School Pupils with Allergies

Debate between Graham Stringer and Jim Shannon

Thursday 30th November 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered pupils with allergies in schools.

I sincerely thank hon. Members for making time for this afternoon’s debate. I am ever mindful that the reason why people are here is that they want to be here. The House has risen—even the Adjournment debate is over—and those of us here today are here with a purpose, which is to put forward our request.

We are very pleased to see family members of allergy sufferers in the Public Gallery, and we are here to fight for them. I thank them for the books they have made available to us. I read Helen’s story about her wee boy in today’s paper. I know that she sent the story of her child to all MPs and explained why this debate is so important.

May I say what a pleasure it is to see the Minister in his place? I do not believe I have had the opportunity to address him in his current capacity, even though I am a regular in Westminster Hall. I am really pleased, as always, to see my good friends the shadow Ministers from Labour and the SNP in their places, and other colleagues who have made an effort to be here.

What are we doing today? We are raising the important issue of allergies in our local schools. I am the Member for Strangford in Northern Ireland, where education and health are devolved, but I will make a case for Helen, her family and her wee boy Benedict. The debate is important not just for those of us present, but for people across the whole of the United Kingdom of Great Britain and Northern Ireland.

Food allergy affects around 7% to 8% of children worldwide, or about two children in an average-sized classroom of 25, which gives a perspective on what the impact can be. It highlights the sheer volume of young people and parents on whom allergies impact. It is so important that we address this issue in the right way. I understand that the Minister has a copy of my contribution and the four requests at the end of it—the four requests that Helen and others in the Public Gallery have also made.

I am the DUP’s health spokesperson, and I am grateful to be able to make the case on behalf of all representatives and those who could not attend but wish to be here. Our schools are safe places for our children—somewhere to grow and learn—which is the way we want it and the way it should be. If we want that to be the case in our schools, we need to make sure that it is safe for that to happen. Children spend at least 20% of their waking hours in school, and further data shows that 18% of food allergy reactions, and approximately 25% of first-time anaphylactic reactions, occur at school. Collectively, we are asking for action on behalf of parents who have lost loved ones and those who are concerned for the future, because the figures highlight the need for better strategies to tackle allergies in schools. Anaphylaxis due to food allergy occurs more in schools than in any other setting. The very nature of schools is that they are places where kids socialise, chat and eat food. Schools are our focus for this debate, and it is important that we get things right.

Around 30% of allergic reactions in schools occur in children previously not known to have a food allergy. With that being the case, we really need this debate to highlight the issue. There is no doubt that we all have some experience of allergies and intolerances—there is probably not a family that does not—and maybe some Members in this Chamber have an intolerance. One of my sons had some allergies when he was smaller. The lady I was speaking to before the start of this debate was talking about airborne allergies and how this triggers asthma. My second son had asthma; he was born with it. We were told that although he had psoriasis when he was first born, when the psoriasis left him the asthma would come—there was a combination. I am not medically qualified to say that; it is what the nurses and doctors told me. We were always very cautious about the things he ate, and ensured that anti-allergen tablets were taken.

One of my staff members has a son who has a severe allergy to egg whites. That is another example. He has spent numerous nights in hospital over the last 20 years of his life, and his mother has had to be especially vigilant when he has been offered certain vaccines because the vaccines themselves can complicate the issue. We are able, over the years, to build an understanding of how to cope with these allergies, but for younger children, who are being exposed to new foods and new surroundings, it is not always that easy, especially in schools.

Every debate I do, I learn something; I have clearly learned today that there are probably airborne allergens in this room at this moment and, if we have an allergy, we could react to one of those. However, what is responsible for my being here today and for making this debate happen is the story of Benedict Blythe and engaging with his mother, Helen. I understand that she sent an email to every MP. I got it, and the issue caught my attention, as it did for other hon. Members here today and those who unfortunately cannot be here but wish that they could be. Helen is utterly fantastic and a devoted voice for this cause. It was her energy, commitment and dedication that ensured that we all found out about this issue.

Benedict, Helen’s son, was allergic to milk, eggs, nuts, sesame, soya, chickpeas and kiwi. He also had asthma. In 2021, he collapsed at school and died in hospital. I am ever mindful that Helen has fought this campaign through the Benedict Blythe Foundation. She wants every school to have an allergies policy and tailored healthcare plans for all pupils with allergies, so if I could ask for just one thing at the end of this debate, on behalf of Helen and others, that would be the request. The Minister already knows what my requests are, and I am very confident that he will be interested and dedicated and committed to making those changes.

The relevant petition garnered some 13,000 signatures, so it is not a small petition by any means. It galvanised the opinion of many across this great United Kingdom, and that is also part of the story. If people have not heard the story, or read the story in the paper today, I encourage them to do so, please.

I know that Helen has raised the case of her son, Benedict, with many Members across this House, and not just that—there are thousands of people across the United Kingdom, including me and my constituents in Strangford in Northern Ireland, who support her wholeheartedly in doing this. I will just give some background to Benedict’s story, if I may.

This debate is taking place on the eve of the second anniversary of Benedict Blythe’s death. Benedict was only five years old at the time. He was a lovely young boy with so much to live for. The Benedict Blythe Learning Foundation was established in 2021 in memory of five-year-old Benedict following his collapse at school and subsequent death from anaphylaxis. He was an enthusiastic learner—as children are at that age. Children are almost like a sponge because they want to learn it all and they want to learn it right now. And that was what Benedict did. He loved to “play numbers” and learn about the natural world. Inspired by his passion for knowledge, exploration and play, the Benedict Blythe Foundation seeks to support other children to have the same positive relationship with learning and education, regardless of their ability, and to remove barriers to education. If young Benedict had survived, he could well have gone on to become an MP in this House, such was his interest in making things change and making things happen.

Benedict was allergic to dairy, eggs, peanuts, sesame and chickpeas. Helen and her husband, Pete, are still waiting for the inquest to shed light on how and why their son died, but they say the horrifying speed with which he became ill—I understand that there is an inquest to be heard—demonstrates the need for pupils with allergies to be better protected at school. That is one of the requests of this debate.

Helen and her husband, all of us here and all those in the Gallery today are calling for new legislation to make that happen, including mandatory allergy and anaphylaxis training, statutory allergy policies, individual healthcare plans for all children with allergies and spare adrenalin pens in every school. We have many requests, but that is our core request. That would allow children with allergies to have a fantastic experience of school and enjoy all the fun of learning and social interaction with their friends, despite their allergies. It is about having a normal life and yet, at the same time, having an agreement to deal with the problems of allergies.

There is a need for schools to be better prepared to manage the increasing number of children with allergies entering a classroom. In September 2017, the UK Department for Education published guidance on the use of adrenalin auto-injectors in schools. It states that from 1 October 2017 schools may purchase AAI devices without a prescription for emergency use in children who are at risk of anaphylaxis. Schools may administer their spare AAIs to children in emergencies but only to a pupil at risk of anaphylaxis, where both medical authorisation and written parental consent for use of the spare AAI has been approved.

To parallel the UK’s guidance, Northern Ireland’s version issued by the local Department of Education back home, updated in October 2018, essentially reflects the DFE document. In Northern Ireland, while schools are expected to develop policies to support pupils with medical needs, including allergies, and review them regularly, there is no statutory requirement for them to do so. It is a guideline that schools will follow. Today, we are trying to underline the need for legislation that can make that compulsory. While everyone says, “Yes, we will do that,” we need to make sure there is enforcement to do that. That is not about being critical of anybody and it is not about pointing the finger; we are just saying, “Let’s get it right.”

I can speak for the schools in my constituency that go above and beyond to cater for pupils with medical needs. The extent of the allergies that children have can vary, but ensuring that teachers are aware of the correct protocol, no matter how severe the allergy, is the core of the solution. Support for children with allergies can vary significantly across the country. Examples of best practice exist and include some in my constituency of Strangford and across Northern Ireland where schools find ways to be inclusive and keep children safe.

Whenever a mum or dad leaves a child in school, they are fairly confident that their child is safe. We need to make sure that the child is safe. That often depends on teachers going above and beyond that guidance. For every instance of good practice, there are many cases of severe allergic reactions and, unfortunately, sometimes death. The lack of universal standardisation of school allergy policies is a concern given that around a quarter of allergic reactions to food in children occur at school, some of which result in fatalities from anaphylaxis.

I am conscious of time so I will briefly make some comparisons. There are international jurisdictions that have schemes in place that could provide us as a collective with inspiration. I mention some, such as Canada and Sabrina’s law, the first of its kind ever, which requires Canadian public schools to create and execute anaphylaxis plans to reduce allergen exposure and communicate with parents, students and staff about allergies. It is about getting the communication thing right. That has to be done so that everyone understands, and people know what to look out for and what to stop the children from taking. It also requires allergy and AAI training for educators and for individual plans to be created for high-risk students. US states such as Colorado, Michigan and Ohio have laws to ensure students have access to AAIs and that schools keep adequate stocks. Again, that is precautionary but it is important that it is done. Schools must also have individual health plans in place to keep students safe.

The Benedict Blythe Foundation has already achieved some important milestones. Just last week, on 23 November 2023, the foundation launched a schools allergy code, co-created by parents, educators, clinicians, the Benedict Blythe Foundation, the Independent Schools’ Bursars Association and The Allergy Team. The foundation is to the fore in leading on that, and we congratulate it. The code is a guide to best practice in achieving a whole-school approach to allergy safety and inclusion. If you wanted a guide or legislative framework, hang it on this, because it will make the difference. It has been made available as a free resource to all schools to ensure good allergy management in their settings, and it is based around four key principles.

First, take a whole-school approach. Every member of the school community should understand allergy and their responsibility for reducing risk, from pupils and parents to staff members. Allergy management is not just the responsibility of the catering and medical teams; it is everybody’s responsibility. I know the Minister understands that and will respond to that point when he speaks. Secondly, information about the school’s approach to allergy must be communicated and given to people clearly and frequently. Thirdly, there must be clear governance and risk management—create an awareness of allergy risk across all activities and processes. Fourthly, be ready to respond. Have systems, processes and medication in place for emergencies.

Earlier this year, the foundation launched a petition, which as I said has garnered some 13,000 signatures. It called for the current voluntary guidance to be replaced by a funded, mandatory requirement for all schools. The petition has four asks—the Minister has access to them, and I am hoping that others have as well. They are that we need to have an allergy policy in place; to co-create an individual healthcare plan for all pupils with allergy and anaphylaxis; to hold spare adrenaline auto-injector pens in schools; and to train school staff and teachers in allergy awareness and allergy first aid.

The wonderful thing about the request I am making today is that it will not cost the earth. The Minister knows the figure, because I have mentioned it already. To be fair, he already knew it; he did not need me to tell him. As a gentle reminder, the steps would cost less than £5 million per year to implement in England. That is a modest sum to save a life. It would ensure that current best practice is implemented nationally, making a significant difference to keeping children safe while providing peace of mind for parents, who send their children off to school and have every intention and hope of seeing them at the end of the day. What we have here is value for money in these trying financial times.

As Members may be aware, I have worked very closely with the Oliver King Foundation to campaign for public access to defibrillators, especially in schools. I always put it on the record if somebody does something right, so I am grateful that the Government took forward my recommendations. I am no better than anybody else—far from it—but the Bill that I presented on this issue was taken up by the hon. Member for Castle Point (Rebecca Harris). Along with Ministers with responsibility for health and education at that time, she encouraged me to take this on board. The Minister here today and the Minister who preceded him made sure that defibrillators were available in schools and took steps to fund that.

Once again I make a plea to the Government, and it is about a cause similar to the one they endorsed before, which undoubtedly saved lives. We can stop severe illness and death from allergies among young people in schools if we have the correct provisions in place. I do not care who does it, as long as somebody does it. I am not worried about whether it is a ten-minute rule Bill that I introduce or somebody else introduces. Just do the job—that is the most important thing—and take the credit.

As I always state, there is an understanding that education is devolved and that it is not the sole responsibility of the Education Secretary to introduce law in Northern Ireland, but I believe we can—indeed, we must—initiate a joint approach to ensuring that the whole of this great United Kingdom of Great Britain and Northern Ireland has a strategy in place to protect young people with allergies.

Dr Adam Fox, professor of paediatric allergy at Guy’s and St Thomas’s Hospital—not too far from here—has stated:

“There is a clear need for a change in culture around how food allergies are managed in schools. The UK”—

unfortunately—

“lags behind other countries and children are suffering and even dying as a result. By really educating the whole school community about food allergy we can turn things around.”

That is my request to the Minister in this debate. It is a request that all of us, including those in the Gallery, will make collectively, and we look forward to a positive response from the Minister.

[Graham Stringer (in the Chair)]

I remind Members who wish to catch my eye that they should bob.

Christians and Religious Minorities: India

Debate between Graham Stringer and Jim Shannon

Thursday 24th February 2022 Westminster Hall

[Graham Stringer (in the Chair)]

Before we begin, I remind Members to observe social distancing and wear masks.

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this has considered the matter of the persecution of Christians and religious minorities in India.

It has been a while since we had a debate on this issue, although a few days ago we were fortunate enough to have a debate on India-UK trade negotiations, introduced by the hon. Member for Harrow East (Bob Blackman). I commented on the issue of the persecution of Christians and other ethnic groups in India during that debate, ever mindful that this debate was coming up. I am pleased to see the hon. Gentleman here; in fact, I am pleased to see everyone here. I wanted to mention that debate, because perhaps it was a warm-up for this debate. I declare an interest as chair of the all-party group for international freedom of religion or belief. Looking around this hall, I see that most of the people here are members of it. Indeed, some are officers of the APPG.

I am always an optimist, and always have been; I live my life along those lines. I always look to better things. This debate looks to better things in India, ever mindful that we have a special relationship. It is my hope that things in life will get better. I prefer the glass half full to the glass half empty, and think we should try to build the world a better future. That is at the crux of this debate. With prayer and perseverance, crises may resolve, relationships will heal, and collectively we inch towards a better world. I believe we can achieve that if we all have the same motivation, and try to achieve the same goal.

I am pleased to see the Minister for Levelling Up Communities in her place—I look forward to her response—and the hon. Member for Sheffield, Brightside and Hillsborough (Gill Furniss) on the Opposition Front Bench. I am also glad to see my good friend from the Scottish National party, the hon. Member for North Ayrshire and Arran (Patricia Gibson)—there is not a debate that she is at that I am not at alongside her, and vice versa. I am very pleased to see the hon. Member for Coventry North West (Taiwo Owatemi), who has just joined the all-party parliamentary group, here to support the debate. I thank the Library for the background information it has given us.

Freedom of religion or belief is always my hope, but looking back on the past year in India, it cannot be said to have been there for Christians and other religious or belief minorities. Back in 2016, in his address to the United States Congress, India’s Prime Minister, Narendra Modi, said that

“For my Government, the Constitution is its real holy book. And in that holy book, freedom of faith, speech and franchise, and equality of all citizens, regardless of background, are enshrined as fundamental rights.”

To be fair to President Modi, he has the motivation to do that, but the reality is very different. Some of the examples I will refer to are evidence of where that is not happening. That is what the debate is about. President Modi also said, referring to some extremely violent clashes, that a new law would have

“ no effect on citizens of India, including Hindus, Muslims, Sikhs, Jains, Christians and Buddhists.”

Well, if only. In fact, it has an effect on all the religious minorities. They no longer have the freedom they once had. They can no longer follow their beliefs and express their religious views. Today’s debate offers time to stop and reflect on the situation regarding freedom of religion or belief in India and the problems that persist today.

In January 2021, this same topic was discussed by this House. I have no doubt that the hon. Member for Harrow East and everyone else here was present for that debate. Some might wonder why we are raising the subject again. Well, I will tell the House: we are raising it quite simply because, looking back at developments in India over the last 12 months, we find a string of human rights abuses and the suffering of Christians. More than ever, Her Majesty’s Government need to take additional steps to encourage full and rigorous defence of freedom of religion or belief for all. The steps they have taken so far are clearly not enough. Christians and other minorities continue to be failed by efforts in this regard.

In the previous debate, I commented on the lack of representation of Christians and other groups in the political sphere, but looking through the Library background briefing, I see it shows that at least one of India’s states is taking steps to ensure that there is political representation of all groups.

Persecution of Religious Minorities: Middle East

Debate between Graham Stringer and Jim Shannon

Tuesday 19th July 2016 Westminster Hall

[Jim Shannon]

All the hon. Lady’s interventions have been applicable to the issues, and I thank her for that. It gives us a focus. I am conscious of time, Mr Stringer, so I will try to head on.

Despite the systematic persecution of religious or belief groups in Iraq—some expert bodies think that the situation with the Yazidis amounts to genocide; I think that, too, as do many others in the House—the UK’s Gateway, Children at Risk and Mandate resettlement schemes have helped only a few hundred in the past year or so. While some Iraqis may fit all the criteria under the current Syrian vulnerable persons resettlement scheme, they are not eligible for asylum in the UK because they are not Syrian nationals.

The all-party group that I chair is urgently calling for a modest expansion of the Syrian scheme to create an Iraqi vulnerable persons resettlement scheme. That would permit Iraqis who fit the current vulnerability criteria and are recommended by the United Nations High Commissioner for Refugees to be made eligible for asylum in the UK. That would be a small change and a small number, but it would be a significant move that would enable those subject to persecution to have an opportunity. In the wake of the Chilcot report, the UK cannot absolve itself from assisting Iraqis. Prioritising Iraqis alongside Syrians for resettlement in the UK is the least we can do. Daesh does not discriminate depending on whether individuals are Iraqi or Syrian, and neither should we.

Finally, the all-party group’s latest report, “Fleeing Persecution: Asylum Claims in the UK on Religious Freedom Grounds”, which I referred to a few moments ago, highlights what happens when individuals who have been persecuted for their religion or belief reach the UK and claim asylum, and the lack of understanding and misperceptions of religion and belief among decision makers working in the UK asylum system. We are trying to be constructive. We are not pointing the finger or trying to be nasty. We want to point out where constructive changes could be made to help the system and those people who have every cause to be here and can no longer live in their own country. In religious persecution cases, Home Office caseworkers have often based their decision on whether an asylum seeker is genuine on quick internet searches, as the hon. Member for Glenrothes (Peter Grant) said, on informal staff-made crib sheets and, in the case of Christians, on Bible trivia questions including, “What colour is the Bible?” It could be black, white or red. Does it matter what colour it is, for goodness’ sake? What is in the Bible is what matters. The word that it contains is the important issue. I sometimes wonder how these things happen. Such methods limit the capacity to differentiate between individuals who are genuinely part of a religious community facing persecution and those who have learnt the “correct” answers, as has already been referred to. Misinterpretation also plays a large role in the errors occurring in such cases. I urge the Home Office to recognise its genuine shortcomings and equip itself with well-trained staff and suitable translators to ensure a fair hearing of all cases.

I hope that the Minister agrees with the importance of addressing persecution in the middle east in both short and long-term strategies so that we in this House can, in conjunction with our partners abroad, secure the most stable world possible.

[Graham Stringer (in the Chair)]

I intend to call the Front-Bench people to sum up at 10.30. There are three people standing; the arithmetic is straightforward.

--- Later in debate ---

[Graham Stringer (in the Chair)]

Before I call Peter Grant, I assume that the proposer would like two minutes at the end of the Minister’s speech.

[Jim Shannon]

indicated assent.

[Graham Stringer (in the Chair)]

I call Peter Grant.

Rare Diseases

Debate between Graham Stringer and Jim Shannon

Tuesday 17th December 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to be called to speak in this debate, Mr Bayley, which I have sought for some time. It all goes back to a meeting that I had with a number of people from Northern Ireland back in June. They outlined their concerns about the funding and resources for rare diseases, and about strategy.

In this debate, we have an opportunity to look back. Governments in Westminster and the regions, and particularly in Northern Ireland, which I represent, are responding to a UK strategy. The timing of this debate is more appropriate than it would have been had we had it in September, or July last year, because we now have the chance to discuss where we go with the strategy, and how we tie it in throughout the United Kingdom. I appreciate the attendance of Members to discuss rare diseases. It is a pleasure to have so many in the Chamber—to make a contribution, I hope.

Some of the stories that I have heard about rare diseases would break your heart, Mr Bayley. That is where I am coming from, because my cases are those of constituents who came to me with their problems and asked me to portray or reflect on them in the House of Commons and, we hope, find a way forward. It is abundantly clear to me and to everyone in the Chamber that we need to be proactive, making changes that will give the people affected in our nation a better quality of life.

Let me set the scene with a few facts. One in 17 people in the United Kingdom will be affected by a rare disease at some point in their life, which equates to 3.5 million people; 75% of rare diseases affect children; and 30% of patients with rare diseases will die before their fifth birthday. The Teenage Cancer Trust has given me some facts. There are more than 6,000 recognised rare conditions, 80% of which have a genetic cause.

In June 2009, the UK adopted the Council of the European Union’s “Recommendation on an action in the field of rare diseases”. It recommends that member states

“Establish and implement plans or strategies for rare diseases”,

which should be adopted

“as soon as possible, preferably by the end of 2013 at the latest”.

We will not make that deadline, but I hope that we will make the deadline of February 2014, when all the regions will come together under the captaincy of the NHS and the Minister in attendance, who will push things forward.

In November 2013, a UK strategy for rare diseases was issued by Ministers from the four UK Health Departments, including our Northern Ireland Minister, Edwin Poots. The recommendation contains 51 commitments, which all four countries of the UK are committed to delivering by 2020. The commitments are UK-wide and will be implemented in country-specific plans for England, Scotland, Wales and Northern Ireland. Time prevents me from going into all 51 commitments, but I have been contacted by many groups, and I wish to raise at least some of the issues that they highlighted for me.

[Graham Stringer (Blackley and Broughton) (Lab)]

Before the hon. Gentleman gets into a long list, does he agree that the changes in the structure of the NHS have made achieving a strategy more difficult, because it is often not clear where the responsibility for dealing with rare diseases lies between the commissioning groups and NHS England?

[Jim Shannon]

The hon. Gentleman has outlined an issue that is of concern to us, and I hope that the Minister will respond to it in this debate. With great respect to the Minister, he always tries hard to respond to the issues that we ask him about; I do not mean to put up too high a pedestal, but we have high expectations of his response.

The Teenage Cancer Trust contacted me, and its correspondence included some of the figures I gave earlier, which indicate how important the subject is. The trust told me that seven young people per day between the ages of 13 and 24 are diagnosed with cancer. The trust has 27 cancer units operating throughout the United Kingdom and Ireland. There are around 1,200 new cases of cancer among teenagers and young adults in the UK every year, which is a significant number for a rare disease, as defined by the specialised services. Cancer, however, remains the most common cause of non-accidental death in young people, and the five-year survival rates are lower among teenagers for some cancer types than among children. I repeat that, according to the trust, 30% of rare-disease patients will die before their fifth birthday. It is a cruel fact that some children will not enjoy life beyond the age of five.

The trust has proposed recommendations. It believes that it is critical that the service model continues to be secure in the NHS, as part of a standard cancer care; in other words, diagnosis and care must be delivered at an early stage. It welcomed the setting up of the teenage and young adult clinical reference group in NHS England, and called on NHS England to continue to work with the group to focus development on the services.

I refer to NHS England, even though I am an MP for Northern Ireland and health is a devolved matter, because there has to be a driver on rare diseases, and NHS England is the driver to take all the regions forward together. When I refer to NHS England, I am referring to something to which we can all contribute, including those in our part of Northern Ireland.

The Teenage Cancer Trust also referred to the fact that there are different cancer biologies, treatment protocols and responses to treatment. All the issues need to be brought together, which underlines what the hon. Member for Blackley and Broughton (Graham Stringer) said. There has to be better co-ordination. The trust also recommended more trials relating to teenagers and young adults with cancer, and challenging the arbitrary age criteria that are often set for trials. It also recommended ensuring a mechanism for action on new drugs, so that they can be tested by different groups. In other words, it wants early diagnosis, a focus on the issue and, by releasing financial and regulatory burdens safely, to encourage more research development for teenagers and young adults.

Another trust recommendation was for a system that alerted GPs when they had seen a patient three times with unresolved cancer symptoms. That would help them to identify and manage those cases. That is to say, with cancer, when someone has had three strikes, it is time for the case to be looked at intensely, so that we can ascertain exactly what is wrong. The trust has put forward those ideas, which are important to what we are trying to do.

There are more than 60 different types of muscular dystrophy and related neuromuscular conditions. Approximately 1,000 children and adults for every 1 million of the UK population are affected by muscle-wasting neuromuscular diseases. It is therefore estimated that some 70,000 people are affected by a neuromuscular condition in the UK. A constituent I met in June, Dr Amy Jayne McKnight, chair of the Muscular Dystrophy Campaign in Northern Ireland, is a director of the Northern Ireland Rare Disease Partnership; she sent me the following quotation through the Muscular Dystrophy Campaign, with which I have contact:

“There is an urgent need to establish multidisciplinary support for people with neuromuscular conditions in Northern Ireland. The lack of a register of affected individuals makes clinical care particularly challenging due to a lack of planned services. My father, who has spinal muscular atrophy, experienced very sporadic clinical support and was only offered respiratory care after he ended up in intensive care—putting his health at risk. Individuals in Northern Ireland deserve the same care and support as those living in England; international standards of care guidelines exist for several neuromuscular disorders including NICE accredited guidelines for Duchenne and the forthcoming NICE guidelines for uncommon neuromuscular disorders. We need to build on existing expertise in Belfast, alongside support from Centres of Excellence in the rest of the UK, to enable an effective network of specialist services to be developed in Northern Ireland.”

That is a lengthy comment, but it puts in perspective what the partnership is seeking, and what the House should be doing in the strategy that we develop.

I have raised this issue with the Minister who has responsibility for health in Northern Ireland, Edwin Poots, but if all four UK countries are to fulfil their part of the deal, the United Kingdom Government must soon provide additional, ring-fenced funding to each region. Only then will people receive the care that they need. It is all very well to have a strategy, but we must have resources and finance in place to make it happen. The four regions need to work together to make it happen; that is what we should be trying to do.

[Graham Stringer]

The hon. Gentleman has raised some profound points about networks and information. I am not so familiar with the situation in Northern Ireland, but clinical reference groups are vital. He has talked about Duchenne muscular dystrophy. In England, patients suffering from neuromuscular diseases are often directed to a clinical reference group for generic neurological diseases, which is obviously inappropriate. Is that his experience in Northern Ireland, and does he believe that we should do something about the situation in England?

[Jim Shannon]

I cannot speak about other places, but I do not believe that that has been the case in Northern Ireland—I am not aware of it. In my area, there are young people with Duchenne muscular dystrophy, and I met some young people with Duchenne at an event held every year in the Methodist centre across the way. I have been to the past couple of events, and there has been only one person from Northern Ireland there. With my background information, I would say that what the hon. Gentleman describes does not happen in Northern Ireland, but he says that it does in England, and that needs to be addressed. I hope that the Minister will take that point on board when responding.

The United Kingdom Primary Immunodeficiency Network, or UKPIN, is a professional organisation for all doctors, nurses and scientists working in this field, and it covers six rare diseases. UKPIN—I need to be careful how I say that, because UKIP has no role in this matter whatever—has stated that its aims are the registration and accreditation of specialist immunology centres for primary immunodeficiency, or PID; the development of a national patient registry, to which the Government have given a commitment in the rare diseases strategy; and the development and dissemination of guidelines and standards for best clinical practice. The UK PID registry has been supported by the Healthcare Quality Improvement Partnership, and has engaged the participation of 95% of UK centres since its establishment in 2008. To date, nearly 3,000 patients have been registered, making it the second largest patient registry in Europe, after the long-established French registry.

The figures for Northern Ireland suggest that PID is as common as cystic fibrosis. A first report on the matter is at the presses, and we will soon have the opportunity to read it. Perhaps the most pressing point that has been raised is that there is a need for meaningful national and international collaboration on both research and development of clinical practice to ensure maximum benefit for patients. Let us not disregard international collaboration: if something good is being done in France or Germany, it would be good to exchange expertise, so that we can all improve and move forward. Groups such as UKPIN can take the lead in some of these matters. The UK has already led in the development of novel treatments—for example, with gene therapy—and in implementing novel technologies such as next-generation sequencing. It is crucial that there is ongoing investment to maintain that research.

Rare Disease UK has welcomed the promise of greater co-ordination of care for people with rare diseases. As we hear all too often, patients and families have nobody to co-ordinate the multiple elements of care and treatment that their condition necessitates. How often have we heard that, when it comes to health care? It is not just about care for rare diseases. Members here today all regularly contribute to our discussions on health issues in the House, and all too often we hear of people who do not know where to go or who to speak to, and are not quite sure who they need to be in touch with to help them. That is a key issue; if we could address that, it would be helpful.

Civil Aviation Bill

Debate between Graham Stringer and Jim Shannon

Wednesday 25th April 2012 Commons Chamber

[Graham Stringer]

I have great respect for the hon. Gentleman, and I agree with him on a number of policies, but he is in error in his understanding of the history of the development of the Conservative party’s policy. To be fair to the Lib Dems, they have always opposed the third runway at Heathrow. The Conservative party was in favour of it until Boris Johnson thought he had a chance of winning the previous mayoral election—that changed its national policy. The Labour party was in favour of a third runway. When the Conservatives became the Government, the shadow Secretary of State said that she would change the Labour party’s policy—I do not agree with this, but I can see why she did it—so that there could be a discussion about how to deal with the problem facing us.

That problem—this is the final point I wanted to make—is that Heathrow is losing destinations and business, and not just because of the capacity on runways. We face at least a double whammy: air passenger duty is having an effect, too. The situation is directing passengers to airports in Europe that have added extra runways, such as Madrid, to where British Airways has moved much of its operations, and Charles de Gaulle. The hon. Member for Daventry (Chris Heaton-Harris) was talking about integrators. The two main centres for freight in the aviation industry are Brussels and Charles de Gaulle; we have already lost out on those issues. Passengers are going to Madrid, Charles de Gaulle, Schiphol and Frankfurt, and, increasingly, to Copenhagen, at the expense of London. That is damaging not only the London economy, but the UK regions, because of the decreasing number of routes from the regional economies into Heathrow, in particular, and into the whole of the south-east system.

[Jim Shannon]

The hon. Gentleman has hit on a very pertinent point. Four countries in the world are expanding their economies at the moment and doing well: Brazil, Russia, India and China. Is not the hon. Gentleman’s point that if we want to increase our trading with those four countries, we need better airport contacts? Is that not the very issue on which we seem to be losing out?