Covid-Secure Borders

Debate between Nick Thomas-Symonds and Jim Shannon

Tuesday 15th June 2021 Commons Chamber

[Nick Thomas-Symonds]

I am glad that the hon. Gentleman raised that, because he is talking about the Government’s own failure. Last summer, the shadow Transport Secretary, my hon. Friend the Member for Oldham West and Royton (Jim McMahon), and I were speaking about the fact that 14-day quarantining was unnecessary if we had testing up and running. We could have had a test and release system with release after 10 days. We were highlighting the complete failure of the Government on testing, so I am pleased that the hon. Gentleman gave me the chance to make that point.

I give Ministers another warning. As we speak, countries with large numbers of delta variant cases are on the amber list, which has been proven clearly not to work in stopping infections reaching the UK. Thailand and Vietnam are on the amber list, despite having rocketing cases and, potentially, yet another new variant that has already entered the country. Thousands more are on flights coming and going from holiday destinations across the world. Again, we put the Government on notice: put in place proper covid protection at the border to end the culture of failure that has been their record so far.

That is why, today, we are forcing a vote again on securing our borders. The Government must take clear steps to avoid the disastrous mistakes of the past: scrap the amber list and move it on to the red list with the proper hotel quarantine system; continue to have the green list, which can grow safely over time; work with our international partners to introduce a universal, worldwide, standardised international vaccine passport; and introduce the long-awaited sector support deal for the aviation sector, called for many times by my hon. Friend the shadow Transport Secretary, saving jobs and ensuring environmental protection.

[Jim Shannon (Strangford) (DUP)]

Stobart Air, which has connectivity between Belfast City and many cities across the UK mainland, is on the edge of collapse—indeed, that will happen. Does the right hon. Gentleman feel that it is important to give the aviation sector the help that it needs to ensure, when we come back, that there will be something that we can build upon?

[Nick Thomas-Symonds]

The hon. Gentleman is absolutely right. We need to see a proper ambitious support package, with the money properly targeted to meet its aims.

Appalling hire-and-rehire tactics should be outlawed—that practice has no place in our country—and we need staff salaries protected, with a clear commitment to workers’ right. Let us also see a commitment to cleaner fuels, UK-based suppliers, tax paid here in the UK and compliance with consumer rights regulations. Inaction—continuing inaction—is not the answer. Those are steps that could be taken right now. They would reduce the risk of yet more variants reaching the UK.

When people are working so hard to contain the delta variant at home, this Government run the risk of bringing in yet more from abroad. The irresponsibility has to stop. Up and down the country, people have done their bit. They have given up their freedoms, queued up for the vaccine, given up precious time with loved ones, abandoned planned family events and sacrificed attendance at funerals. They have done all they can to protect the country; the least they can expect in return is that Members of Parliament will do the same by supporting our motion to ensure that we can secure our borders from covid variants, allowing lives to return to normal in the near future.

Children with Life-limiting Conditions

Debate between Nick Thomas-Symonds and Jim Shannon

Tuesday 29th January 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered support for children with life-limiting and life-threatening conditions and their families.

I am conscious that other people want to speak, so I will limit my time and give them a chance to contribute, Ms Dorries. I am pleased to see the Minister in her place. I spoke to her last week and before today’s debate. I thank the Backbench Business Committee for selecting this important debate and the Minister for her attendance. I also thank everyone who is here to speak on behalf of their constituents. This matter is not for my constituency alone; it needs to be addressed UK-wide in a co-ordinated manner. As for the magnitude of the issue, 49,000 babies, children and young people live in the UK with health conditions that are life-limiting or life-threatening, and the number is rising. There are 40,000 in England alone.

I have three wonderful children and three perfect grandchildren. They are the best in the world, but every grandparent probably thinks that about their grandchildren. Hearing the news that one’s child has a life-limiting condition and is likely to die young is devastating. My heart always goes out to those who hear such dreadful news. The children have complex and unpredictable conditions and often need round-the-clock care seven days a week. Families have to cope with the knowledge that their child will die before them, and daily life for the whole family can become extremely challenging.

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

I thank the hon. Gentleman for giving way and congratulate him on securing this debate. Will he join me in praising the children’s hospice movement, including Tŷ Hafan, which serves my constituency in south Wales, for their excellent work in providing care not only for the children but for the families who need support?

[Jim Shannon]

I thank the hon. Gentleman for his intervention. He is absolutely right. By the way, several of today’s speakers applied for this debate along with me and I thank them also. Hospice care is important and I thank the hon. Gentleman for his contribution. Every one of us knows the role that hospices play in the lives of those who need help at a very difficult time. Although there are many excellent services, many families still have difficulty accessing the care and support that they need, which is why hospices are important.

Children with life-threatening conditions need palliative care from when their condition is diagnosed or recognised until the end of their lives. Families also need care and support throughout the trajectory of their child’s illness, including bereavement care after they have passed away. Palliative care for children includes, but is not limited to end-of-life care, and the two terms should not be used interchangeably.

Bowel Cancer Screening

Debate between Nick Thomas-Symonds and Jim Shannon

Tuesday 1st May 2018 Westminster Hall

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

I beg to move,

That this House has considered bowel cancer screening.

It is a great pleasure to serve with you in the Chair, Sir Roger, and I am glad that you have taken your seat.

Bowel cancer is the fourth most common cancer in the UK. Sadly, around 16,000 people die from the disease each year. It is estimated that between now and 2035, around 332,000 more lives could be taken by this awful condition. Nearly everyone will survive bowel cancer if it is detected at its earliest stage, but unfortunately only 15% of bowel cancer patients fall into that category.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman for securing the debate. Does he agree that early-stage cancers are not only easier to treat, but less costly for a cash-strapped NHS? That is why we need an effective screening programme that includes lowering the screening age to 50 and implementing the simpler and more accurate faecal immunochemical test. That would help to get the earlier diagnosis, to stop the cancer.

[Nick Thomas-Symonds]

I entirely agree with the hon. Gentleman about the need for an optimal screening programme—I will come to that in a moment.

In Wales around 2,200 people are diagnosed with bowel cancer each year. Nearly half of those are diagnosed at a late stage. Approximately 900 people in Wales will die from bowel cancer every year, but 78% of patients will survive for one year or more, and 58% for five years or more. These figures are not mere statistics; every single extra day with the people we love is a great joy.

I lost my own mother, Pamela Symonds, to bowel cancer on new year’s day this year. She lived just under two years after her formal—too late, I am afraid—diagnosis. She was one of the 10,000 people diagnosed annually at the late stage of bowel cancer. I know only too well the impact that bowel cancer has on families.

Pompe Disease

Debate between Nick Thomas-Symonds and Jim Shannon

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.

Young-onset Parkinson’s Disease

Debate between Nick Thomas-Symonds and Jim Shannon

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.

Dementia and Alzheimer’s Disease

Debate between Nick Thomas-Symonds and Jim Shannon

Tuesday 12th April 2016 Westminster Hall

[Jim Shannon]

The hon. Gentleman is absolutely on the button on this issue. Very quickly on the figures, because stats can sometimes overawe us, it is estimated that by 2025 1.1 million people will have dementia and Alzheimer’s, and by 2051 2.1 million people will have the diseases. The numbers are enormous.

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

I congratulate the hon. Gentleman on securing this debate on such an important topic. On the increase in numbers, does he agree that some vital work is being done on mitigating the symptoms of Alzheimer’s, not least in many care homes and residential homes in my constituency? Equally, we have to focus on palliative care for people with Alzheimer’s at the end of their life.

[Jim Shannon]

I was going to come to that issue. I thank the hon. Gentleman for that intervention. It is not just about the diagnosis of dementia and Alzheimer’s, but about the follow-up, the path of care and how we help the whole way through. I will touch on some of those things later in my speech.

We must not abandon or diminish our efforts to find a cure. We have to take into account the reality we face and carefully plan for the future, so that all those with dementia and Alzheimer’s can get the care and support they so desperately need. As the hon. Gentleman said, that is the issue we have to address.

--- Later in debate ---

[Jim Shannon]

My hon. Friend makes a salient point. He always hits on the issues that we should all be aware of.

I welcome the fact that the Government are developing a new carers strategy. I can only hope that this debate will raise awareness of the need for urgent and large-scale reform of the way in which the Government treat carers. I welcome the dementia-friendly communities strategy and the clusters of dementia groups. In my constituency we have a number of homes where patients with dementia and Alzheimer’s are looked after directly. I also have a dementia friends group who come together in the Church of Ireland church in Newtownards. They bring together all the people of Ards and North Down who want to participate. They give them art, they give them music and they give them a chance to interact, and it is marvellous what happens.

Briefly, I want to mention some of the things that happen in Northern Ireland. The Northern Ireland dementia strategy has a list of achievements to its credit in recent times, which I bring before the House to help the debate: £6.25 million in the Dementia Together Northern Ireland project; the appointment of dementia champions—perhaps the Minister will give us some thoughts about dementia champions in the whole of the United Kingdom, because things are happening, but I would like to hear about them.

[Nick Thomas-Symonds]

On dementia champions and dementia friends, will the hon. Gentleman join me in praising the wonderful work that is done by them, especially in providing sufferers with familiarity—the point made by the hon. Member for Belfast East (Gavin Robinson)? One of the ideas is to provide sufferers with things such as memory boxes to trigger the memory, which helps terrifically with this dreadful disease.

[Jim Shannon]

I thank the hon. Gentleman for his intervention.

Cancer Drugs

Debate between Nick Thomas-Symonds and Jim Shannon

Tuesday 20th October 2015 Westminster Hall

[Jim Shannon]

I thank the hon. Lady—my hon. Friend—for her contribution, and I am happy to add my support. Indeed, I attended a meeting of the all-party group on off-patent drugs last Thursday, and it is important that we support its campaign.

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

It is a pleasure to serve under your chairmanship, Mr Hollobone. I congratulate the hon. Member for Strangford (Jim Shannon) on securing a debate on an important issue that affects many families—perhaps all families—across the UK. I intervene at this point because the hon. Member for North Down (Lady Hermon) has mentioned the private Member’s Bill that I am sponsoring—the Off-patent Drugs Bill. Would the hon. Gentleman agree that there are problems affecting the prescription of off-label drugs? It happens inconsistently across the country, and there are problems of information and a conservatism about prescribing off-label. Does he agree that those problems are best dealt with by legislation?

[Jim Shannon]

We have hit on an issue that resonates across the whole House. Let us put on the record the fact that there is a goodly representation of other parties today, and those hon. Members are here because they have an interest in the matter. I am pleased to see the Minister in his place. He tells me that I never miss one of his debates, and I do not know whether this is his debate or mine, but we are both here for the same purpose. I am pleased to see the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), in his place as well.

Survival rates are improving, and that development is great for everyone.

--- Later in debate ---

[Jim Shannon]

As the hon. Gentleman says, there are many good examples across the whole United Kingdom of Great Britain and Northern Ireland, where things are done well. We thank the doctors and nurses, who work energetically, and the many charities.

The national target for accessing these life-changing drugs is 19 weeks. The move in Northern Ireland will go a long way towards enabling the health service there to reach that target. My hon. Friend the Member for Belfast East (Gavin Robinson) was correct that we need to focus on that target. Each day in Northern Ireland, 23 people are diagnosed with cancer and 11 people die of it. According to Cancer Research UK, there were 331,487 new cases of cancer in 2011 and 161,823 deaths from cancer in 2012. That tells us a wee bit about the magnitude of cancer and its importance to every person in the whole United Kingdom. More should be done but I can only welcome the recent developments in the Province. I hope that other areas of the country can follow suit by freeing up the funds necessary and introducing legislation to prioritise fighting this awful disease to the best of our ability.

In England and Wales, cancer remains one of the biggest killers, causing 29% of all deaths. Progress has been made and all progress is welcome, but it is opportunities like today when we can really make a difference to the lives of individuals and families from all walks of life. Recent developments across the water—here—are deeply concerning. In September, 16 drugs were removed from the Cancer Drugs Fund list in addition to another 16 drugs that were removed from the list in January.

[Nick Thomas-Symonds]

I congratulate the hon. Gentleman on making that point. Does he agree with me that the removal of Abraxane from the national Cancer Drugs Fund list is particularly concerning given that pancreatic cancer patients, 80% of whom are diagnosed when the cancer has already spread, are often left with a finite and small amount of life? A drug such as Abraxane can make a significant difference to those people and that decision should—I hope it will—be reversed in future.

[Jim Shannon]

The hon. Gentleman must have helped me put my notes together because I have written that one down. It was one of my next points. Yes, we are concerned about that. I look forward to the Minister’s response on that point because, quite clearly, it is hard to understand why Abraxane should be removed given that it at least extends the life of many people.