Pompe Disease

Jim Shannon Excerpts

Tuesday 31st October 2017 Commons Chamber

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

I am delighted to have secured this debate to raise awareness of the very rare condition known as Pompe disease. I hope that the very holding of this debate will contribute to that, and I look forward to the Minister’s response, and hope that he will set out some constructive suggestions on what we will do going forward to deepen knowledge and understanding of this awful disease.

My journey towards an involvement with Pompe disease and securing this debate began when I was visited in my constituency surgery by my constituent John Foxwell. He is a polymath. He is an award-winning author and publisher, specialising in communication technology. He worked for his community, too. He lives in my constituency at present, but he previously lived in Devon where he was both an elected councillor and served as mayor, and was also a trustee and director of his local food bank.

Drawing widely on his experience as a teacher and headteacher, John Foxwell has contributed to UK Government policy over the past 20 years. He has managed national educational projects including the first education action zone and the Building Schools for the Future project, and contributed to education White Papers. His reports on education have been drawn on by international companies. Prior to that, he worked in buying and merchandising for a multinational cycle and auto retailer. Knowing the importance of communication, he also founded companies that assisted those who come to the UK from other countries, developing translation tools and assisting community cohesion.

Now, however, John Foxwell has had to leave that remarkable career behind him. He has to spend up to 15 hours a day on a mechanical ventilator to enable him to breathe, as his diaphragm is paralysed. He cannot walk far, or lift or bend or lie flat—if he did, he would struggle to breathe—and he falls easily. A common cold could cause him to go into respiratory failure and die. His life expectancy is significantly reduced. His wife has had to give up her own job to look after him. She is one of an army of carers across the country whose work needs to be recognised right across the House.

John Foxwell is one of only about 150 people in the UK who have Pompe disease. The condition is named after a Dutch medic called Joannes Cassianus Pompe. Given that he was Dutch, his surname was probably pronounced “Pompa”, but the disease has become known as “Pompey” disease. He was born in Utrecht in September 1901, and later studied medicine at the city’s university. His breakthrough came in December 1930, when he carried out a post-mortem on a baby girl who had died at the age of just seven months. He discovered that her heart had become enlarged and that the muscle tissue in the heart had become like a mesh. He thought that a substance build-up was causing that to happen to the heart muscle and came to the conclusion that that substance was glycogen. In other words, the sugar strings that store energy in cells had not broken down as they should have done, due to a faulty gene inherited from the little girl’s parents.

Dr Pompe became a pathologist at the Hospital of Our Lady in Amsterdam in June 1939, and after the German invasion of the low countries in the second world war, he became a part of the Dutch resistance. He was involved in finding places for Jewish people to hide from Nazi persecution. His laboratory at the hospital housed a radio transmitter that was used to send messages from the Dutch resistance to the United Kingdom. He was eventually arrested by the Nazis in February 1945, after the transmitter was detected. On 15 April 1945, he was executed as part of a reprisal for the Dutch resistance blowing up a railway bridge. The discoverer of this disease seems to have been a very brave man indeed.

Dr Pompe had discovered what came to be known as the first category of the disease, the infantile variety that presents in small babies who fail to thrive, and that often leads to death from heart failure in the first year of life. Life expectancy in those case is, alas, less than two years. The second category is “late onset” where, as the name suggests, symptoms do not become apparent until later on in life. As is the case with my constituent John Foxwell, progression is generally slower, but it is characterised by skeletal muscle wasting that causes mobility issues and breathing problems.

Those who suffer from the disease receive support from Muscular Dystrophy UK—I put on the record my thanks to it for sending a briefing in advance of this debate—and the Association for Glycogen Storage Disease (UK), which also provides support to sufferers here. The standard treatment for Pompe disease is enzyme replacement therapy. The faulty gene that is inherited from sufferers’ parents stops the creation of an enzyme called acid alpha-glucosidase—I will refer to it as GAA from here on—that breaks down the sugar strings of energy in muscle cells. The enzyme replacement therapy involves a genetically engineered enzyme that assists with regulating glycogen—the sugar strings— and is received into the body by regular infusions. The trade name for the enzyme is Myozyme, which is available from the pharmaceutical company Sanofi Genzyme.

The availability of Myozyme differs slightly around the country. In England, it is directly commissioned by NHS England under specialised criteria. In Wales, where my constituent lives, the All Wales Medicines Strategy Group recommended to the Welsh Government that Myozyme should be endorsed within the NHS in Wales for the treatment of Pompe disease, but there is a specific restriction in that it is not endorsed for late-onset Pompe disease on grounds of insufficient evidence of clinical effectiveness.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on presenting such a wonderful account of the gentleman involved in the history of the disease. Like others, I have been contacted by Muscular Dystrophy UK, and rare diseases come up here often and are a particular interest of mine. This is ultimately a question for the Minister, but does the hon. Gentleman agree that the Department of Health must ensure that there is adequate support for the centres across the UK that provide highly specialised care for patients with this rare muscle-wasting disease? I think the Minister will respond to that, but the hon. Gentleman’s speech encapsulates what we are all trying to achieve here.

Children’s Oral Health

Jim Shannon Excerpts

Tuesday 31st October 2017 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Birmingham, Selly Oak (Steve McCabe) on securing this debate. As always, it is good to have the pleasure of the vast experience and knowledge of the hon. Member for Mole Valley (Sir Paul Beresford) on this subject. I thank him for his contribution.

I am the Democratic Unionist party spokesperson for health, so this issue is very much on my radar. I will give some stats—the hon. Member for Birmingham, Selly Oak gave some, but I will give different ones. That does not make me any more of a statistician or an honorary member of any statistical organisation, but they are important for me because they are from my own region.

I can remember, as a child, my mother taking me to the bathroom and scrubbing the life out of my teeth; we can all probably remember something similar. When I was old enough to brush, but perhaps not old enough to know the importance of brushing, there were mouth checks, which reminded me of checking a horse’s mouth to see the health and age of the horse. Rather than understanding why it was essential that we brushed our teeth, I was probably more afraid of not having my teeth brushed and my mother doing it for me. The hon. Member for Mole Valley mentioned an increase in that among young children, which is good news. I am afraid that we do not see all the stats and realise the importance of that in Northern Ireland.

I believe that we are all fearfully and wonderfully made, as it says in Psalms, and that the intricacy of our body does nothing other than point to our creator God. Why else would we have two sets of teeth—the baby teeth that we probably abuse, which decay and fall out, and then the adult teeth? I know some adults who probably wish that they had a third, and possibly even a fourth, set of teeth.

I commend the previous Health Minister, David Mowat, who launched the new programme in January this year. I look forward to the present Minister’s response, which I know will be equally committed. A briefing I received for the debate made very interesting reading, and it all points to prevention. Tooth decay is the most common reason why five to nine-year-olds are admitted to hospital. In Northern Ireland, some 5,300 children were admitted to hospital for tooth decay and extractions, with 22,000 baby teeth removed. Moving on to 12-year-olds and teenagers, the signs of decay in permanent teeth are significant.

The hon. Members for Birmingham, Selly Oak and for Mole Valley have both referred to the need to control the intake of sugary drinks and foods. As a diabetic, I am well aware of the need to control sugar. Coca-Cola used to be one of my favourite drinks, but it is not any more—not because I dislike it, but because it was doing more harm than good and I had to stop drinking it. We need to have that control, and parents have a role to play.

There are significant regional and socio-economic differences in dental health across England—the numbers of those with tooth decay in the south-east compared with the north-west, for example; the difference is almost double. Perhaps the Minister will reply on that north/south difference. In some areas, seven times as many children are affected than in the best performing areas, where only 8% are affected.

Northern Ireland is at the bottom of the league table for oral health. I am not at all proud to say that, but it is a fact of life. We have a lot to do, in what is a devolved matter in Northern Ireland—at least until we find out where the Assembly is going, in which case the role over here might become greater. The 2013 children’s oral health survey showed that Northern Ireland had the worst oral health outcomes in the UK, and highlighted the difference in the figures compared with outcomes in England. Some 72% of 15-year-olds have signs of decay in Northern Ireland, compared with 44% in England and 63% in Wales. We have a lot to do, and we need to start that in primary school. The hon. Member for Birmingham, Selly Oak suggested education at primary school breakfast groups as a way of doing that. I think that would be excellent.

Of the 4,000 parents questioned in the Simplyhealth professionals oral health survey, 51% said that getting their child to brush his or her teeth for the recommended two minutes twice a day was a challenging task. Well, I think children are always challenging, but that is certainly one of the things that we need to do. The view has been echoed by members of my staff, who said it is as tough to get the seven-year-old grandchildren to do a good job as it is the two-year-old. That is a battle many parents face and they will do many things to try to encourage children. There are even such things as singing toothbrushes, as one method that may encourage children. It may help set the timespan, but the quality of brushing during that time could be questionable. To listen to the sound of a singing toothbrush is one thing, but brushing teeth has a purpose and we need to focus on that.

Children who experience high levels of oral disease, and are treated with fillings and other restorations, will require complex maintenance and treatment of new oral problems as they grow older. We are all aware that dental treatment is a significant cost to the NHS, with spending in England amounting to £3.4 billion. Some £2.3 billion is spent on private dental care. The NHS spends £50 million on tooth extractions for children, the majority of which are due to tooth decay. Shockingly, 42% of children did not visit an NHS dentist in the year ending 31 March 2017, even though such check-ups are free. The National Institute for Health and Care Excellence recommends that children see a dentist at least once a year, but 80% of children between the ages of one and two did not visit a dentist in the 12 months to the end of March. Those statistics are important, because they show us where we need to focus our attention.

I am conscious that other hon. Members wish to speak, so I will conclude with this. Drastic action must be taken, but for that to happen we need a funding regime so we can do more for children in schools and through the healthcare system. More needs to be done in socially deprived areas, because there is a north-south divide when it comes to those affected by tooth decay. We must ensure that parents prioritise oral healthcare and are able to access a dentist for their child easily and without fear that they will be judged or told off. Something needs to be done. We must ensure that there is not another generation of people in agony due to their teeth. Having had toothache, I know my heart goes out to those who suffer from it. Tooth decay is preventable, so we must do all we can to prevent it in our children. We should start as we mean to go on.

[Sir Paul Beresford]

On a point of order, Mr Bone. I was so enthusiastically carried away by the opening speech that I cannot remember whether I declared that I am a very part-time dentist. If I did not, I have now done so.

Mental Health: Pharmacists

Jim Shannon Excerpts

Wednesday 25th October 2017 Commons Chamber

[Mr Jones]

Alison went on to study biology at Durham University and graduated in 2003. She then began work as an audit and accounting technician at Sunderland city hospital before choosing to return to university—the University of Sunderland—to study for a four-year masters degree in pharmacy. While she was at Sunderland, Alison was awarded the prize for the best overall student in the first year, before going on to be awarded the Royal Pharmaceutical Society’s award for the best student on a masters degree programme in 2012. Her achievements were remarkable, and clearly she was dedicated to public health and the pharmacy profession.

Alison began work at Boots’ Tindale store in Bishop Auckland in August 2013. Her parents tell me that she enjoyed the work but increasingly complained about the long hours and demands it placed upon her. By mid-December 2014 she was clearly overwhelmed by what she was having to do. Her store manager noticed that she was losing weight and looking unwell. Following a conversation with the store manager, Alison expressed how down she felt. The store manager provided her with a phone number for an independent counselling service and encouraged her to speak to her GP and her family. Like many people in Alison’s position, she felt she could not speak to her family or strangers about her situation. Still concerned, her manager arranged an appointment with a GP for Alison and even attended the appointment with her. I understand that the GP indicated that she should take antidepressants, but Alison did not wish to do that. The GP gave her a crisis number to ring and also suggested some other coping mechanisms.

At this point, I would like to commend the actions of the store manager, who I think genuinely tried to help Alison. I understand that she reported her concerns about Alison to her area manager, and I have had it confirmed by the director of human resources at Boots that this case was referred and flagged up with the firm’s central HR department. It appears that all that happened, however, is that the store manager was advised about what counselling was available, but no alarm bells rang in Boots’ central HR department that one of its pharmacists was in a crisis situation and no action seems to have been taken. Instead, it was left to the store manager to do her best to assist Alison in her time of crisis.

This raises serious concerns about how Boots as a company handled the case. Having been made aware of Alison’s situation, no attempt seems to have been made centrally or high up in the organisation to intervene directly. This was a young woman not only holding down a responsible job dispensing medicines but who was clearly in a severe mental health crisis. Throughout this time, the store manager was also aware that Alison was self-harming—she had confided in her that she had cut her legs. For six months, Boots was aware of Alison’s situation but simply left it to the store manager to deal with it, although I put it on the record again that she did a great job in trying to help, and she did it to the best of her ability.

Sadly, on 25 May 2015, Alison took her own life in a room at the Hardwick Hall hotel, having taken an overdose of prescription medication. At the coroner’s inquest, it was determined that Alison had taken her own life while suffering from depression. Her parents, Mr and Mrs Stamps, attended the inquest. So did representatives from Boots, who made no attempt whatsoever to offer sympathy or speak to the family. The coroner invited those present to introduce themselves, but because it was a public hearing, the Boots representatives chose not to do so. Mr and Mrs Stamps felt, I think understandably, that their attitude was very legalistic—that they were concerned with their fears about the possibility of a legal case as a result of Alison’s death, rather than with having a compassionate understanding of how her death had occurred.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on raising an issue in which he takes a great interest, as is clear from other occasions when he has spoken in the House. I believe that this very sad case highlights for all of us the need to ensure that those in the workplace are given adequate training to offer support to workers with depression or other mental health issues. Does the hon. Gentleman agree that the Government must initiate, or make available, courses for all small and medium-sized enterprises, which would be free of charge and which would provide tools for employers that would enable them to help such staff members?

[Mr Jones]

As I have said on other occasions, I think that mental health in the workplace is one of the big issues that we do not talk about. I think the hon. Gentleman’s suggestion should be considered, but what struck me about this case was that it involved not a small employer but a huge multinational company, which should have had the capacity within its organisation to provide assistance.

Healthcare: North Staffordshire

Jim Shannon Excerpts

Monday 23rd October 2017 Commons Chamber

[Gareth Snell]

As I was saying, I pay tribute to Paula Clark, the chief executive of the trust, and the former chair of the trust, John MacDonald, for the work they have done to bring the trust together, for taking on County Hospital when it was in a precarious position and for providing stability not just to the hospital in my constituency, but to the wider north Staffordshire healthcare economy.

[Jim Shannon (Strangford) (DUP)]

Nationally, England, Wales and Northern Ireland have failed to meet one of their key targets for 18 months. I think in particular of the cancer waiting list. Northern Ireland has a non-functioning Assembly due to Sinn Féin’s intransigence—that is our reason. What does the hon. Gentleman think is the reason in Staffordshire?

[Gareth Snell]

The hon. Gentleman asks the excellent question of what cause we attribute the situation to. I am hesitant to give an answer that points the finger of blame. One reason why north Staffordshire and Staffordshire as a whole have failed to remedy the problem is that there has been a game of pass the buck in determining who is responsible for not achieving what. That means that nobody has taken responsibility. One issue in Staffordshire is industrial disease, which has caused us not to meet A&E waiting times because people who cannot get the secondary healthcare they want present to A&E with their problems. That means that we have missed both the four-hour and 12-hour A&E targets. Although we have met six of the seven targets on cancer waiting times, we are still short on one.

The hon. Gentleman’s question is pertinent because we have a hospital that already has a deficit and has been challenged to make £60 million of savings this year and a further £70 million in the next two years, and North Staffordshire and Stoke-on-Trent clinical commissioning groups have decided that the best way to help that hospital, when it is struggling to meet those targets, is to fine it an additional £10 million. I do not understand the logic of taking a fine of £10 million from an organisation that is already struggling to deliver the services with the cash that it has.

Tobacco Control Plan

Jim Shannon Excerpts

Thursday 19th October 2017 Commons Chamber

[Sir Kevin Barron]

I will comment on that, but I think the hon. Gentleman ought to be happy that this is the first time in any tobacco control plan that e-cigarettes have been mentioned and there is some intent to do things with them.

I welcome the acknowledgment of the seriousness of the issue for people with long-standing mental health problems, as the smoking rate is a staggering 40% among those with a serious mental illness. That is another area that needs to be targeted and worked on. The control plan rightly states that joined-up working and integrated commissioning between local government and the NHS are very important. This is not just the case in hospitals when people are admitted; we must focus on prevention and early diagnosis. For example, dentists are the only healthcare professionals who frequently see healthy patients and so are in an excellent position to identify possible oral health problems early on.

[Jim Shannon (Strangford) (DUP)]

We welcome the tobacco plan and the reduction in the number of people who smoke from 20% to 16%, but there is one anomaly here, to which the right hon. Gentleman has referred. I refer to chewed tobacco, as it is not mentioned in this plan and there does not seem to be any plan to address this. Oral cancer is one of the major cancers across the UK, with some half a million people affected by it. Action on this was recommended 11 years ago. Does he feel, as many in this House feel, that chewed tobacco should be part of this tobacco plan and that there should be legislation to address this?

[Sir Kevin Barron]

I am going to go on to discuss some of the issues relating to that situation. As I said, dentists are the only ones who normally see healthy people. I am aware that some GPs—we have one sat here in the Chamber—talk to healthy people even though these people do not think they are healthy at the time, but the situation is a little different for dentists. This early identification is crucial, as mouth cancer patients have a 90% chance of survival if the condition is detected early, but that plummets to just 50% if their diagnosis is delayed.

I say to the hon. Gentleman that I worked in an industry where people used to chew tobacco because we could not smoke at work. I tried it once at the age of about 16 and I am pleased to say that I never went near it again, although I used to smoke cigarettes when I came up from underground—that is a long, long time ago now. The general health implications of smoking are well known and documented, but mouth cancer often gets overlooked. This is the point: despite its killing more people in the UK than cervical and testicular cancers combined, there is still an alarming lack of public awareness towards oral cancer. There are thousands of chemicals contained in a single cigarette, and their point of entry is the mouth. Smoking helps to transform saliva into a deadly cocktail that damages cells in the mouth and can turn them cancerous.

Pharmacy teams also have an important role to play in promoting and encouraging attempts to stop smoking; as Members will know, in Healthy Living pharmacies and others, this is part of the job they do in advising people. These teams can be trained to be very effective in that. This often occurs in the community, but hospital and GP-based pharmacists are also well placed to offer this support. They are well placed to offer stop-smoking interventions with behavioural support and medication. In fact, the National Pharmacy Association is re-evaluating its position on e-cigarettes. As frontline healthcare professionals, pharmacists and dentists are exquisitely positioned to make a difference to health outcomes.

The Government must look to protect public health funding for stop-smoking services in particular if their aims are to be achieved. A growing number of local authorities have already stopped providing stop-smoking services for general smokers. The King’s Fund also highlighted that in 2017-18 local authority funding for tobacco control faces cuts of more than 30%. We have seen the transfer of commissioning responsibilities for public health services to local authorities, and subsequent cuts to the public health grant. A study by Cancer Research UK and ASH—Action on Smoking and Health, an organisation I have been involved in for more than two decades—found that 39% of local authorities reduced their smoking cessation budgets, despite the public health budget being ring-fenced by central Government. These are the issues that are happening down below, but we need to be aware of them.

All this has led to a reduction in mass media campaigns to motivate quitting, which are so vital to direct people towards the services that are on offer. Only this morning, I saw that the British Lung Foundation has published a report showing, yet again, that stop-smoking support is one of the most cost-effective treatments for people with COPD—chronic obstructive pulmonary disease.

Recently, in my role as vice-chair of the all-party group on smoking and health, I visited a smoking-cessation service—the one led by Louise Ross in Leicester. The team in Leicester have been trailblazers in the use of e-cigarettes for cessation purposes. They told me that Leicester’s stop-smoking service was the first in the country to go “e-cig-friendly” on No Smoking Day 2014. Since then, the team has built up a comprehensive bank of knowledge and insights, developed from many discussions with both vapers and smokers, that can be drawn on to help people get the best advice when they decide they have had enough of smoking. I had a discussion with a nurse who works in that service and who was using e-cigarettes in working with pregnant women to try to address our awful statistics on the effect of smoking in pregnancy. Most smoking-cessation services could do worse than talk to the people in Leicester about exactly what they are doing on that.

There has clearly been an increase in e-cigarette usage since the publication of the previous strategy in 2011: in 2012, there were some 700,000 e-cigarette users, and that had risen to 2.8 million by 2016. There is growing evidence to support the successful use of e-cigarettes as a smoking cessation aid. The Office for National Statistics found that in 2016, some 470,000 people were using e-cigarettes as an aid to stop smoking, while an estimated 2 million people had used the products and completely stopped smoking. I believe that e-cigarettes played a huge part in the beating of the target in the previous tobacco control plan. It is clear that e-cigarettes do not suit everyone, though, so there still needs to be a wide range of licensed stop-smoking medication to use alongside much-needed behavioural support.

Valproate and Foetal Anticonvulsant Syndrome

Jim Shannon Excerpts

Thursday 19th October 2017 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is always a privilege to speak in these debates. I give special mention to the hon. Member for Bury North (James Frith), whose powerful and personal summary of his life has greatly added to the debate. Everyone who heard his contribution will appreciate it and thank him for it. The right hon. Member for North Norfolk (Norman Lamb) set the scene so capably, outlining the case for addressing valproate and foetal anticonvulsant syndrome. I pay tribute to him for the summary at the end of his speech, about which I will speak later, and his eight recommendations. If there are any recommendations to follow, those are they, as everyone in the House will agree. I thank all the other hon. and right hon. Members who have spoken, because their contributions were equally as important, and I also thank those who made interventions. The House shines better whenever we discuss issues on which we can have an input both personally and on behalf of our constituents, and this is one such issue.

There is no greater gift from God than a little baby. I have two wee granddaughters, and I adore them. We maybe do not spend as much time with them and our children as we should, but we try. They are both perfect in my opinion, even if they have some tantrums. As girls, perhaps they have different tantrums to boys—I only had boys, so I do not know. We live on coffee in my office—I suspect everyone else is the same—and I have watched my parliamentary aide as she refused her normal 10 cups of coffee and drank only caffeine-free beverages for nine months during her pregnancies. Indeed, her not drinking coffee was the first indication that she was expecting again. She had had two miscarriages but now had one baby and was expecting her second, so she was going to take every step that she could to ensure that the baby was perfect. She said that the reason for not drinking caffeine was that it can make the baby’s heart beat a little fast. Mothers everywhere will do almost anything to ensure that they protect that little life when they know of its existence. Unfortunately, as this debate has clearly shown, some mothers did not know what was happening, which is why I feel strongly that more research must be done for the mothers who have long-term health problems and do not know how the medication they need may affect their children. Every Member who has spoken has made that point.

I want to throw another point into the equation. People with ulcerative colitis, Crohn’s disease and other conditions who have infusions such as infliximab have to come off them if they want to get pregnant. Some people are made aware of such things, but does everyone know that? I suspect not, but they should. The hon. Member for Central Ayrshire (Dr Whitford) and others referred to the yellow card scheme, and people need to be made aware of when incidents happen. More needs to be done to ease families’ minds, and that is why I join with colleagues today to ask for more to be done not only in the case of this epilepsy medication, but with more long-term medications in general. We must look beyond this debate and encapsulate what other people are saying.

Sodium valproate is an anti-epileptic drug that is associated with greater risks in pregnancy than other AEDs. Other valproate medicines include valproic acid and valproate semisodium. The Medicines and Healthcare Products Regulatory Agency reports that, although the general risk of foetal abnormality is 2% to 3%, the risk for women taking sodium valproate is around 10%. Did those women know? This debate illustrates that they did not, but they should have known. We have to address the issue now.

The birth defects can include spina bifida and limb, facial and skull malformations. The use of sodium valproate in pregnancy can also affect a child’s development. Many Members, including the hon. Member for Bury North in his powerful speech, have told us exactly what valproate does. Children have delays in learning to walk and talk. The drug can lower intelligence, and affected children have poor speech and language skills compared with children of the same age.

There have unfortunately been many scandals over the years, and my constituents made me aware of the thalidomide scandal, to which I can relate. The hon. Member for Eastleigh (Mims Davies), like me, spoke in yesterday’s Westminster Hall debate on mesh implants: I have been contacted by many affected women, and they did not know what the risks were, either. They have lived with the repercussions for years. One Member mentioned a lady who had to go in three times in six years to have operations before she was cured.

The same is true of Primodos. A Member who is not here told me about his involvement with that issue. There many such scandals and, as other Members have said, we need to bring them all together under one headline.

I am not a doctor, and I have no medical skills, but I can read about symptoms. I have no medical training, but it appears that the risks are significant enough that people should be fully informed of them before they are prescribed such medication. The massive risks in taking these drugs during pregnancy will then be embedded in their minds.

Many of us were supplied with the Epilepsy Action briefing. The statistics are hard to read, but they are very clear. I also thank the Library for the in-depth information it has provided so we can prepare for this debate. The surveys to which hon. Members have referred go back to 1995-96, when a possible problem was first mooted, but no action was taken. The Library briefing says:

“This survey has been repeated in 2017, when it was found that 18% of women taking the epilepsy medicine sodium valproate didn’t know the risks this medicine can pose during pregnancy and 28% of women said that they had not been informed of the risks of this medicine in pregnancy.”

How can it be that lessons have not been learned?

Dr Rhys Thomas, an honorary consultant in epilepsy at the Royal Victoria Infirmary, Newcastle, says:

“This is a dramatic and important survey focusing on a crucial area for women with epilepsy. As a medical community, we clearly could be doing more, and should be doing more. Even if women are being told of the risks, this may be at the wrong time for them—or in the wrong way.”

Sometimes the risks are not explained in a way that people understand, which is wrong. We need to have the conversation, and it has to be repeated. People need to be aware of the risks, and I am not sure that that has happened in the way it should.

The Medicines and Healthcare Products Regulatory Agency figures suggest that up to four in 10 babies are at risk of developing disorders if valproate medicine is taken during pregnancy—that is massive. How can it be ignored? Approximately one in 10 babies is at risk of physical birth defects. Babies affected by sodium valproate can have severe problems that require lifelong care and support. Are we looking at prevention? Are we looking to the future? Are we looking at what the long-term care will be? I suspect not.

It is estimated that 20,000 babies have been affected and 400 babies a year are born to women taking sodium valproate. Epilepsy Action, the Epilepsy Society and Young Epilepsy have surveyed more than 2,000 women with epilepsy, and they found that some women are still not aware of the risks of taking epilepsy medicine in pregnancy. More than a quarter, 28%, of women who have taken an epilepsy drug have not been given information. That would indicate to me that a knowledgeable medical professional should have taken the time to go through the risks of being pregnant with people on the drug. After someone has become pregnant, it may well be too late, so those discussions with the GP are very important. It is not a matter of someone simply stopping a drug when their pregnancy test is positive, as that is not the safe way to do things.

In conclusion, I urge that the eight points are followed, but that we should put in place the compensation fund that everyone in this House wants to see, because that will at least help the families affected to deal with the financial positions they are in.

[Mr Deputy Speaker (Mr Lindsay Hoyle)]

I call Cat Smith. If she could finish at half past, I would be grateful. In addition, if the wind-ups could be about nine and a half minutes long, that would allow us to bring in Norman Lamb.

Surgical Mesh Implants

Jim Shannon Excerpts

Wednesday 18th October 2017 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

First, I congratulate the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy) on bringing a major issue to the fore. I say “major”, not because there are necessarily millions of people involved—the final number of women who have been affected is not yet known—but because the impact that this issue has had on the lives of the people who have been affected by it is major and heart-breaking, and it deserves attention and action from this place.

I have received a large number of emails from Northern Irish people outlining their horrific experiences and some of the ladies affected are in the Gallery today. It would seem that in an attempt to access a cheaper form of surgery, we are putting some people at risk of horrific complications. It is clear that this surgery must be used only after the full extent of the dangers is outlined and fully understood by women, and once they accept that this option comes with a massive warning.

One of my constituents contacted me about this issue. She has not worked for two years and she will have an operation very shortly. In the short time that I have in which to speak, I will say that another woman—she is not from my constituency, but from the constituency of my party leader—contacted me and outlined her case. Her experiences are clearly similar to those of other women who have been affected:

“Listed are just a few of what I have and am still enduring since the surgeon inserted this foreign object into my body: Constant agonising pain, as if I was being cut inside… Inability to bend over without crying out in agonising pain… Constant urine and bladder infections… Inability to carry out my duties associated with my occupation… Inability to enjoy any social life whatsoever”.

She is also unable to have intimate relations with her husband, which she says has been “detrimental to my marriage”. She is also suffering:

“Depression and extreme low self esteem… Sweating profusely… Inability to walk or exercise due to chronic pain and fatigue… Severe agonising pain passing urine… Visits to A&E with agonising pains in my groin, legs and pelvic area... Visits to out of hours doctors and many visits to my GP practice”.

She says she has had:

“Regular phone calls and visits to the continence nurses to find my bladder was not emptying properly and each time told my urine sample showed up infection and blood. My family as a unit have been affected also, as they too feel my stress and pressure that I have and am under due to no one helping or believing me.”

This is a lady who is wearing what amounts to—I say this with respect—adult nappies, and I for one am not prepared to ignore her story.

There are some 250 members of the Meshed Up Northern Ireland support group and their pleas are very clear. There are no options in Northern Ireland for the surgery that is necessary. All those ladies who have had mesh implants must come across the water for surgery. Some have had operations; some are about to have an operation.

My party is very concerned about that situation and, for the record, we are asking for the best possible information, including better data for women considering this procedure; an improved and more holistic approach to caring for these women; updating of clinical guidance and standards; increased awareness among GPs of post-operative problems, with better access to follow-up clinical expertise for those women with problems; and a more complete picture of the level and seriousness of the complications. There must be standardised information for patients and a more consistent consent process, so that when women are asked about these operations they understand what they mean and the implications, because they have not been told—at least my constituents were never told—about the implications and had no idea what the operation meant. We are asking for specialist centres with multidisciplinary teams to advise on and treat complications and post-operative problems; a minimum workload of cases for surgeons carrying out relevant procedures; and further ongoing research into mesh procedures and adverse effects.

All those things would be best considered within an inquiry. That is what I am asking for today, that is what my constituents are asking for, and that is what all the sufferers from this problem in Northern Ireland are asking for.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 10th October 2017 Commons Chamber

[Mr Hunt]

We will look at the role of voluntary organisations, and I totally agree with the right hon. Gentleman that they have an incredibly important role to play. We must also consider the role of schools, because teachers are extremely enthusiastic to do more around mental health. I think that if we give them more support there is a lot more they could do.

[Jim Shannon (Strangford) (DUP)]

The Secretary of State will know that when it comes to physical health and stigma, the Department will react right away. Do the Government now recognise the importance of treating mental health with equal status to physical health?

[Mr Hunt]

We absolutely recognise that and we have legislated for it. The children and mental health Green Paper will take further steps in that direction.

Baby Loss Awareness Week

Jim Shannon Excerpts

Tuesday 10th October 2017 Commons Chamber

[Will Quince (Colchester) (Con)]

It is a pleasure to follow the hon. Member for North Ayrshire and Arran (Patricia Gibson). I thank you, Mr Deputy Speaker, and the Leader of the House for going above and beyond to secure this important debate this week, as part of Baby Loss Awareness Week. It is particularly important that the debate should be held this week.

I did not come into politics to be a baby loss campaigner. Like several of my all-party group colleagues, tragic circumstances led me to campaign to bring about change on this issue. Those circumstances occurred three years ago this Thursday, which makes this week all the more poignant. We, as politicians, have the best job in the world, and I would challenge anyone who says that Back Benchers cannot get things done. Politicians do not always have the best reputations—some of that is deserved, and some less so—but I would refer any sceptics to the work of the all-party group on baby loss.

This place is amazing, and if we use it correctly on a cross-party basis we can achieve great things. We can get things done. We can bring about positive change that will make a difference and affect people’s lives. The all-party group was established, and exists, to reduce miscarriage, stillbirth and neonatal death, and to ensure that we have world-class bereavement care and support for those who suffer the tragedy of losing a child.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman, the hon. Member for North Ayrshire and Arran (Patricia Gibson) and those who will follow for their contributions in the Chamber. The hon. Gentleman is, like me, a person of faith. We are talking about losing small children or miscarrying; my mother miscarried a number of times, my sister miscarried and the young girl who works in my office miscarried on two occasions, and what sustained all of them was their faith. Does he agree that at such times, when people are in difficult circumstances, it is important that they have someone from a faith or religious background to call on? Does he also agree that it is important that hospitals have rooms where bereaved parents can spend time together, reflect and call on someone greater than us?

[Will Quince]

The hon. Gentleman makes some very good points, and he is absolutely right that bereavement suites play a very important role, as do hospital chaplains. I say that as a man of faith, but I know lots of people who have been through this tragic experience and who are not of faith. Nevertheless, the hospital chaplain came to talk to them—not about God, and not about religion—and sat there, listened, and allowed them to come to terms with the tragic event that had just happened. The chaplain gave them the time that they needed, and which medical professionals do not always have. It is a really important role, and chaplains are a credit to the NHS.

We now have some ambitious targets when it comes to tackling stillbirth and neonatal death. I applaud the Government for their commitment to bringing about a reduction in stillbirth and neonatal death of 20% by 2020— I recognise the Minister’s efforts to make us aware of the steps that will be taken to achieve that—and 50% by 2030. Those targets are very much to be welcomed. Even if we are to achieve those targets—let us be clear: it would be absolutely fantastic if we could achieve a 50% reduction in stillbirth and neonatal death by 2030—that statistic would still mean thousands of babies dying every year. Tens of thousands of parents—

Autism Diagnosis

Jim Shannon Excerpts

Wednesday 13th September 2017 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Enfield, Southgate (Bambos Charalambous). When I think of families who deal daily with children who need that little bit more attention, I often wonder just how they do it. Many are doing it alone, with no help or coping strategies available to them as they await diagnosis.

Minister, we are stating facts, not pointing the finger, but the National Autistic Society highlighted that diagnosis can be a critical milestone for people on the autism spectrum. Of those who responded to its survey, 61% said that they were relieved to get a diagnosis, and 58% said that they got new or more support. It is therefore important that people with suspected autism are able to access timely diagnosis, wherever they are in the country, and that they get appropriate post-diagnosis support.

My knowledge of autism comes directly from contact with my constituents, based on benefit applications, the help that they need and the appeals process. I want to give an example that comes from the people—the mothers and children—whom I represent. There is an autistic boy; I will not name him or his parents. His parents do everything for him. They wash him, dress him, cook for him and feed him. They bathe him and take him to the toilet. They amuse him, they hug him and they kiss him. They love him. They do all those things, and when he is at school and they are not doing that, they wash, iron, clean, shop and find time to pay the bills. They do everything they can for their son in every part of their life, but love is not enough to get the family through the sheer exhaustion and emotional and mental strain that is part and parcel of life with someone with special needs.

As elected representatives, we in this Chamber must do more to support those people and offer them the best that society can provide, to ensure that they do not reach the point of no return. The waiting times for diagnosis are shocking. In Northern Ireland, 2,079 children are waiting for diagnosis, and some 7,100 have been diagnosed. We have a duty to ensure that the mechanisms for diagnosis and support are there. At present, we are failing, and in this timely debate there is an opportunity for all of us to take a fresh look at how we can do things differently and more effectively.