Young-onset Parkinson’s Disease

Jim Shannon Excerpts

Monday 6th March 2017 Commons Chamber

[Nick Thomas-Symonds (Torfaen) (Lab)]

During the 2015 general election campaign, I attended a concert in my constituency in aid of Parkinson’s. It was organised by a constituent of mine, Len Burbidge, and I want to pay tribute to the tremendous work that Len does on this issue locally. That night, I signed a pledge to raise awareness of Parkinson’s in this House, should I be elected, and I have sought to do that in parliamentary debates and as a member of the all-party group on Parkinson’s. I pay tribute to the group’s chair, my hon. Friend the Member for Bridgend (Mrs Moon), for the work that she does, and to the work that is done for the group in the other place by Baroness Gale of Blaenrhondda.

I am delighted to have secured the debate this evening, particularly because it is now 200 years since Dr James Parkinson published his famous 1817 essay “An Essay on the Shaking Palsy”. Some 60 years later, a French doctor, Jean-Martin Charcot, spoke about “la maladie de Parkinson”, from which we have coined the term “Parkinson’s disease” to describe the condition. According to figures from Parkinson’s UK, some 120,000 people are affected by the condition in the UK today. We know about the three principal symptoms—the tremor, the muscle stiffness and the slowness of movement—but unfortunately there is still no cure 200 years later.

When I talk about the number of people affected by the condition, I must point out that the data available on those with Parkinson’s are perhaps not as accurate as we would like. We know that several thousand people of working age have the condition. I want to pay tribute to Gaynor Edwards from the charity Spotlight YOPD for the work that she has done to raise the profile of this issue. She has guesstimated that there are 6,500 people affected who are under the age of 50, but it would be a significant step forward if we could accurately estimate not only the prevalence of Parkinson’s in the population as a whole, but the number of people of working age who have the condition. I would be grateful to the Minister for some assurance that we can look at how the data are collected.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this matter to the House. We have 4,000 sufferers in Northern Ireland, one in 20 of whom was diagnosed with Parkinson’s when they were under the age of 60—in other words, still of working age. He spoke about the importance of finding a cure, but in order to do so, we need a research programme. Does he agree that the Government should be placing more emphasis on early diagnosis and finding a cure?

[Nick Thomas-Symonds]

I entirely agree with the hon. Gentleman.

I have been provided with a number of emails by the charity Spotlight YOPD, and I have permission to use them in this debate. Interestingly, one of those contributions is from someone with Parkinson’s who is based in Edinburgh. They say:

“My main concern is the lack of clinical trials to participate in, compared to many other conditions, there’s hardly anything at all going on for PD.”

I will talk in a moment about the care that people receive, but I agree with the hon. Gentleman that research into a cure is absolutely central to this debate.

I want to talk about a constituent of mine, Hayley Huxley, to whom I have been speaking in recent weeks. She was diagnosed with Parkinson’s at the age of 25. She is now 30 and has two young children. I want to reflect on what she set out in an email to me, because it is indicative of what people go through. She says:

“It all started when I was 24. I went back to work after maternity leave on my first child and noticed I couldn’t use my right hand properly to write. I went to the doctors 3 times and they just put it down to carrying a car seat, pulled muscle, etc. The 4th time I went I got referred to a specialist and went for tests”,

and she was diagnosed at 25.

Hayley speaks movingly of the challenges that she has faced, such as working part time due to fatigue and having to

“fight my way through the PIP assessments”.

In the end, she was able to get the appropriate number of points. She also speaks about access to a neurologist, saying that she has not seen one since she was diagnosed five years ago. Indeed, she has not seen her Parkinson’s nurse since July 2015. She speaks about managing her medication, going through childbirth without taking medication for eight months, the rigidity in her right arm and leg, and the restless leg that she gets.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 7th February 2017 Commons Chamber

[David Mowat]

I congratulate my hon. Friend on his work for the British Polio Fellowship, which is a good charity that makes a real difference. He is right that the condition is difficult to diagnose; the symptoms are vague and there is no definitive test. NICE is updating its best practice, and the British Polio Fellowship has developed guidelines that we all need to use to build GP awareness of the condition.

[Jim Shannon (Strangford) (DUP)]

As the Minister said, there is no specific test for diagnosing PPS, so will he outline what information is offered to medical professionals to diagnose and treat the syndrome to ensure that the symptoms are correctly collated and not put down to other untestable issues, such as fibromyalgia?

[David Mowat]

As I said, the symptoms are vague and there is no definitive test. As my hon. Friend the Member for Gillingham and Rainham (Rehman Chishti) pointed out, awareness of the condition among GPs is not as high as it could be, so we need to do more, with the NICE guidelines and the work of the British Polio Fellowship, on GP education, training and information.

Duodopa

Jim Shannon Excerpts

Tuesday 31st January 2017 Westminster Hall

[Mr Virendra Sharma (Ealing, Southall) (Lab)]

I beg to move,

That this House has considered access to Duodopa.

It is a pleasure to serve under your chairmanship, Sir Edward. I thank the Minister for sparing the time to respond to this limited debate this afternoon. The subject is a serious one, especially for those people who contend with advanced Parkinson’s disease and have so few effective medications on which they can rely to give them some control over their symptoms.

For the benefit of anyone who might not be familiar with the condition, I will briefly explain what Parkinson’s is. Parkinson’s disease is a degenerative neurological disorder. It affects all aspects of daily living, including talking, swallowing and writing. People with the condition often find it hard to move freely, but there are also other issues, such as pain, depression, dementia, hallucinations and continence problems. The severity of symptoms can fluctuate from day to day, and people can experience rapid changes in functionality in the course of a day.

There is no cure, but there is a small selection of treatments suitable for a few people in the advanced stages of the condition. Those treatments include the drug Duodopa. I was involved in the campaign to allow routine prescribing of Duodopa without recourse to special, case-by-case requests by clinicians. Since 2015, the treatment has been available to those people in England who are deemed suitable.

I called today’s debate to discuss the new proposal by the National Institute for Health and Care Excellence to advise clinicians not to offer Duodopa at any stage. That recommendation is being made despite the scarcity of treatment options and the proven effectiveness of Duodopa. I accept that the Minister has no control over NICE recommendations, but I wish to highlight some anomalies.

First, in clinical practice, Duodopa is used only when all other interventions have been shown to be ineffective, or clinically unsuitable options. Despite that, evidence presented in the draft guideline compares Duodopa to deep brain stimulation, which is another treatment for advanced Parkinson’s, and to the best medical treatment, which for advanced Parkinson’s is often apomorphine.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter to Westminster Hall for consideration. I hope that the Minister will be able to respond positively. As a result of the background information that I got in relation to this issue, I would like to ask this question: does he agree that the evidence from clinicians and experts that NICE made a pivotal mistake in comparing Duodopa to treatments such as deep brain stimulation means that the institute needs to step back now and withdraw the proposal before even more anxiety and turmoil is caused to people with Parkinson’s?

[Mr Sharma]

I thank the hon. Gentleman for that intervention. I will come to that point later and respond to it.

That incorrectly assumes that the populations given the treatments are the same, which is not the case, as UK clinicians recommend Duodopa only if their patient cannot have deep brain stimulation or apomorphine. It is therefore illogical to say that deep brain stimulation or apomorphine is better value for money, as they are not suitable for direct comparison. As one person with Parkinson’s explained,

“I was at the end of the road before I had the Duodopa. I was literally wheeled into hospital to have the pump fitted and the Duodopa titrated, and about a week later I came out walking. I responded very quickly and noticed a huge improvement in my quality of life, and I always live in dread that it will be taken away.”

In these circumstances, I very much hope that something can be done to bring NICE to the mainstream view on the subject.

Stem Cell Transplants

Jim Shannon Excerpts

Tuesday 24th January 2017 Commons Chamber

[Mark Tami]

I totally agree with the hon. Lady. We are talking about a very small number of people but, for them, it is their only chance after they relapse.

Despite everything we know, NHS England confirmed in December 2016 that it would not routinely fund second stem cell transplants. In effect, it decided that these people’s lives were not worth the money.

One of those people is Sasha Jones, a 34-year-old mother of two from Greenwich, who, in March 2015, was given the devastating news that she had acute myeloid leukaemia, a type of blood cancer. Over the next few months, she had rounds of chemotherapy and her first stem cell transplant. It was not without its difficulties, but by the beginning of October 2015, she was well enough to go home to her husband, Lloyd, and their two young children, aged just 13 and eight at the time. In August 2016, she was told that the blood cancer had come back, but by this time NHS England had decided that it would not routinely commission second transplants for patients in Sasha’s situation, despite such treatment being recommended by her doctor.

Doctors tried to get Sasha a second transplant by going through the individual funding request route, which allows NHS England to fund treatment for patients on an individual basis if they are deemed to be an exceptional case, but what is an exceptional case, how is that decided and, importantly, how long does it take to be considered? It has to be done at a time when the family and patient are dealing with the devastating news that their illness has not been cured but has come back, so they have to cope with that while also going through this process.

Sasha’s request was turned down and she has effectively been left with no alternative treatment. She now has two choices: find the money to pay for the second transplant herself; or accept that she might have only months to live and that her two young children could be left to grow up without their mother. I think it is fair to say that Sasha and her friends and family are desperate. A petition that they started to call for a reversal of NHS England’s decision not to fund second stem cell transplants now has more than 165,000 signatures, while a fund that was set up to raise the money that Sasha would need to pay for a second transplant currently stands at £90,000, but that is still not enough. Can hon. Members imagine the enormous pressure on Sasha and her family? In Sasha’s own words, she has been “condemned to death”. She says:

“In having been denied access to a second stem cell transplant, it has been decided that ‘I’m not worthy of a second chance a life; my children do not need a mother, my husband will become a widower’.”

It is a scandal that someone like Sasha should find herself in this situation—denied life-saving treatment that other patients have had in the past because NHS England says it is neither affordable nor justifiable.

[Jim Shannon (Strangford) (DUP)]

I apologise for not being here on the dot for the start of the debate. The hon. Gentleman is outlining the case for second transplants. Does he agree with the analysis from Anthony Nolan that shows that the cost of caring for someone who is refused a transplant is upwards of £130,000, while a transplant would cost only £120,000 and might save a life and prevent devastation being caused to a family? Does he agree that there is a financial as well as a moral incentive?

[Mark Tami]

Yes, I do. This is to do with how we assess the cost of treatment. I fully accept that the up-front cost of the transplant is a lot of money, but if that works the longer-term cost is not so great. However, we seem willing and able to fund drugs that might not cure people or extend their lives by very much, although the cost of them, when added up, might be more than the transplant. It is not right that we are saying to these people, “No, we’re not going to fund a second transplant”.

Sasha’s case is not unique, and there will be many more like hers if we do not change our position. Will the Minister please respond directly regarding Sasha’s case and those of others in the same situation? In the months and years ahead, there will be other people in this situation, and their voices need to be heard.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 20th December 2016 Commons Chamber

[Nicola Blackwood]

As my hon. Friend says, we must focus on innovation and better diagnostic tests, particularly bedside tests. The Government are actively reviewing evidence of the benefits of CRP tests. Pilot studies in the United Kingdom are contributing to that, and will be evaluated so that we can see how best to build on what can be shown to be working well.

[Jim Shannon (Strangford) (DUP)]

20. Given that 480,000 people develop multi-drug-resistant tuberculosis each year and that drug resistance is starting to complicate the fight against HIV and malaria, what steps has the Secretary of State taken to increase awareness in GP surgeries and to provide alternative treatments that can be equally effective, and what co-operation has taken place with devolved Assemblies?

[Nicola Blackwood]

I am grateful for that immediate promotion from the hon. Gentleman.

We have made considerable progress in establishing the building blocks of our domestic AMR strategy, including better data, guidance for primary care, and a strengthening of the framework for antimicrobial stewardship, which involves introducing incentives for the NHS to improve the prescribing of antibiotics. That has led, in the last quarter, to the first reduction in such prescribing, which I think we can take as an encouraging sign.

CQC: NHS Deaths Review

Jim Shannon Excerpts

Tuesday 13th December 2016 Commons Chamber

[Mr Hunt]

This is a very complex issue, but it is a very important one, particularly for people with learning disabilities who are users of the services of multiple organisations. The National Quality Board will put together guidance before the end of March, so that we can roll this out across the whole NHS during next year.

[Jim Shannon (Strangford) (DUP)]

I welcome the Secretary of State’s statement, and indeed his commitment to retraining and his recognition of its importance. Does he acknowledge the finding that the families, whom we must remember will be grieving, are not always treated with kindness, respect and sensitivity, which is unacceptable? Does he agree that those handling review cases involving deaths must have compassion and the ability to empathise with families, and that those must be among the qualifications of that job?

[Mr Hunt]

I absolutely endorse what the hon. Gentleman says. The point is that families and carers are part of the answer because they can help us to understand what went wrong. It is therefore in the interests of all of us to treat them with kindness, respect and dignity.

Accelerated Access Review

Jim Shannon Excerpts

Tuesday 13th December 2016 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. I congratulate the hon. Member for Dudley North (Ian Austin) on bringing it forward. One of the major issues that I seek to raise with Government, as the Democratic Unionist party’s health spokesperson, is the treatment of rare diseases and cancers.

Cystic fibrosis is a most debilitating life-limiting disease. It is believed that one in every 2,500 babies in the UK is born with cystic fibrosis. It is a disease that affects too many households in our nation and as such one that we must address to the fullest degree and in the best way possible. As a member of the all-party parliamentary group on cystic fibrosis, I have a great interest in this work and noted, with a small amount of hope, what was being labelled as a wonder drug—Orkambi, which was touted as having significantly reduced hospital admissions and slowing the decline in lung function in people with the genetic mutations that it targets. However, we all know that this year NICE was unable to recommend Orkambi, despite acknowledging the drug as an effective treatment for the management of cystic fibrosis. Since then, negotiations between the manufacturer Vertex, the Government and NHS England have reached a deadlock. Orkambi is a precision medicine that treats the underlying genetic cause of cystic fibrosis rather than just the symptoms, and is therefore very important.

Like the hon. Member for Dudley North and others, I would like to quote people from my constituency and from Northern Ireland—one is from my constituency and one is not. I was emailed by a man from Castlederg, the hometown of my mother’s family, regarding the failure of the NHS and NICE to recommend this drug for the prescription list. Although I had read much about the drug, the human aspect was made so clear in his letter:

“With the power to lift so many of the limits cystic fibrosis can place on people with the condition, it’s vital that access is granted without delay.”

I believe that many of us in this Chamber are here to highlight and draw attention to the plight of our constituents who are crying out for the hope that this drug could bring—the difference of quality years of life for someone suffering from cystic fibrosis. My friend from Castlederg also wrote about this example of a young lady who quite clearly needs help:

“I have first hand knowledge of this drug Orkambi because my daughter Rachel who suffers from cystic fibrosis has been on it for over three years now. Rachel took part in clinical trials for two and a half years and it has transformed her life. Her lung functions have risen by 19%”.

These are more than stats—this is about her life and how Orkambi has changed it.

[David Simpson (Upper Bann) (DUP)]

A constituent of mine, Charlene Barr, passed away at the age of 20, just days before she was due to visit this House to campaign for cystic fibrosis drugs. I ask the House to pay tribute to her and her family for the fantastic work they do in Northern Ireland to raise awareness of this issue and of cystic fibrosis.

[Jim Shannon]

My hon. Friend has put his constituent’s name in Hansard as part of this debate, and I believe that is a fitting tribute to her.

My friend from Castlederg also wrote of Rachel:

“Her lung functions have risen by 19%, she has gained a stone in weight and has had very little coughs or colds in this period of time. In CF terms this is massive.”

He said that Rachel was 25 years of age last January and that she

“is currently doing a PhD at University and Orkambi has really given her so much energy and strength to be able to carry out such a big undertaking. Rachel has been very fortunate as Vertex have kept her on Orkambi after the trials because I suppose it would be bad looking on their part if they took her off it...I think that its only right that people that are eligible for this drug should be given the chance to receive it and to prolong their lives for many, many years and maybe even save their lives. The problem is that NICE have told the NHS that it’s too expensive at around £104,000 per year. What price do you put on a person’s life?”

I understand the way things work and I understand well the arguments regarding the likes of pancreatic cancer drugs that could add an extra year to someone’s life versus more money for the research to find a cure, but this drug could make a life such as Rachel’s much better and could help her. The new 96-week data published recently show that Orkambi slows decline in lung function, which is the main cause of death among people with cystic fibrosis, by 42%. The data were unavailable to the NHS, as others have said, but they are available now. We look to the Minister to ensure that the opportunity is available for people to have Orkambi. People who are on Orkambi through the compassionate use programme are beginning to report total transformations in their health, including enough improvement to come off the lung transplant list.

I understand the time restrictions, but I will give one more example. So many people have contacted me, including Martin Keefe, whose beautiful granddaughter, Evie-May, was diagnosed with CF at three weeks old. She is now seven years old. Surely this is the time to begin this treatment, so that she has less irreversible lung damage and can look forward to a longer, healthier life. To be clear, I am not a scientist, a doctor or a researcher, but as an elected representative, I can listen to the difference that these drugs have made and could make to people’s lives—to Rachel’s life, Evie-May’s life and the lives of many others. The research that was not available at the time of the NICE guidelines is now available and it is compelling. With great respect, we are all conveying compelling evidence and information directly to the Minister.

The review is an opportunity to do the right thing by those suffering from this disease, particularly those such as Evie-May and Rachel, who has noticed such a change. It is for those people that I ask the Department of Health to end the stalemate and make a new decision. We look forward to the Minister’s giving them the Christmas present that they want and that we in this House all wish for. I understand the budgetary constraints, but the benefit of the drug appears to outweigh the financial cost. Rachel, Evie-May and others like them, UK-wide, deserve the chance to have the drug.

--- Later in debate ---

[David Mowat]

To be honest, I am not qualified to have an opinion on that. The right hon. Gentleman rightly said that decisions of this sort should not be made by politicians and that there has to be a process around them. It is clear that if NICE is presented by Vertex with new clinical data, or indeed new price data—this is perhaps equally relevant, but we have not really discussed it—a review could be carried out quickly without any need for us to go through the whole process again. There is a precedent for that, and if those data exist and Vertex presents them, they would be looked at. I give my commitment, and certainly that of the Minister responsible for this policy area, that that would be the case and there is no impediment to that. I do not want to raise false hopes by saying that, and I do not think I have done so. The fact that it is not a near miss—it is possibly out by a factor of eight or 10—implies that there is quite a lot of work to do on pricing.

It is worth recapping what other countries have done. Orkambi is available in Germany, although it appears from the data available that its use there is quite mixed, with perhaps no more than one in five eligible people having access to it. In France, the other country in Europe that has authorised it, Vertex has booked no sales yet this year. The picture seems quite mixed in those countries. The countries that have not authorised Orkambi include Scotland.

[Jim Shannon]

In my speech I mentioned a young girl from my constituency, Rachel, who has been on the Orkambi trials and shown exemplary improvements in her health. That is an example we can all point to of where goodness has come out of the drug for those who have had the opportunity to have it, and that is true not only in my constituency but throughout the whole of the United Kingdom of Great Britain and Northern Ireland.

[David Mowat]

There is no dispute that the drug works, and there is no dispute at all that it is life-changing. The issue before us is the extent to which it justifies a price tag of £300 million to £400 million versus other NHS priorities. All I can say on that is that it is right that the decision is not made by politicians, for the reasons given earlier by the right hon. Member for Leigh.

I was discussing the countries that have so far not authorised Orkambi. Neither Scotland nor the Republic of Ireland accepted that it was cost-effective, and it is not used in Scandinavia or Canada either.

Cancer Strategy

Jim Shannon Excerpts

Thursday 8th December 2016 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to debate these issues. I commend the hon. Member for Scunthorpe (Nic Dakin) for his presentation and for setting the scene so well, and, in his absence, I commend the hon. Member for Basildon and Billericay (Mr Baron). I hope and pray that his wife is keeping much better. I know that if he were here, he would be making a valuable contribution. He may be watching the debate from afar, but, in any event, we hope that everything goes well for him.

I thank the Backbench Business Committee for giving us an opportunity to take part in this debate on a Thursday afternoon. I also thank the hon. Member for Crawley (Henry Smith), who is the chair of the all-party parliamentary group on blood cancer, and who chairs it very well. He was instrumental in setting up the group, and we thank him for that. We are all very pleased to work alongside him, and to join in his endeavours.

As we know, the latest figures provided by Macmillan Cancer Support indicate that by the end of the current Parliament, one in two people will suffer from a form of cancer during their lifetimes. It is a sobering thought that, technically speaking, 50% of the 12 or so Members who are present in the Chamber now could be in that position in the next few years.

It is clear that improvements in diagnosis and treatment of the disease mean that more people are surviving it, or living for longer with it, and, as a consequence, 2.5 million people are living with or beyond it in the UK today. My father was a cancer survivor on three occasions. The hon. Member for Bosworth (David Tredinnick) mentioned diet, and it is true that diet cannot be ignored as an element that we can use. As I have said, my dad—who passed away last year—survived cancer three times, and he lived for some 38 years after he was first diagnosed. He was very careful about his diet, and I believe that that was a factor in his survival. The doctors told him to be careful with his diet. However, he survived for three main reasons: the skill of the surgeons, the care of the nurses, and the fact that he was a man of great faith: the Prayer for God’s People was very important to him.

Nevertheless, the sheer scale of the problem of cancer demands a co-ordinated and proactive strategy. The Minister knows that I hold him in the utmost respect, as does every one of us in the House, but I must say to him that we need a strategy that will cover the whole of that problem. I am going to make some constructive comments, and I am convinced that his response will be the one that we hope to hear.

There is more that can and, indeed, must be done. It would be remiss of us not to mention the charities with which we are all involved, or of which we all know. There is Marie Curie, which does wonderful work, there is Action on Cancer, and there is Macmillan Cancer Support, and I am only mentioning those that I have direct contact with. There are also church groups. Elim church in Newtownards, in my constituency, has a cancer group that meets every Friday. There are different groups that go to different places. I think that faith is very important when it comes to this issue.

I raised this issue during the debate on NHS funding, because cancer funding is an essential component of that. Macmillan has said that about one in four people living with or beyond cancer face disability or poor health following their treatment, and that that can remain the case for many years after treatment has ended. We should sometimes consider the care needs of cancer survivors who must face disabilities and a different lifestyle with which their families must also come to terms. It is vital that they are able to access the best care that is right for them when they need it, and to ensure that the NHS is set up to meet the changing needs of cancer patients. We have to have an NHS that responds to patients’ needs. Not only would this increase the quality and experience of survival, but it would ensure that resources put into tackling the disease are invested in the most efficient way. We must closely co-operate with cancer charities and patients to ensure that the NHS can respond in the best way possible.

This efficient use of money is key for the “Five Year Forward View” projections, indicating that expenditure on cancer services will need to grow by about 9% a year, reaching £13 billion by 2020-21. However, £13 billion of spending in 2020-21 and increased investment through the “Five Year Forward View” is what is required just to stand still. So while the figures look good, the needs indicate that we will have to look at the figures and the available funding again. This level of spending is likely to yield outcomes that continue to be below average when compared with similar international healthcare systems.

The hon. Member for Scunthorpe referred in his opening speech to international care and the need for us to be batting above our position on the international stage, and I agree. Now is therefore the time to ensure that money is spent as effectively as possible to give England and the United Kingdom of Great Britain and Northern Ireland a better chance to achieve world-class cancer outcomes and deliver on the Government’s manifesto commitment. It is clear that we need greater funding of research, and while charities do a wonderful job, and we appreciate them very much, there is most certainly a Government role that can be better fulfilled.

All Members have received the “Together for short lives” briefing, and it prompts me to highlight to the Minister the fact that there are barriers to research into children’s palliative care, which is a subject close to all our hearts when we have children of our own, and grandchildren as many of us now have. Despite improving survival rates, cancer is the leading cause of death in children, teenagers and young adults. The survival rate is significantly lower for teenagers and young adults than for children for several cancer types, including bone tumours and soft tissue sarcomas.

About 250 children aged zero to 14 lose their lives to cancer every year in the UK. In children aged 1 to 14, this is around one fifth of deaths. For teenagers and young adults, cancer accounts for around 310 deaths per year in the UK. I make a plea for children’s palliative care. I am sure that the civil servants will be looking for some notes to pass to the Minister to let him know what has been done, but I want to know what will be in done in future as well.

The cancer strategy recommended that by September 2016 a proposal should be developed to ensure that all children, teenagers and young adults diagnosed with cancer are asked at diagnosis for consent for their data and a tissue sample to be collected for use in future research studies. Data collection is important so that we can look to the future by studying the information and responding in such a way to give better help down the road. The strategy also states that NHS England should work with research funders to make best use of these resources in the future. What action can the Minister take to make sure that NHS England works to remove barriers to including children and young people with cancer in research?

Smoking has been mentioned, which reminds me of my first cigarette. I think I was five. My grandfather smoked Gallahers; there was no filter in them, and they were the strongest cigarettes in the world. Wee boys look up to their grandfathers, and I thought, “My Grandad is a great fella and he smokes away at those cigarettes. I wonder what it’s like.” I pestered my grandfather to let me try one, and he said, “Take a deep breath.” I did, and it would not be untrue to say that I was the colour of these Green Benches, and was violently sick. I never had any wish ever again to smoke a cigarette; if that is how to learn the lesson, I certainly learned it.

The Minister will know that I have a deep interest in Queen’s University Belfast and in the great research work that it does. It is world renowned for its medical research and especially for the research it carries out in the field of cancer. It is innovative, and it is looking into new drugs and medications to address cancers. Yes, we have survival rates of 50% or more, but we are still looking for the one drug that will cure all cancers, and to do that, we need research. I know that this is not the Minister’s direct responsibility, but I know that he has as deep an interest in this matter as I do.

The evidence-enabled outcomes research to inform precision oncology innovation adoption by health systems that is pioneered by Queen’s highlights how Northern Ireland punches above its weight in this rapidly evolving area, which is providing us with new approaches to prevent and treat this killer disease and preserve and improve the lives of cancer survivors. This success can and must be replicated by making greater funding available for research facilities and grants designated to changing the way in which cancer is approached and dealt with.

We have only to think of just how far the diagnosis of cancer has come in 50 years. The hon. Member for Scunthorpe spoke earlier of the achievements in this field, and also mentioned how far we still have to go. Queen’s University has partnerships with local businesses, and many foreign students come there to do their degrees and contribute to the research. There are also partnerships between Queen’s and universities here on the mainland, involving a wonderful group of universities and people making these things happen. They are making a difference through their research into cancer and the drugs that we need.

If we are to treat cancer successfully, we can do so only by adopting a continually updated approach. We have the initiative and desire to do this, but we need to ensure that the funding is in place as well. Governments need to take a positive interest in providing financial resources to ensure that everything is done to find the ultimate cure for cancer. Any strategy must make that clear, and the Minister must ensure that the necessary funding is available and enhanced when we negotiate Brexit. Brexit is mentioned in every debate we have now, but it is a fact of life. We have moved on, but we need assurances in this regard. I think we are having a debate on 19 December on the effect of Brexit on our universities.

We also need to address the postcode lottery in relation to the availability of cancer drugs. Again, this is not a criticism of the Minister—I do not do that—but it is a fact that cancer drugs are much more readily available in some parts of the UK than in others. In the past, central Government have supported the regional and devolved Administrations with funding for drugs. Is that anywhere in the equation at the moment? What discussions does he have with the regional and devolved Administrations—the Scottish Parliament, the Welsh Assembly and the Northern Ireland Assembly—on agreeing cancer strategies and bids for resources?

A cancer strategy is a difficult one to negotiate, and it seems as though there can never be enough investment. We have to ask ourselves certain questions. Are we investing in the right things and producing the best outcomes? Are we sowing seeds for the future, and are we doing the best we can with what we have? It is up to each of us to raise these questions, and, for my part, I feel we must set aside more, do more and achieve more for the one in two people who will be effected by cancer.

Terminal Illness: Support

Jim Shannon Excerpts

Monday 5th December 2016 Commons Chamber

[The Parliamentary Under-Secretary of State for Health (David Mowat)]

I congratulate the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) on bringing this debate to the House. This is an important subject and it is good that we have the chance to talk about it.

It is also good, as the hon. Lady said, that we are debating it on the UN’s International Volunteer Day. She reminded the House, if it needed reminding, how much of the palliative care burden is taken up by volunteers. We should all reflect on the fact that there are 6 million informal carers in this country. Without those people, things would be much more difficult. We have a carers strategy coming out in the next few months, which I will discuss during my speech.

The hon. Lady talked about her hospice, the work that the Marie Curie charity does there and the helper service it has pioneered in Newcastle. I am happy to acknowledge the fantastic work that hospices do. I have one in my constituency, St Rocco’s, which also does brilliant work. The hon. Lady used a good phrase: we should recognise that at their best hospices celebrate life. That is important.

The Government’s position is that high-quality, end-of-life care, reflecting individual needs, choices and preferences, should be available to everyone. That is our objective; that is what we are working to achieve. Much is being done, despite perhaps the tone of the hon. Lady’s remarks. However, of course there is more to do: more can always be done. This is not something that will ever be finished, but I want to set the context in which we are working.

[Jim Shannon (Strangford) (DUP)]

The Minister has rightly acknowledged, as has the hon. Member for Newcastle upon Tyne North (Catherine McKinnell), the importance of charities and the work that they do. In his response to the points that she has made, will he say what the Government intend to do for young carers who look after those who are at the end of life? I am aware of the pressure on those young carers given their age, and their ability to cope with the life-changing event that will happen to them and their family very shortly. We need something for them, Minister. Can I make a plea for them?

[David Mowat]

I thank the hon. Gentleman for that intervention. He is right. There are about a quarter of a million informal carers under the age of 25, half of whom are under the 16-to-18 age range. There are issues for education and future employment. The carers strategy is addressing that and I will have more to say about that.

On the context, 480,000 people in England die every year. Thirty-six per cent. of those are over 85 and about 350,000 of those deaths are expected, in the sense that they are not a surprise. Roughly half that number get some specialist palliative care as part of the pathway. The hon. Lady talked about that not being enough, and I will come back to that. Forty-seven per cent. die in hospital, which is an improvement: 57% of people were dying in hospital 10 years ago. There is an emphasis—the charities, particularly Macmillan, are offering a lead on this—on ensuring that fewer people die in hospital.

In terms of authoritative evidence of how that is working—the hon. Lady mentioned some of the points made by Marie Curie—the Office for National Statistics conducts a yearly survey called “Bereaved VOICES”, which looks at how carers and bereaved people evaluate the last three months of the end-of-life care for their loved ones. About 75% of those services are regarded as good, excellent or outstanding. Ten per cent. are regarded as poor. Ten per cent. is 48,000 deaths a year, and that is still too high. Nevertheless, 75% of those services are regarded as good, excellent or outstanding. The highest proportion of those services are in hospices. Care homes rated about the same as hospices, with hospitals doing less well. The figures are patchy, however, and that is generally linked to deprivation. They are not as good in areas of relatively high deprivation as they are in other areas. That is partly because hospice availability is somewhat skewed by the fact that the charities that run them tend to operate in more affluent areas.

The hon. Lady mentioned the need for spiritual and emotional attention at the end of life, and I can tell her that 70% of those who responded to the survey regarded their loved ones as having received good or outstanding spiritual or emotional care. That reflects well on those in the voluntary sector and the NHS who provide that care, and we should acknowledge that.

I do not wish to sound complacent, because I acknowledge that things could and should be better. I have had this job for four or five months, and there are very few of the areas I cover in which the UK could be said to be the best in the world. Let us take cancer outturns as an example. We know that our one-year survival rates for most types of cancer are worse than those of most other countries in Europe. Last year, however, the Economist Intelligence Unit compiled a quality of death index, which evaluated 50 or 60 countries in the world against a number of criteria, and the UK came top in end-of-life care. As I have said, I do not know the situation across all the areas for which I am responsible, but we should acknowledge this finding. To put it into context, Germany came seventh, France came 10th and Sweden came 16th. That has been achieved through the work of people in charities and in the NHS, but we must also acknowledge that things could be better.

The hon. Lady spoke about social care funding—although that is a slightly different area—and about delayed transfers of care and all that results from them. I have acknowledged many times in the Chamber that social care funding is under pressure and that that can cause delayed transfers of care, or bed-blocking, if we want to use that term. However, in terms of adult social care, if we compare the top 10% of councils with the bottom 10%, we see that there is a factor of 30 times in the difference between their performance in delayed transfers of care. That is not related to budgets; it is related to best practice, leadership and all that goes with that. We are sometimes quick to say that money is always the issue, but although that is of course part of it, it is not the only issue. It is important to understand that other factors are involved. Among other areas that need to be improved, we need to continue our drive to ensure that more people do not receive their end-of-life care in hospitals, where they generally do not wish to be. We should also acknowledge that there can be non-uniform commissioning among clinical commissioning groups, and we can do better in that regard as well.

The hon. Lady talked about the choice review, which was produced in 2014 by the National Council for Palliative Care, helped by Macmillan and Marie Curie. It contained some 62 recommendations. The Government’s response came out in July—it was one of the last acts of my predecessor—in the form of a five-point charter. In it, we accepted that we would have personalised care plans in place by 2020, that everyone was entitled to an honest discussion about their end-of-life care and to support in making informed choices, that family and carers would be involved in those choices, and that all people going through an end-of-life process would have an identified contact at all times.

Those elements will need to be implemented right across NHS processes, technologies and pathways, and we have set up the end-of-life care board under Bruce Keogh, the chief medical officer, to oversee that. All arm’s length bodies will be represented on the board. This has not yet been published—it is my role to ensure that it is—but the requirement now is to turn the commitments in the review response into tangible milestones, deliverables and responsibilities. I recently met several members of the End of Life Care Coalition and undertook to have a transparent process so that between 2016 and 2020 we know what we are implementing and when and how that is being done. It is important that that happens. We are extremely committed to it—it is a Government priority. We could do things better as a country, but we do pretty well and we need to do this to make things even better.

Variant CJD and Surgery

Jim Shannon Excerpts

Tuesday 29th November 2016 Commons Chamber

[Sir Paul Beresford (Mole Valley) (Con)]

I am delighted to see the Minister in her place, and I am sure that she is delighted to be here—or at least she is trying to smile under the circumstances. She has probably been made aware of my long-term interest in, and deep concern about, this subject. I am sorry to inflict it on her this evening, but she is bearing up. I also declare a potential interest, as a very part-time dentist.

Variant CJD is a fatal neurodegenerative disease originating from exposure to bovine spongiform encephalopathy-like prions, prions being small particles of protein. Variant CJD prion infections are associated with a very long and clinically silent incubation, but when the disease strikes, it causes a fast, spongy degeneration of the brain, followed by a horrible and untimely death. It is probable, but not certain, that carriers might not produce the disease themselves, but it appears to have a potentially decades-long incubation. The long incubation period means that some will die of other causes first, but, as we live longer, we cannot be certain that in time —after decades—the disease might not strike all carriers, if they survive long enough. Carriers might also unwittingly pass on the prion through blood transfusion and via surgical instruments.

Variant CJD is an appalling disease with no cure. The number of asymptomatic individuals with variant CJD prion infection is unknown, but recent research estimates that the carriers number about one in 2,000 adults, which is a staggering number. The disease poses a risk to others, via blood transfusions, blood products, organ or tissue grafts and contaminated medical or dental instruments. The response of this and previous Governments has been bipolar. To give an exaggerated simplification, the first position of this bipolar response is that as we have not had many recent cases, there is no problem—but considering the long incubation period and some recent changes, this is a dangerous assumption. The second position is that there might be a problem so we should apply the precautionary principle in some areas. We cannot have both. I believe that waiting and an occasional application of the precautionary principle really do not hit the problem. If the Minister takes no action, I hope she will recognise that the absence of evidence is not evidence of absence.

As I have said, research says that one person in 2,000 is a carrier. The incubation period may well be decades, and some individuals appear to be more susceptible and some less so, although in time this could be proven wrong. A death from variant CJD in Edinburgh in January this year showed a potentially deeply worrying change. People are of various genotypes: they can be VV homozygotic, or MM homozygotic or MV homozygotic—and for the sake of Mr Deputy Speaker, I will not explain that. Until this case of the Edinburgh patient, all cases of variant CJD had been MM. The Edinburgh patient was the first MV patient that we have seen. It was thought that being MV or VV might offer some resistance, but this does not seem to be the case. We should bear it in mind that about 45% of the population are MV.

There is still no conclusive evidence, but there is a possibility that patients with the MV genotype may have a longer incubation period, which could lead to a second wave of variant CJD. The real point is that until recently it was hoped that MV patients might not show clinical signs, but in these early days this appears to have been put in deep doubt.

Research also shows that prions are transmissible by blood products and contaminated surgical instruments, and as the prions resist decontamination from stainless steel, we have a problem. Over the years, a precautionary principle has been applied—it is still being applied, but only partially. Much has been done slowly over many years. Leucodepletion was introduced, and synthesised clotting factors have been provided for haemophiliacs. A prion unit was set up at Queen Square. Single-patient use of stainless steel endodontic reamers was made mandatory, which I find quite interesting and will return to in a few moments. Non-UK blood supplies were sourced for those born after 1 January 1996.

What I found curious about the endodontic reamers is that if a patient requires endodontics, it is possible to use the stainless steel reamer but singly; but if the patient for some reason does not have endodontics, the tooth will have to be extracted using a stainless steel instrument that is used repeatedly, called a pair of forceps.

Very early on the Government established, through Medical Research Council funding, a prion unit at Queen Square under Professor Collinge. This unit was tasked with finding a test, finding ways of stopping or reducing transmission and hopefully even finding a cure. The prion unit with DuPont has produced a RelyOn soak, which deactivates the prion on stainless steel surgical instruments. Following the soak, there is then decontamination and a washing machine—a dishwasher-type machine—and then a full-blown steriliser, particularly a vacuum-based one. These instruments will bring about total sterilisation, from which the prion will be lost.

DuPont is no longer producing the soak, because there is no market. And there is no market simply because hospitals, clinics and surgeries in this country are not required to use it; if they were, there would be a market. That is quite extraordinary considering that this country has the greatest deposit, if I may use that term, of people carrying the prion.

In a surgery washer, the disinfectant would do the job. Recently, Professor Collinge became aware that the Department of Health had announced funds for research into prion-disinfecting stainless steel instruments. I believe the prion unit has applied and will hopefully get a grant. The problem with the wash was that it meant an extra stage, which slowed everything down in the hospital, but if DuPont or another manufacturer could produce it in the form of a tablet, a powder or a liquid that would go into the dishwasher without frothing, that step would be taken away, we would get rid of the prion and there would be no time wasted. Those instruments would be prion-free.

Incidentally, the Minister may be aware that there is some evidence that a protein may—and I stress the word “may”—be responsible for the occasional transmission of Alzheimer’s disease. If she wants a little bit of help on moving with RelyOn, I can tell her that RelyOn would disinfect instruments with this protein as well.

Another major failure relates to the sourcing of blood products. People born after 1 January 1996 who needed blood products—for instance, a transfusion—could get non-UK-sourced plasma that was almost certainly prion-free. Those born before that date would get UK plasma, and would have to pray earnestly that the donor was not the one in 2,000. As a parent, I can imagine having two children born on either side of that date. If for some horrible reason they both needed blood transfusions, one child would get the prion-free plasma and the other would take the risk, as would elderly people like us.

With a test, we could be fairly sure of excluding that one in 2,000. Professor Collinge and his prion unit team have developed such a test. They tried it out in this country and subsequently went to the United States, where they checked it with an extensive research programme to make sure that it produced no false positives. They were successful. They then returned to this country. The final stage of the research needs to be tested on a large batch of anonymised UK blood samples, but the Medical Research Council will not fund it. At least, that is the case so far.

If we had that test, blood donors who were carriers would be sorted out and their blood not used, and special measures could be taken for surgery patients who proved to be carriers. In respect of the latter line, the Minister’s Department introduced new guidance in July this year. I understand that it requires separate instruments to be used on high-risk tissues in the case of patients born before and after 1 January 1997 respectively. That is sensible reasoning, because it is thought that people born since 1 January 1997—I thought that it was 1996—have had less exposure to prions via the food chain. Those people form a group who are at lower risk of prion diseases, and thus less likely to contaminate surgical instruments with prions.

The instruction from the National Institute for Health and Clinical Excellence on a risk-reduction strategy requires every hospital and clinic to have separate pools of instruments to be used for high-risk surgery. It distinguishes between patients who were born before 1 January 1997 and those who were born on or after that date. The instruments must be kept separately, and notated. Although I consider that instruction to be eminently sensible, it will add greatly to the costs to hospitals of instrument provision, storage, and the required regular re-sterilisation. Tracing and tracking of instruments has also proved costly, and some hospitals are etching all instruments with identification numbers to ensure that they can carry out the process properly.

I have only been able to obtain one figure, but I understand that since, I think, July, observing the new guidance has cost the National Hospital for Neurology and Neurosurgery in Queen Square an extra £120,000. A little further down the road, the cost to a hospital specialising in children will be considerably higher. If RelyOn were developed so that it could be used, that difficulty would be removed.

I have three small asks of the Minister. First, we must recognise that all patients need to be treated equally in respect of blood products. As one person in 2,000 is thought to be a carrier, until we have a variant CJD test everyone should receive non-UK plasma. Secondly, rather than chasing a new product for sterilisation, the Department of Health, through whatever means, should fund the manufacturer of RelyOn to produce it in a more user-friendly form. If NICE or the Care Quality Commission made the use of such a product mandatory, there would be a market potential, which might be sufficient to persuade DuPont or some other manufacturer to produce such a user-friendly product without the need for funding, because it would be sold and used every time sterilisation pouches went through the dishwasher. Thirdly, funding the last stage of the testing of the prion unit system for prion detection would enable carriers to be taken out of the blood transfusion pool, and would also ensure a more sensible separation of surgical instruments. The cost savings would be vast.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on making such a compelling case for those with CJD. In 2001, the Government set some money aside for a compensation scheme for UK victims of variant CJD. A trust fund was set up in April 2001 and compensation payments of £25,000 were made to the most affected families. Does the hon. Gentleman feel the Government should reconsider the compensation scheme and upgrade it for 2016 for those who, clearly from what he says, will probably fall into that category—although I hope not—in years to come?

[Sir Paul Beresford]

The hon. Gentleman makes a good point, but what I would really like to do is get the Government to take some action that is sitting, waiting, readily available to prevent it; otherwise, in time to come I believe we are going to have a chance of a considerable flood of variant CJD disease, but we do not know, and if this test was there we would know if the figure of one in 2,000 is right or wrong, or if we can separate patients out, so that those who have it have special instruments and the rest of us are all right, and we can also start using blood products in this country, because we will only be using products that do not have the prion on board.

In effect, the Minister needs to think about this: I do not want my grandchildren to be the generation that sees the re-emergence of variant CJD and for them to turn to me, if I am still around, and say, “Why didn’t we do something about it?” That is not a very big ask.

--- Later in debate ---

[Nicola Blackwood]

That is one reason why the Department has continued in difficult financial times to ring-fence £5.5 million a year for CJD-related research. We are keen to see safe, evidence-based, cost-effective measures to reduce the risk of vCJD. At the moment, however, there is no validated diagnostic blood test that can be used before the onset of CJD symptoms to diagnose whether someone is infected or incubating the disease. We will of course take advice from the ACDP and the Advisory Committee on the Safety of Blood, Tissues and Organs on the use of any potential test in any proposed Department of Health-funded research study or deployment by UK blood services, but there are established systems for applying for research funds. We have put such funds out there, and any applications for those funds must go through the standard processes. To do otherwise would be to undermine the reputation for research excellence that the UK scientific community has fought hard to establish.

To that end, we recently launched an open competition, inviting proposals for research to further inform our risk-management and health-protection measures, including our understanding of vCJD infection in the UK population, the development of a test able to detect pre-clinical levels of infection in blood, and the development of decontamination technologies for reusable medical instruments. I understand that Professor Collinge’s RelyOn is one application that is currently going though that process, so it would be inappropriate for me to intervene.

I assure the House that the Department recognises the fatal consequences of all forms of clinical CJD and the devastating cost to individual patients, their families and carers, which my hon. Friend described movingly. That is why we set up the vCJD Trust in 2001 in recognition of their wholly exceptional situation and the fact that the Government are their last resort for help. The trust provides a no-fault compensation scheme for vCJD patients and their families, providing payments to be made in respect of 250 cases from a trust fund of £67.5 million. Over £41 million has been paid out by the trust to date.

[Jim Shannon]

In my intervention on the hon. Member for Mole Valley (Sir Paul Beresford), I asked whether compensation should be increased because of the number of years since the agreement was first made. With great respect and humbleness, I ask the Minister whether the Government would consider that.

[Nicola Blackwood]

The scheme is considered to be particularly effective. I shall look at it in the light of the hon. Gentleman’s comments, but it seems to be meeting current concerns. It is also important not to overstate the risks of CJD compared with other disease threats we face. The incidence is now low, with only two new cases in the UK since 2012. While every death is an individual tragedy and we must be alert, we need to ensure that finite resources—research funding, policy development or committee activities—are applied proportionately and are appropriately evidence based.

The ACDP continues to provide independent risk assessment advice on prion disease, informing both research priorities and public health measures to mitigate against risks from healthcare interventions, including the surgical, medical and dental procedures issues that were raised today. The ACDP is clear that risk to both patients and the general public is extremely low. Nevertheless, the current robust systems of active surveillance for CJD continue, and our experts maintain a close watch on new evidence, reviewing it as it becomes available. I assure the House that neither the Government nor the NHS has drawn back from our responsibilities to ensure that precautionary and proportionate measures are in place to protect patients from the risk of acquiring infection with prion agents during their healthcare. We have put in place robust research investment to ensure that the situation can only improve.

Question put and agreed to.