Clinical Excellence produced a report in 2011, “Autism: Recognition, referral and diagnosis of children and young people on the autism spectrum”, which states that

“the autism diagnostic assessment”

should start

“within 3 months of the referral”.

The three-month target has since been reinforced by a NICE quality standard on autism, but the service level agreement set by Hull NHS clinical commissioning group is for children to be assessed within 20 weeks of referral, and what is actually happening is very different: families are waiting for well over 12 months, and even for 18 months, to get the diagnosis.

I am particularly concerned about the role of Hull clinical commissioning group, whose job it is to make sure that health services are available and delivered to the local population in a timely manner. I believe the CCG is failing to do that in relation to diagnosing children with autism. It appears not to have a plan on how to tackle the backlog and is also failing to communicate with parents about how long they will really have to wait for a diagnosis. I hope that tonight the Minister will be able to reassure me and my constituents that he will take action on the growing problem in Hull—and, I believe, in other parts of the country.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to the House for consideration. She has eloquently outlined the position in Hull. Across Northern Ireland, we have had a 67% increase in the number of individuals with autism and we have 1,300 children waiting to be assessed. The problems in Hull are replicated across the whole United Kingdom. One way in which the issue can be highlighted is, of course, through education in schools and hospitals, but the recognition of Dr Cassidy, chief executive of Autism Northern Ireland, in the new year honours list was another step in raising the profile of those with autism across the whole United Kingdom, but especially in Northern Ireland.

[Diana Johnson]

I am grateful to the hon. Gentleman for that intervention, which sets the context very well.

Let me tell the House about the experience of three families in my constituency and what the delays actually mean to families and children in Hull. Jayden was three years old when his family first contacted me. His mum, dad and grandmother were desperate to make sure that Jayden received the help he needed. His parents had tried to arrange an assessment with the autism panel in Hull. Without that diagnosis from the panel, Jayden’s parents could not access the specific local services that he needs. They were told that even if they obtained a private diagnosis from a doctor, it would not be acceptable.

Jayden’s parents have found the whole situation very difficult, and I know that Jayden’s grandmother, Mrs Spivey, has really tried hard to fight for her grandson to get the help he needs. Despite initially being told that it would take 20 weeks for a diagnosis to be made, Jayden’s parents were eventually told that in fact it would take 57 weeks. Jayden is now four years old; he still has no diagnosis and he has no speech. His family wanted him to attend the Early Bird programme, an early intervention scheme, but this is available only to children who have received a diagnosis, and Jayden is still waiting.

Thomas is 11 years old. His parents contacted me in June 2014. They believe that Thomas is on the autistic spectrum and have been trying for several months to obtain support. Thomas is high functioning and the long delay is adding to his anxiety. Thomas was referred to the autism panel in October 2013 and his parents were advised by child and adolescent mental health services that, owing to the severity of his needs, he would be seen within 12 weeks. His parents have now been told that he is on the February 2015 list to start his assessment—15 months since the referral. This is what his parents say:

“Thomas is suffering, he is an intelligent, beautiful little boy whose world is collapsing. He is confused by the behaviours he displays and cannot understand the responses which other people present. He is lonely and desperately in need of support. Likewise we are a family in crisis. We feel that Thomas deserves to know why there is insufficient funding to provide the diagnosis he so desperately needs. A diagnosis would bring him support and access to services which he needs to function.”

Thomas’s parents have had little contact from the CCG. They too were initially told that the waiting time was 20 weeks.

Isaac is three years old, and he suffers from severe social and communication difficulties. His parents requested an assessment for autism/sensory processing disorder He was referred to the autism panel in January 2014. His parents were initially told that he would be assessed within 20 weeks, but they have now been told that it will be Easter 2015 before he is assessed. Isaac’s parents were particularly concerned about applying for schools for him in September without having a formal diagnosis in place.

These families in Hull are clear examples of unacceptable and lengthy delays in a diagnosis of autism causing real stress, hardship and worry to families, as well as to the children themselves who are missing out on services and help.

Sickle Cell Anaemia

Jim Shannon Excerpts

Wednesday 10th December 2014 Westminster Hall

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

It is a pleasure to debate this matter under your chairmanship, Mr Owen. Sickle cell anaemia affects an estimated 12,000 to 15,000 people in the UK and around 400 people in the west midlands, where my constituency lies. The associated condition, thalassaemia, affects around 1,000 people, although hundreds of thousands more in our country carry the trait for these conditions. They mainly, but not exclusively, affect the Afro-Caribbean community.

Sickle cell anaemia is the most common genetically inherited condition in the UK. Roughly one baby every day is born with the condition in our country. There is no known cure and for those who have it, the symptoms can vary from relatively mild, infrequent pain to much more serious episodes of crisis, frequent hospital admissions, strokes, often in very young people, organ damage and reduced life span. At the heart of the debate about treatment for the condition lies one simple question: why, with all the progress that has been made—there has been progress—is there still such variability in the treatment for sufferers, leading to enormous and debilitating pain, unnecessary and expensive hospital admissions and damaging consequences for the families of those who suffer from sickle cell anaemia?

Some hospitals and some specialist care units do a fantastic job, but patients with sickle cell anaemia do not want islands of excellence. They want an excellent system that offers high quality integrated care that minimises hospital admissions, manages pain treatment and enhances quality of life wherever they live in the country. The experience of patients, as told to me and to others, is that we are still a long way from having a system in place that delivers that standard of care wherever people live.

I pay tribute to the work of the Wolverhampton sickle cell care and social activity centre based in Bilston in my constituency and to the other patient-led groups around the country, to the Sickle Cell Society, which is the national organisation that speaks up for sufferers, and to the work of the all-party group on sickle cell and thalassaemia, which is chaired by my hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott).

[Jim Shannon (Strangford) (DUP)]

The right hon. Gentleman and the House know that people are living longer. On average, people live into their 80s or thereabouts, but life expectancy for those with sickle cell anaemia is 40 to 50, which is better than it was. Can the Minister and the NHS do more with private pharmaceutical companies to try to find a method of prolonging their life? It may not be as good as 80, but it could certainly better than 40 to 50.

[Mr McFadden]

That is a very good point. Shortened life span is one effect of the condition, and there is certainly more to do on the research and treatment fronts.

Organisations such as those I mentioned are doing a tremendous job in explaining what the condition means for sufferers, calling for more attention to it, and pressing for better training for NHS staff and a more rounded way of providing treatment. I have had extensive contact over the past seven years or so with the Wolverhampton sickle cell care group. It provides hugely needed and valuable support for sufferers, which may be anything from helping patients to deal with different governmental agencies and helping their families through crises when they have to be admitted to hospital, to a broader advocacy role. The group praises many NHS staff locally, but their biggest and most consistent complaint is about lack of understanding of the condition among GPs, A and E staff and some other NHS staff, leading to pain and delay for sufferers and bad consequences for their families.

The group told me about Sharon, a single parent of two children under the age of 10 who has full sickle cell disease and is in frequent crisis. Every time she is admitted to hospital, there is a desperate scramble among friends and relatives to ensure care for her children. There is no proper system in place to support her children, and the stress on her and her family is enormous. She discharges herself from hospital early, often before proper treatment is complete, because she has to look after her children, so the whole pattern soon begins again. Is there not a better way to manage Sharon’s pain than through frequent hospital admissions and incomplete treatment? If she does have to be admitted, should there not be a better system of support for her children?

The group also told me about a local man in his 40s who has gone for years without treatment for bleeding at the back of his eyes as a result of sickle cell disease. His sight is now at risk, but earlier treatment might have brought about a different outcome.

The Sickle Cell Society told me about a patient who was costing the NHS a fortune through repeated hospital admissions, exacerbated by the fact that her children slept in the one bed in her flat and she did not have a bed. Eventually, the charity was able to help her to buy her a bed and that made a huge difference. The cost of her hospital admissions could have paid for a hundred beds.

We will never reach the stage where no patient with sickle cell anaemia needs to be admitted to hospital, but getting the care right has the potential to reduce hospital admissions, making the condition easier to manage for the patient and saving the NHS a considerable amount of money. The fact that there is no cure does not mean that good professional care cannot make a difference.

That brings me to the national picture and the peer review of specialist care carried out by the west midlands quality review service and the UK Forum on Haemoglobin Disorders, which was published last year. The review visited 29 hospitals and reviewed the care provided. The aim of the care standards that have been developed is quite simple: there should be specialist haemoglobinopathy teams based in hospitals, backed up by a local haemoglobinopathy team. In other words, the system should have both the expertise to offer the best care and properly connect primary and hospital care. That is a good aim, but the reality is much more varied and therein is one of main causes of frustration for sickle cell disease sufferers and the organisations that speak out for them.

The peer review process found instances of excellent joined-up practice. It found committed staff going the extra mile to deliver the best care, but it also found overstretch, patchiness, breakdowns in care pathways and an unacceptable degree of variability across the country. The report says:

“Cooperation between acute and community nursing teams was sometimes very good but this was not universal. The availability of social work and psychology support was variable”.

It continued:

“In many teams there were inadequate numbers of nursing staff for the number of patients, or in some cases no acute nurse specialist at all. Even where these posts were in place they often had a very high workload which included inappropriate tasks”

such as

“filling in benefit forms…with very poor cover arrangements.”

The peer review process also found that, particularly in non-haematology parts of the system, patients

“perceived they were viewed as ‘second class’ haematology patients.”

That point about how sickle cell patients view their own experience is critical. They often feel that they are treated either with a lack of understanding or, even worse, sometimes with suspicion when they try to explain their condition or arrive at A and E in need of urgent pain relief. Lack of understanding can lead not only to poor care, but to patients feeling they have not been treated with dignity and that their need for treatment is not respected.

I do not need to remind the Minister that the very principle of the NHS means there should be no such thing as first-class and second-class patients. I do not want to see anyone treated as, or feeling as though they have been treated as, a second-class citizen. The whole basis of the NHS, paid for collectively with treatment on the basis of need, is that everyone is a first-class citizen. If there are sufferers of a genetically inherited condition who do not feel they are being treated as such, that is not acceptable and something we should take very seriously indeed.

Another issue identified by the peer review process is poor quality of data. That leaves us unsure about the number of sufferers and unsure, beyond emergency admissions, about the resources devoted to treating the condition. How can we ensure that there is the right treatment if we do not know how many sufferers there are or where they are? What is the Minister doing to improve those clearly identifiable data problems?

The peer review made a number of good and important recommendations about access to specialist care, staffing levels, training, psychological support and managing the important transition between paediatric and adult care. Those issues are absolutely central to the experience of sickle cell patients. Can the Minister tell us this morning what is happening to those peer review recommendations? Will he undertake to go through them not in a general way, but point by point, and to give a progress report to the House if not today, then soon and in writing? Such a report would be welcomed by sufferers and would ensure that there was follow-up on these important recommendations.

Then there is, for patients, the basic cost of living with the condition. To live with sickle cell is to live with pain, and that often means frequent prescriptions. For some patients, the cost can be prohibitive. This is not just a matter of money, but of behaviour. If people do not use their pain relief efficiently because they cannot afford more, it can affect their condition. I appreciate the cost pressures on the NHS, but will the Minister agree to commission a departmental analysis on whether free prescriptions for sickle cell sufferers would cost money or lead to net savings because they would reduce avoidable hospital admissions?

What of how sickle cell care is to be delivered in the future? NHS England is currently the body responsible for commissioning care for rare diseases. That is sensible, because sufferers might be concentrated in different parts of the country and sometimes there may be few sufferers. However, a review is taking place into how that will be done in the future, the results of which are due next year. There are three possible models: continuing with national commissioning, co-commissioning with clinical commissioning groups locally, or leaving it all to CCGs. Given that concern already exists about the large variation in the quality of treatment, knowledge of the condition and the priority given to it, sickle cell organisations fear that a move to only local CCG commissioning will exacerbate the problems. Can the Minister ensure that the way treatment is organised in future is in line with the central aim of the peer review exercise—to deal with the variability of treatment issue—rather than its being organised in such a way as to make it more difficult? I repeat that our aim should be a system that makes the best the norm, rather than balkanising care and creating a lottery, depending on where sufferers live.

Sickle cell anaemia is an issue that deserves more attention than it has received and a greater priority in the delivery of high-quality health care. In some ways, it is less about knowing what the best care looks like and more about ensuring that it is delivered to the highest standard throughout the country, regardless of where patients live. The condition also requires some smart, joined-up thinking between different agencies. Repeated hospital admissions because of a lack of a bed to sleep on is not a smart way to deal with a condition such as sickle cell.

Sufferers have to put up with a life of pain, but good treatment, the right information and the right lifestyle can make an enormous difference. That treatment, information and help vary so much is not acceptable. Dignity and respect are essential for all NHS patients: sickle cell patients feeling they do not always get that should be a concern for us all. It is time we ensured that the best care is available to all sufferers, delivered by a system that understands the condition, fully respects the patient and allows sufferers to live as full a life as possible. I hope the Minister can respond to the issues I have raised today in a way that makes that more likely. On the issues for which he does not have immediate answers, I hope he will go back to the Department and press his officials to make sure the changes we know are needed happen.

Patient Safety and Medical Innovation

Jim Shannon Excerpts

Tuesday 9th December 2014 Commons Chamber

[George Freeman]

I am sure my hon. Friend is right. She makes an excellent point about the nature of the question having an impact on the answer one gets. I have repeated the concerns because they bear repetition and are important, and I want to signal that I am taking them seriously.

I want to set the scene in terms of the Government’s commitment to patient safety, the context in which innovative medicines are being developed, and the changes in the sector that are challenging some of the traditional methods of drug development. I will then address some of the specific points that my hon. Friends the Members for Totnes and for Cambridge have made and say something about the Government’s position on the Bill.

The Government’s response to the Mid Staffordshire NHS Foundation Trust public inquiry, led by Sir Robert Francis, “Hard Truths: The Journey to Putting Patients First”, demonstrated beyond any doubt, I hope, the Government’s absolute commitment to creating a new culture of openness, compassion and accountability and a renewed focus on patient safety right at the heart of the NHS.

The truth is that the NHS is one of the safest health care systems in the world. I am delighted to report that, in the recent Commonwealth Fund report comparing the US health care system with those of 11 other nations, the UK came top. However, there is always scope to improve health care standards universally and to reduce avoidable harm further. That is why the Secretary of State set the ambition this June, at the launch of the Sign up to Safety campaign, to reduce avoidable harm by half and save 6,000 lives over the next three years.

We have put patient safety right at the heart of the Government’s agenda for health. For that reason, I am delighted that the Government are actively supporting the Bill on patient safety sponsored by my hon. Friend the Member for Stafford (Jeremy Lefroy). The Bill has several important provisions on the use of data to drive safety across the system and to ensure transparency and accountability in health outcomes.

Why do we need to look at mechanisms for promoting innovation? My hon. Friend the Member for Totnes was kind enough to signal her awareness that the Government—particularly me, as the first Minister for life sciences—have taken an active role in trying to promote it. The reason is that we face a challenge in the field of drug discovery and development, as well as in medical technology generally. There is a challenge and an opportunity.

The challenge is that the more we know about disease, genetics and data—the datasets at our disposal in the NHS, and the history of drug reactions and the way in which patients respond to diseases differently—the more we realise that patients respond to the same disease or the same drug in different ways, and that those ways can often be predicted. These insights are beginning to change the way in which drugs are developed.

Increasingly, we do not need the one-size-fits-all, blockbuster drugs that we have traditionally expected the industry to bring us after long, slow, protracted and increasingly expensive clinical trials and randomised, double-blind trials. Of course, those trials have a strong part to play in our system, but the more we know about the nature of disease and the extraordinary breakthroughs that our biomedical and life sciences sector is making, the more the agenda shifts to designing around patients, as well as around tissues, data and genomics. That is why the Government are so committed to shifting our policy landscape to support the extraordinary role that our NHS can play globally. It is a uniquely well positioned, integrated national health care system, with extraordinary leadership in genomics and informatics, which the Government are actively supporting.

My hon. Friend made the point that the randomised, double-blind trial has given medicine great service in the 20th century, and I agree. As we move further into the 21st century and see the transformational power of new technologies, it is equally true that the system of expecting the industry to go away and spend 10 to 15 years, and an average of £1.5 billion, to develop a new drug—many of them fail in late-stage clinical trials, because of some toxic side effect in one patient or a few small number of patients—is leading to a crisis in the industry and in the pipeline for new drugs and new treatments, and to patients increasingly suffering because we cannot give them innovative medicines.

Part of the agenda for this Government and all western Governments is to look at how to accelerate the way in which our health systems support research and to bring innovative medicines, as well as devices, diagnostics and other innovations, to benefit patients more quickly.

[Jim Shannon (Strangford) (DUP)]

I apologise for not being in the Chamber at the beginning of the debate, Madam Deputy Speaker, but I did not realise that the business had moved on so fast. In the university in Belfast, we have developed some great partnerships in relation to finding new drugs. Nearby Belfast city hospital works together in partnership with the university to address the issue of innovation for new drugs and to address how best to utilise them and make them available. I know that the Minister is aware of that, but does he recognise that such a partnership—with Queen’s university, financed by big business, alongside the NHS in the form of Belfast city hospital—is a precedent for how to innovate?

[George Freeman]

The hon. Gentleman makes an important point. I want to take this opportunity to pay tribute to the work being done in that cluster at Queen’s. I am delighted to say that I will be coming in the new year to support it and to show, as the UK Minister, that there are great clusters in Scotland, Northern Ireland and Wales. I very much look forward to that visit.

The truth is that the landscape is changing. Part of the challenge that we all face is to find ways to accelerate earlier access to innovative treatments for patients, and earlier access for those developing innovative drugs, devices and diagnostics to our health system, so that we can more quickly design innovations that are more targeted and personalised. We are seeing the first genuinely personalised cancer therapies and drugs that, in the unfortunate event that one is diagnosed with cancer, can be designed around one’s genetic profile. I was at a seminar on that development this morning. It is changing the landscape of drug development. We are keen to ensure that we benefit from it in the UK and that we use every mechanism in the NHS to support it.

Breast Cancer

Jim Shannon Excerpts

Tuesday 25th November 2014 Commons Chamber

[Annette Brooke]

I thank my hon. Friend, and yes, it is so important. We have the good news that life expectancy is increasing under these circumstances, but that makes it all the more important to think about the quality of those extra years.

There are far fewer clinical nurse specialists for secondary breast cancer. There is no definitive figure, but estimates from Breast Cancer Care suggest that there may be no more than 20 clinical nurse specialists who have expertise or experience of working with secondary breast cancer. This is despite there being approximately 36,000 people living with a secondary breast cancer diagnosis. Given the results of the cancer patient experience survey, and anecdotal evidence from those living with secondary breast cancer, we can assume that many secondary breast cancer patients are not having as positive an experience in their care as those with a primary diagnosis. Unfortunately, we do not know for certain as the cancer patient experience survey does not include a specific stand-alone question on secondary breast cancer. It is essential that the survey continues, so could it not include a question on secondary breast cancer?

Breast Cancer Care ran a taskforce on secondary breast cancer in 2006. Its final report, published in 2008, highlighted a number of issues, other than those already mentioned, that patients with secondary breast cancer face. Those include multi-disciplinary teams not discussing secondary breast cancer routinely, the information needs of patients not being met, and patients not being assessed for their psychological or social needs following a diagnosis—the point that my hon. Friend has just made. Unfortunately, it seems that little progress has been made in the six years since that report was released.

Underpinning the problems with care and treatment for secondary breast cancer—and key to much of this debate—is the lack of data and information about patients diagnosed and living with the disease. As I have already mentioned, we still do not have an accurate figure for the number of people who have been diagnosed with secondary breast cancer, only an estimate. We do not have enough quantitative evidence about the experiences of secondary breast cancer patients.

I had the opportunity to meet some women at a recent Breast Cancer Care event to mark secondary breast cancer awareness day last month, and they told me that the care they received was often inadequate, and certainly not at the same standard as the care that followed their primary breast cancer diagnosis. Some typical comments from patients with secondary breast cancer include:

“A diagnosis of secondary breast cancer changes your life completely—nothing is ever the same again”;

“When you’re diagnosed with secondary breast cancer you can have no idea of just how far and in how many different ways it’s going to change your life. So many people don’t understand what a secondary diagnosis means”;

“So many people tell me how great I look, or tell me that I can beat it with chemo and surgery. They don’t understand that I am in pain and I can’t be cured”;

“The pain I had, from when I was diagnosed, basically it was excruciating. But the pain had started slowly and I’d always had aching pains in my chest area. To the point that it was so bad that I couldn’t hold a glass in my hand or put a handbag on my shoulder. I couldn’t touch my head, I couldn’t dress myself. I couldn’t sleep. I couldn’t turn on my side. And also I couldn’t breathe properly”;

“One thing that does distress me is the lack of continuity in my care and I think that if I had one person who was with me through it all that would help a lot”;

and

“The strange thing about this whole disease is that they don’t really prepare you at all. It’s almost finding out as you go along”.

I think that those comments highlight how much progress we have made on primary breast cancer, with all the advice and support that is given to patients very early on. I want to use this debate to highlight not only that progress, but the need to address those issues for secondary breast cancer, some of which have been faced with primary breast cancer.

Although the comments I have just read out highlight the human story, they are not enough to help us find the solutions. Without firm data and evidence, it is impossible to understand fully the impact of secondary breast cancer. We do not really know enough about the types of treatment that patients are receiving or how the quality of a patient’s life changes over time. That lack of information makes it virtually impossible for commissioners to be able to plan and commission services properly that meet local needs. That, in turn, makes it much harder for clinical nurse specialists with the right knowledge and skills to be recruited, particularly when NHS budgets are under pressure. The result is that patients continue to miss out on the vital support and care they need.

As I mentioned earlier, the Government have committed to improving the collection of data on secondary breast cancer, making it mandatory for the NHS in England. When my colleagues and I met the Prime Minister, he agreed that adequate data collection was required. Following that meeting, in January 2011, the Department of Health published its national cancer strategy, “Improving Outcomes”, which committed to collecting data on secondary breast cancer for the first time, stating:

“During 2011/12 we will pilot the collection of data on recurrence/metastasis on patients with breast cancer with the aim of undertaking full collection from April 2012.”

[Jim Shannon (Strangford) (DUP)]

I thank the right hon. Lady for giving way and apologise for not being here for the beginning of her speech; I was at a do down below and could not get here in time. She has just outlined the importance of collecting and then using data to respond to those who have breast cancer. She will also be aware that Breast Cancer Care has campaigned strongly to ensure that data are collected in England. I understand that it hopes to have a similar initiative in Scotland, Wales and, hopefully, Northern Ireland. She refers to the NHS in England. Does she share my opinion that the data should be collected for the whole of the UK so that we can agree a strategy that all four regions of the United Kingdom of Great Britain and Northern Ireland can benefit from?

[Annette Brooke]

I thank the hon. Gentleman for his intervention. I hope that the Minister has taken that point on board, because it is really important. Although data are being collected, they are not being received by various groups, and the purpose of this debate is to address that.

The pilot was run by the National Cancer Intelligence Network in collaboration with Breast Cancer Care, and it involved 15 breast cancer units across England. The pilot report, published in March 2012, identified 598 patients with recurrent or metastatic breast cancer. Of those, only 53% were recorded as being referred to a clinical nurse specialist, palliative care nurse specialist or other key worker at the time of diagnosis. That is despite the NICE quality standards and the evidence in the cancer patient experience survey of the benefit to patients of a named nurse.

--- Later in debate ---

[Jane Ellison]

I certainly pay tribute to all those who are trying to drive awareness of this issue. There are a number of very important campaigns. Prevention is so important; for example, it was good that it was right at the heart of the recent NHS “Five Year Forward View”. There is a lot more to do, and I have recently had discussions with some of the breast cancer charities about how we use their reach and undoubted public credibility, which is enormous, to raise awareness more about some of the things that people can do on the prevention front, as well as about their important work on care and drugs. I join my hon. Friend in paying tribute to those campaigners.

The NHS is treating more people with cancer than ever, as I have said. Survival rates for breast cancer are improving, with more than 85% of women with breast cancer in England and Wales now living for more than five years. The work that all the charities have done in that regard is really important. They have all made significant contributions, but we know that more needs to be done, and that is the focus of this debate. We need to catch breast cancers earlier, and to avoid the risk of secondary breast cancers. We also need to improve the detection and treatment of secondary breast cancer, as my right hon. Friend has highlighted.

My right hon. Friend spoke very movingly about pain and its management. I am sure that we all agree that our NHS doctors and nurses do everything that they can to alleviate pain. In fact, it was good to see from the 2014 cancer patient experience survey that only 1% of patients reported that they did not think that hospital staff did everything they could to control their pain. Indeed, 86% of patients—the highest level in the four surveys so far—reported that staff did everything they could to control their pain. She is right to say that referral to specialist palliative care services can provide more by way of effective pain relief. The NHS must do what it can to ensure that women with secondary breast cancer have access to the right services. She is also right to highlight the room for improvement on that.

On the patient experience for women with secondary breast cancer, the results of the 2014 cancer patient experience survey show improvements in many areas, with 89% of all patients reporting that their care was either excellent or very good. As my right hon. Friend said, there are two specific references to secondary breast cancer in the NICE quality standard. The first states that people who develop it should

“have their treatment and care discussed by the multidisciplinary team”,

and the second states that people with recurrent or advanced breast cancer

“have access to a ‘key worker’, who is a clinical nurse specialist whose role is to provide continuity of care and support”—

she mentioned that—

“offer referral to psychological services if required and liaise with other healthcare professionals, including the GP and specialist palliative care services.”

NICE clinical guidelines represent best practice, and we expect commissioners and clinicians to take them into account when making decisions, including on the provision of cancer nurse specialists. On the whole, breast cancer patients reported a more positive experience than many other cancer patients, and 93% were given the name of a clinical nurse specialist. My right hon. Friend is right to highlight the fact that we are not doing as well for patients with secondary cancer or a recurrence of cancer—those patients reported a worse experience and were less likely to have a clinical nurse specialist. NHS England is working with NHS Improving Quality, Macmillan Cancer Support and strategic clinical networks to improve the cancer patient experience and spread good practice across hospitals providing cancer care. That includes support from a clinical nurse specialist for those with secondary breast cancer.

[Jim Shannon]

The Minister is good in debates such as this and we always appreciate her response. One thing that is not always mentioned is the work done by pharmaceutical companies and their investigations to find and perfect new drugs to combat cancer. Current TV programmes often show people saying, “We’re almost there” when speaking about a cure for cancer—well, we are halfway there anyway. Together with pharmaceutical companies, universities such as Queen’s university in Belfast do fantastic work to find new drugs to address cancer and many other things. Sometimes that point is missed in debates such as this, so perhaps this is an occasion to get that on the record.

[Jane Ellison]

I pay tribute to the hon. Gentleman who is always present in health debates and makes an important contribution. If he were to secure a debate on research and clinical trials, I would be delighted to respond. He is right to say that that topic is sometimes a bit unsung, and it is enormously hope-giving for people to hear what is in the pipeline. He is right to highlight that issue, and perhaps we could explore it in a bit more detail on another occasion.

I alluded earlier to work that is taking place to bring everybody up to the best standard. That includes pairing highly rated cancer trusts with those that have potential to improve, regional events for commissioners to consider how patient experience survey results inform commissioning decisions, and the publication of guidance on using survey data to drive improvement. The survey is used in very hands-on ways, and in previous debates I have been impressed at the extent to which data are used right at the front line to say, “This is what really good looks like”, or to highlight where services can be improved by reference to those who are doing things well.

The need to improve is recognised by the NHS. In his forward to the 2014 survey report, Sean Duffy, NHS England’s national clinical director for cancer, recognised the importance of clinical nurse specialists and the need to be particularly sensitive to the needs of patients with a recurrence of cancer. We all recognise the picture that my right hon. Friend painted of people telling others of their diagnosis and what they say and the enormity of the news they are trying to convey not really being understood. Sean Duffy also highlighted the need for sensitivity when the cancer has not responded to treatment as had been hoped.

I understand that NHS England has no plans to discontinue the cancer patient experience survey. I have drawn on it a number of times when responding to debates, and it has been extremely valuable to front-line clinicians for understanding where excellence is being practised. I am keen and have stressed to NHS England on a number of occasions how much Members of the House appreciate the survey and feel that it informs our debates and the knowledge of our constituents.

The survey is overseen by the cancer patient experience advisory group, chaired by Neil Churchill, NHS England’s director of patient experience. Suggestions for amendments or additions to the survey can be addressed to that group. I will obviously draw this debate to the attention of NHS England, and the all-party group on breast cancer will continue to engage with it on ways that the survey could be improved or amended.



My right hon. Friend mentioned the need to improve detection and treatment of people with secondary breast cancer. We need to have good data about those affected. As she said, in the 2011 cancer outcomes strategy we committed to pilot the collection of data about metastatic disease, which had previously not been recorded. In March 2012, a report on the pilot data collection project was published. The pilot programme included data from 15 units and enabled the National Cancer Intelligence Network to identify deficits in the information recorded for those patients. Lessons learned from the pilot have now been applied to a country-wide programme. Since April 2012, all breast units have been required to submit information on all patients diagnosed with a new recurrence or with metastatic disease through the cancer waiting times process.

Analysis of the cancer waiting times data, based on referrals to hospital between 1 April 2012 and March 2013, shows that 7,176 patients were diagnosed or treated for recurrent breast cancer in England. However, we know we need to improve the quality of the data to ensure that we are getting the full picture. There are significant discrepancies between trusts and the analysis will need to be updated with more recent cancer waiting times data to ensure that the figures are robust. The NCIN, Macmillan and the Public Health England knowledge and intelligence teams are working collaboratively on a system to detect patients with recurrent breast cancer by looking at treatment patterns. Results from that collaborative work should be available in 2015. I know it is a source of frustration that they have not been available to date, but that work is at least ongoing. I will pursue that point further with Public Health England after the debate. We have regular meetings. I will of course raise the issue and ensure we keep the House up to date.

On the national peer review programme, I would like to assure my right hon. Friend that NHS England is currently reviewing the national cancer peer review programme with a view to considering how its success might be extended into other new areas of specialised commissioning. Regardless of the outcome of the review, cancer peer review will continue to play a critical part in any broader peer review programme the NHS might introduce. Further details will be published shortly as part of the wider review into specialist commissioning.

The clinical commissioning group outcomes indicator set is not designed for use as an accountability tool. For that, NHS England uses the CCG assurance delivery dashboard—I apologise for the jargon, which, unfortunately, is a feature of these debates—to hold CCGs to account. “Everyone Counts: Planning for Patients 2014/15-2018/19” was used by NHS England to identify the relevant indicators for reporting in the CCG dashboard. In addition, as new data have come on line throughout 2013-14, as well as feedback received on the indicators that are currently being used, NHS England has reviewed whether there is potential to make improvements in 2014-15. The cancer indicators used in the CCG assurance dashboard are based on cancer waiting times. NHS England is continually looking to improve the delivery dashboard. I know the all-party group will continue to engage with that process, as will the charity that supports it and the other charities.

As well as improving patient experience, we want to ensure that women are informed about the risks of metastatic disease so it can be diagnosed early. NHS England breast cancer clinical reference group is determined to ensure that everything possible is done to reduce the risk of secondary breast cancer. It is preparing a service specification for the provision of breast cancer services in England. NHS England knows that the information currently given to patients on the risk of secondary breast cancer is variable and frequently inadequate. That was brought to life for all of us in the Chamber by the deeply moving extracts from the comments of sufferers that were read out by my right hon. Friend. I do not think that any of us could have been unaffected by them. The clinical reference group’s service specification will require that all patients should have an end of primary treatment consultation, which will include advice on signs and symptoms that might indicate secondary breast cancer. That information needs to be delivered together with an holistic needs assessment as part of a recovery package. The evidence that this has been done will have to be recorded in the records of every breast cancer patient.

Touching briefly on research, the National Institute for Health Research is enabling patients to take part in trials of new treatments for metastatic breast cancer through its clinical research network.

As we all know, early diagnosis is key. Alongside the work to increase awareness, the Government have committed £450 million to achieve earlier diagnosis and the associated improved cancer survival rates. On breast cancer specifically, in February and March, we ran a Be Clear on Cancer campaign to increase awareness of breast cancer in women over 70. The proportion of women spontaneously mentioning breast cancer rose significantly, as did confidence in people’s knowledge of signs and symptoms of breast cancer. The campaign was well recognised, with many agreeing that the advertising would prompt them to talk to somebody close to them about the symptoms to watch out for. As well as increasing awareness, the campaign appears to have resulted in a large increase in referrals to secondary care in the target age group. The analysis, although only interim, suggests a significant increase in the number of women over 70 self-referring for breast screening. We are encouraged by that.

In addition, Public Health England is funding the biggest randomised control trial in the world and extending the NHS breast screening programme to women in the 47 to 49 age group and the 71 to 73 age group. As the trial is studying the effects of screening on breast cancer mortality rates over time, the results will not be known until the early 2020s, but it is an important and extensive study.

To conclude, I thank my right hon. Friend once again for bringing this debate to the House, the manner in which she introduced it and her important work on this subject throughout her parliamentary career, and I thank my other hon. Friends who have supported her and who also take a great interest in this subject. She is right to point out that fundamentally there is a message hope: so great is our progress that we can now compare of where we want to be with secondary breast cancer with where we increasingly are with breast cancer. However, she also rightly reminds us that more progress needs to be made.

I shall draw this debate to the attention of the national clinical director, Sean Duffy, and make him aware of the concern expressed in the House on this subject. I reassure my right hon. Friend of the Government’s commitment to reducing the incidence of secondary breast cancer and to improving outcomes for everyone diagnosed with this terrible disease. I offer a message of hope and improvement to all of them.

Question put and agreed to.