Jim Shannon MP: speeches

Speeches

• 27 Jan 2025 · Storm Éowyn · Hansard source

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  I thank the Chancellor of the Duchy of Lancaster for his clear commitment to making things better. Northern Ireland and Strangford has been in the eye of the storm, and over the weekend it was incredible. There were whole villages with no electricity, including Ballywalter, Greyabbey and Kircubbin, as well as parts of Ards and parts of Comber and Killyleagh. Indeed, Killinchy is still without electricity. Trees are blocking roads all over the place, and there is no information about them being cleared. There are pensioners with no access to phone, light or heat, and many pensioners have gone up to 36 hours with no heat in their homes. Those pensioners, by the way, are prioritised by Northern Ireland Electricity for generators or some method of heating. I thank all the workers who came out in the worst of the storm and who are working hard, but the NIE helpline —what a disaster. People have had to wait 45 minutes for replies and have got recorded messages. I think it started to improve only today—maybe yesterday—probably due to the intervention of the Chancellor of the Duchy of Lancaster and the Executive. Has he had any discussions with the Executive about prioritising pensioners’ homes? The storm has left them incredibly vulnerable and wondering how to cope with the unknown. Waiting until 3 or 4 February to get the electric fixed is not satisfactory; that has to be sorted out. My people in Strangford want action right now, not on 3 or 4 February.

• 24 Jan 2025 · Unity Contract · Hansard source

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  I thank the Minister for a very positive statement—it is always good to have positive statements, and today is one of those occasions. It is great news to hear of the wonderful investment, which is needed to shore up not only defence but our manufacturing industry. Looking at the job allocation, I see that there are 800 jobs for Derby in England, and 200 for Glasgow in Scotland and Cardiff in Wales. I have no doubt whatsoever about the Minister’s commitment to job creation, but will she outline how the Government will ensure that businesses and factories in Northern Ireland can be involved in the supply or provision of parts? Particularly, will she outline whether the skills of Harland and Wolff can be utilised in fulfilment of the contract, and whether UK-wide involvement was a stipulation of the deal with Rolls-Royce?

• 24 Jan 2025 · Climate and Nature Bill · Hansard source

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  It is important, as the hon. Lady has underlined, that we move forward together. She has not mentioned the National Farmers Union. Can she reassure me and others in the House that the National Farmers Union, and the Ulster Farmers Union in Northern Ireland, are happy with the Bill and accept the impact that its proposals will have on them?

• 23 Jan 2025 · Plan for Change · Hansard source

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  I thank the Minister for his answer. The high streets have become almost a battlefield with shopkeepers trying to ensure that their goods are not stolen and that they are not attacked. In Northern Ireland, we had a problem similar to what the Minister has outlined and others have described. What helps is having CCTV in place, and a police force that is receptive and answers quickly to urgent requests for assistance. Has the Minister had any chance to talk to the Police and Justice Minister in Northern Ireland to ensure that what has been done here can be replicated in Northern Ireland in such a way that we can all gain?

• 23 Jan 2025 · Attorney General’s Office: Conflicts of Interest · Hansard source

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  Oh, sorry, Mr Speaker. I am so used to being called last. [ Laughter. ] My humblest apologies. My motivation is clearly justice for the innocent victims; that is what I am about. At the heart of this urgent question is Gerry Adams. When this House put in place a pension for innocent victims of the troubles and at that time excluded perpetrators from applying, Gerry Adams and his colleagues sought to block those pensions. Adams’ hands are dripping with innocent blood, not least from when he was the commander of the La Mon bombing, which killed and maimed my constituents. Will the Attorney General recuse himself from all matters relating to Adams, and will this Government ensure that Adams does not get one single penny?

• 23 Jan 2025 · International Day of Education · Hansard source

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  I congratulate the hon. Member for Southgate and Wood Green (Bambos Charalambous) on setting the scene and giving hon. Members the chance to participate in this debate. It is a pleasure to serve under your chairship, Sir Desmond—I think this might be your first time chairing Westminster Hall, and if it is I wish you well for the future, but if it is not, I apologise for not being here whenever you were here before. I am not quite sure how that could have happened, but that is by the way. It is a pleasure to speak about this massive issue. Education is the cornerstone of our society—a vital tool that empowers individuals and strengthens communities. As we mark International Day of Education, I wish to focus—it probably will not come as a surprise to hon. Members here—on the role of freedom of religion and belief, and the policies we have implemented in Northern Ireland. I will focus on what we do in Northern Ireland and how it affects education in other parts of the world; in my constituency of Strangford, it is basically all done through the mission societies, mission groups and churches. In Northern Ireland, we promote equitable access to education and foster community wellbeing globally, because we believe that is what we should be doing. Education is not merely the transmission of knowledge; it is also, very much so—as the Minister and other Members will be aware—the foundation of human dignity and freedom, and it is therefore vital. All hon. Members’ contributions today will be excellent—I never doubt that. The hon. Member for Honiton and Sidmouth (Richard Foord) outlined some of the countries across the world where the problems are now, and I want to focus on them too, when I get the chance. Around the world we see how education serves as a cornerstone of development, fostering equality and creating opportunities for millions. That is the purpose of education. As a grandfather, I am now watching my two youngest grandchildren—Freya, who is four, and Ezra, who is two and a half—learning in nursery classes, and seeing their thirst for knowledge. That is just at my house for about three days a week whenever I am home, but I see through them what others across the world would wish to achieve. That is why this is important. In some regions, children are deprived of their right to education, simply because of their religious identity or beliefs. Denying education based on those grounds violates not just human rights, but the very principles of humanity and fairness. On this International Day of Education, we have an opportunity to reaffirm our commitment to ensuring that every child—irrespective of their religion, ethnicity or gender—has access to a quality education. Through this debate, we also champion freedom of religion or belief, standing against all forms of discrimination that threaten the right to learn—a very basic request, but a priority that we must all focus on. In Northern Ireland, we are very proud of our charitable giving, which is the highest per capita in the whole United Kingdom—and I believe that, compared to the rest of the world, for a population of 1.9 million, it is probably the highest anywhere. It is deeply rooted in our Christian faith, reflecting our values of compassion and stewardship. The Bible is very clear: one tenth of our earnings should go to the Lord’s work. I am not better than anybody else—I never will be or try to be—but I try to adhere to that biblical rule, as many others do. Much of our generosity is directed towards supporting children and young people in health and education, both locally and globally. Faith-based charities and local churches play an instrumental role in supporting feeding and educational programmes worldwide. These initiatives bring hope to some of the most vulnerable communities, offering not just education, but nourishment, safety and the promise of a better tomorrow . The Eden church in my town has a mission. It goes to Swaziland, Zimbabwe and Malawi, and every year, the Swaziland choir comes over—every one of the children in that choir has, unfortunately, been affected by AIDS, which in most cases they contracted through their parents while in the womb. They have a most incredible talent for singing; I do not—whenever I sing the rain comes on—but whenever they sing, it transports me. That is one of the charities that the missions support: helping young children with AIDS, who, without these missions, would probably not have the hope of an education, health or a future at all. Eden church is not the only one that does that—there are many more. I am very blessed in my constituency of Strangford to have many churches that are all committed to the very same thing. I understand they do work in Sudan, Congo, South Africa, and Nigeria, which I mention because I have had the chance to visit it. Everyone has mentioned the international gaps filled by charitable giving, but I cannot help but mention the disparity—I will make this comment but it is not for Minister to respond to at all—between per capita funding for Northern Irish students and other UK students. FORB—freedom of religion or belief—is the universal human right that guarantees individuals the freedom to have, adopt, change, or leave a religion or belief, as well as to manifest it without coercion. In other words, people can practise that freedom in the way that they so wish, whether they are a Christian, of another religion, or none at all; that is what I believe in. This freedom is closely intertwined with education. Children and young people must be free from discrimination based on their religion or belief, or that of their parents. Faith-based organisations often lead the way in advocating for those principles, ensuring access to education for marginalised and vulnerable communities worldwide. When the hon. Member for Honiton and Sidmouth mentioned Sudan and Congo, he reminded me of Nigeria, where I was around two or three years ago—time goes so quick. I remember meeting some Christians from a north-east state of Nigeria who were displaced to the central plateau, and some Muslims who were displaced as well; education, even in those displaced camps, was still important. Who drove that? Governments were helping, but it was mostly the charitable groups, the NGOs and people outside of Government policy or strategy who were actually doing it. The volunteers were teaching at a rudimentary level, but it was an education and it was so vital. I also think of whole schools of young girls in Nigeria who have been kidnapped by Boko Haram and Daesh, and some have never been freed. Unfortunately, as so often happens at an early age, they are abused by their captors and they end up with children as well. One such example is Leah Sharibu, who was kidnapped about seven years ago and never been returned to her parents. She is now a mother of two children, according to the information that has come out. Even now, when she is a lady and no longer a school pupil or teenager, we think of her in captivity, as we think of all those young girls who are eager to be reunited with their families. The hon. Member for Honiton and Sidmouth was right to mention what is happening in Sudan, but unfortunately the same thing is happening in other parts of the world. I have been fortunate to visit Pakistan on two occasions, and I have seen the rudimentary housing in which Christians live. I always remember my first visit, when we saw two or three volunteer teachers teaching children of all ages, from four to 16, in one massive class, and they were all getting the education that was coming through. Again, education is so important to give children opportunity and chance, as well as hope, which is also important. Pakistan sets aside 5% to 6% of jobs for Christians. However, for young Christians—I mention this because they were the people I was speaking to—those job opportunities can come only if they have the education to become a nurse, a doctor or a teacher and to move on. The last time we were there, we met the archbishop of the Roman Catholic Church in Pakistan, who outlined what they were doing with their schoolchildren to give them opportunities. Personally, it gave me heart to hear what was happening, but there are many people who fall outside that. Again, education is so important, and we need to do a whole lot to make it happen. It is about opportunity, equality, human rights and somebody having the same chance to go for a job as somebody else who just happens to be a Muslim or a Hindu. Religion is not important; it is about a person’s ability to do the job, so the opportunities should be there for them. Research consistently shows that high-quality early education has long-term benefits, particularly for children from disadvantaged backgrounds. Expanding access to early education programmes and ensuring that they are adequately funded should be a priority. As the Minister knows, I am incredibly pleased to see her in her place. She very ably grasps our requests and does her darndest to ensure that our questions are answered, so I look forward to what she has to say. I also look forward to the contribution from the shadow Minister, the right hon. Member for Aldridge-Brownhills (Wendy Morton). We have fought many debates together, and we have been on the same side many times. We will be on the same side today as well, and I look forward to her contribution. By making early education a priority, we not only support individual children but strengthen families and communities, creating a ripple effect of opportunity and hope, which is so important. We do that at home, and we must also do it abroad. I have an example from back home of what we try to do in education—it is from my constituency, rather than being a global issue, but it is still part of education. One of the most effective residents’ associations in my constituency of Strangford is the Scrabo Residents’ Association, which runs projects that build confidence among young men. In Northern Ireland we have a large number of people, including young Protestant males, who have not achieved the educational standards to get them a job or an opportunity or to give them hope. The Scrabo Residents’ Association understands their potential and breaks their cycles of unemployment, and the success stories include young people who did not do well in education going on to drive heavy goods vehicles and to work in factories and farming. Their pride in their achievements is inspiring and demonstrates the value of grassroots initiatives. That is replicated by the church groups across my constituency of Strangford, and particularly in Newtownards. Things such as the Engage programme, the nurture units and community-led projects could be used by church groups, missions, NGOs, and those who have a particular interest and passion for what happens in Africa and across the world. I think of those missionary groups that are committed to the provision of life education—that is just one example. They educate children at primary school level and the whole way through, and get those children to the point where they can have jobs—that is where we need to be. Global education today will lead to jobs tomorrow. The ambitions of young people, such as those in that Swaziland choir, to be teachers, doctors or nurses, or to have their own businesses, start with education. Taking a step back, we should be amazed by what education does and can do for the future. Education is not just a pathway to personal achievement; it is a collective endeavour that shapes our society and future. By emphasising the role of faith, upholding freedom of religious belief and ensuring equitable policies, we can build a world where every child, regardless of their circumstances, has the opportunity to thrive. That is worth fighting for.

• 23 Jan 2025 · ECO4 and Insulation Schemes · Hansard source

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  I thank the Minister for a comprehensive response and, as importantly, for giving hope to all those people affected. That assures people and gives them confidence through their elected representatives in this House. In Northern Ireland, we have the affordable warmth scheme, which is different, but the goals are the same. Shortcomings have been identified; will the Minister be so helpful as to share the lessons learned with the Northern Ireland Assembly and the relevant Northern Ireland Minister? That is vital. If something goes wrong here, the lessons learned could help us to solve problems in Northern Ireland.

• 23 Jan 2025 · High Streets: Autumn Budget 2024 · Hansard source

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  Will the hon. Lady give way?

• 23 Jan 2025 · High Streets: Autumn Budget 2024 · Hansard source

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  From 1959 to 1979, my mum and dad had a shop in Ballywalter, and they had a shop before that as well, so there is a history of having shops. I will take the example of today’s high street in Newtownards. National insurance contributions, wages, theft and attacks on shop staff are all issues now being faced there. Does the hon. Lady agree that the high street needs help today like it has never needed it before?

• 23 Jan 2025 · High Streets: Autumn Budget 2024 · Hansard source

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  rose—

• 23 Jan 2025 · Business of the House · Hansard source

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  It is a real pleasure to ask the Leader of the House a question on an issue of urgent concern—such questions may be similar, but they are none the less important. There has been an alarming, violent increase in the number of killings of Christians in Nigeria; there were 63 deaths between 27 November and 25 December alone. Of those, half occurred over two days in late December. On 22 December, 15 people were killed in the Plateau state in Nigeria, and on 25 December—of course, when we were all celebrating the birth of our Lord Jesus Christ—12 people were killed in the Benue state. Will the Leader of the House join me in condemning those murders and killings and ask the Foreign, Commonwealth and Development Office to address the escalating violence against Christians in Nigeria and ensure the safety of citizens there?

• 23 Jan 2025 · Rare Retinal Disease · Hansard source

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  I know we are all anxious to get away, Dame Siobhain. So am I, by the way—I have a plane to catch. Can I say a big thank you to everyone who took part in the debate? The hon. Member for Leicester South (Shockat Adam) brought up the personal stories of the mum who was expecting and did not realise that she was going to end up with this disease and of the young boy who wanted to be a rugby star when unfortunately that was not going to happen. Those are reminders of what the disease does and I thank him for that. I note that he is an optometrist; I did not know that he did that before he came here, but now I do and I thank him for it. The Minister was right in saying that the talent and information brought to the Chamber has helped us to move forward. The hon. Member for Leicester South also discussed gene therapy and said that the eyes are the window to health. Again, I thank him for that significant contribution. The hon. Member for Doncaster East and the Isle of Axholme (Lee Pitcher) brought us the personal story of his wife, and what they live with every day. Stories of family members are sometimes forgotten; they are doing something for someone and there is a personal story about how the rest of the family is affected. The shadow Secretary of State was right that the hon. Member for Torbay (Steve Darling) brings many things to this Chamber outside of health issues. When he speaks there on the front row, we take knowledge; we are always reminded by that wee bell that rings that he is here. We all know. I thank him for that and for his knowledge, which is so important. The shadow Secretary of State and I have been together in many debates over the years. This subject is important and interesting and he was right to thank the hon. Member for Battersea (Marsha De Cordova). I should have done so; apologies. He is right that she has been a leader and a champion when it comes to eye trauma. By the way, I did not know that the work place most dangerous for the eyes was the garden. That was news to me. I will not talk about my endeavours with a chainsaw; they were scary, although I have survived. The shadow Secretary of State also mentioned regular eye tests, early diagnosis, treatment, research, affordable solutions, the UK rare diseases network and the degree of concern. I thank the Minister. It may come easy or not so easy, but the hon. Lady always endeavours to give a response on the issues, whether her direct responsibility or not. Today she has done that. She referred to this as a far reaching issue and said that the Government are committed to the rare diseases framework, to faster diagnosis and to the new treatment Luxturna. Right away, she was able to tell us that some people have got that and are feeling the benefit. Those are the pluses that come out of these debates. The Government are committed to research and development and the UK is a leader in genomics. She referred to the treatment pathway and also to ensuring that those with rare retinal disease not being left behind. That is a message we all appreciate. Today the debate has done that, and the Minister has done it well.

• 23 Jan 2025 · Rare Retinal Disease · Hansard source

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  rose—

• 23 Jan 2025 · Rare Retinal Disease · Hansard source

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  I had two constituents in Newtownards who came to me complaining of a really sore head and a terrible colour. I said, “Have you been to the doctor?” “Yes,” they said. “Go and see your optician,” I said. On both occasions, they had tumours—one of them was the size of a golf ball; the other was growing. When they got to the A&E at Ulster hospital, they were retained and had emergency operations. With a simple interview and appointment, an optician can diagnose that early on, which can save someone’s eyesight and their life as well.

• 23 Jan 2025 · Rare Retinal Disease · Hansard source

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  I beg to move, That this House has considered innovation in the field of rare retinal disease. It is a real pleasure to serve under your chairship, Dame Siobhain. I very much look forward to the contribution of the Lib Dem spokesman, the hon. Member for Torbay (Steve Darling). I think his contribution will be a personal one and important to the debate. I am pleased to see the shadow Minister, the right hon. Member for Melton and Syston (Edward Argar), in his place, and I look forward to his contribution. I am also pleased to see the Minister here. I have given both the shadow Minister and the Minister my speech with my highlighted comments, as requested. I thank the hon. Members for Leicester South (Shockat Adam) and for Doncaster East and the Isle of Axholme (Lee Pitcher) for coming along. I thank the Backbench Committee for granting the debate. I am aware that it is niche, because only 25,000 people across this great United Kingdom of Great Britain and Northern Ireland suffer from the condition, but it affects 25,000 people and 25,000 families. As one who has tried to promote rare diseases on every occasion, I asked for this debate; the Members in the Chamber today have a particular interest. As the wearer of glasses since the young age of eight, which was not yesterday, I am thankful that the issues with my eyes are easily diagnosed and treated. My annual appointment with Mackey’s opticians in Newtownards keeps me right. It was with their help that I realised I had type 2 diabetes. With diabetes, we have to be a wee bit more careful with eyesight issues. I remember going to an event in Cambridge, where I got my eyes tested on one of the new machines they had. A guy came up to me and said, “Jim, when was the last time you got your eyes tested?” I said, “I get them tested every year.” He said, “Well, here’s my read-out. Take it back to your optician.” I took it back, thinking I had glaucoma. My dad had glaucoma, so I was rather worried. I was probably a wee bit perturbed because I had been to my opticians a few months before and was not aware of anything. I went to my optician and she said, “Jim, do you want to do the big tests?” We did the big tests up in Belfast. They did everything that they could possibly do with my eyes, and thank goodness I did not have it. The point I am making is that it is really important that eyes are tested regularly. There is a well-known saying that the eyes are the window to the soul, and so they are, but they also are an indication of overall health and therefore eye care is as vital as any other part of our national health. The hon. Member for Torbay and I talked before the debate. Chris McCausland, who did “Strictly Come Dancing”, has a rare retinal disease but look at what that man can do—his sense of humour, as a comedian, and his talent. He whizzed round the floor better than someone with full eyesight. He inspired the nation and rightly won. Although rare diseases are individually rare, they are collectively common, with one in 17 people affected by a rare disease at some point in their lives. In the UK that equates to approximately 3.5 million people and 110,000 in Northern Ireland. My interest in rare disease goes back to the Northern Ireland Assembly where I served for 12 years before coming here. This debate today will focus on a niche rare disease, and specifically on rare diseases relating to retinal diseases that lead to sight loss. Inherited retinal dystrophies—IRDs—is the collective term used to describe inherited sight loss conditions that occur when cells in the retina deteriorate in an unpredictable way. I will talk about research and development because that is really important. IRDs are the most common cause of blindness in children and working-age people in the United Kingdom of Great Britain and Northern Ireland. Although the conditions are rare, with some 25,000 people affected in the UK and 600 in Northern Ireland—some are my constituents, which is why I have introduced the debate—the impact on the people living with them is significant. When I ask people which sense they would not want to lose, they always say sight, because the eyes are the window to the world and to the soul—they help people appreciate what is around them. Although the other senses are also important, when someone loses their sight, they almost entirely lose the ability to know what is happening around them. People living with rare retinal conditions not only face challenges in their day-to-day life caused by sight loss, but experience the added challenge of living with a rare condition and the impact it has on them and their families. That includes delays and complexity in getting a diagnosis. I know the Minister is always happy to respond positively and I look forward to her comments on how we can hurry up, or make easier, the process of getting a diagnosis. Living with a rare condition also presents challenges in accessing treatment and specialist care. There is also a lack of awareness of these conditions. Some 95% of rare diseases currently lack an approved treatment and the existing standard of care for rare retinal diseases is equally limited, meaning there is high unmet clinical need. I will go into the National Institute for Health and Care Excellence’s process at the end of my speech, since it relates to my major request. Others will add their contributions as well. The dual-pronged burden on patients with rare retinal disease means supporting access to new innovations that can improve the diagnosis, treatment, and care for these conditions. That should be a priority for the Government and their relevant agencies. Sight is the most important sense among adults in the UK, with 88% of people ranking it as their most valuable sense in a recent study published in JAMA Ophthalmology. According to a report by Deloitte, the estimated total cost of IRDs in the UK is £523.3 million, a massive total, showing the importance of the debate. The total includes wellbeing costs of £196.1 million and total economic costs of £327.2 million, of which productivity costs affecting those of working age are £114.1 million and informal carer costs are £84.5 million. Those statistics support the necessity of the debate and highlight the importance of having a ministerial response on the Government’s stance on the issue. New innovations that represent a step change in the standard of care for people living with rare retinal diseases are on the horizon, which we have to be prepared for. At the centre of this is a shift toward personalised medicine made possible by recent advances in cell and gene therapies, a transformative class of medicines described by the Minister of State for Science, Research and Innovation, Lord Vallance, as a “new era of cures”. I hope this is where we are going. CGTs are highly specialised types of treatment that aim to treat the root cause of diseases and disorders by augmenting, repairing, replacing, or regenerating organs, tissues, cells, genes, and metabolic processes in the body. Often one-off treatments, they can deliver potential benefits over the course of a patient’s lifetime and therefore represent a step change in how we treat disease. The families, as well as the people who have the retinal disease, are in the middle of that process and experience all the angst that comes with it as well. Access to new innovations and treatments for rare diseases, termed “orphan medicines”, is a challenge across all healthcare systems. Smaller patient populations along with complex and difficult diagnoses can mean the cost of developing new treatments is higher, compared with treatments for more common diseases, and there can be more uncertainty in the evidence base generated from clinical trials. In a study on social attitudes to rare diseases, 82% of participants felt that NICE should evaluate the cost-effectiveness of treatments for rare diseases differently from more common diseases, taking into account the additional challenges in developing medicines for rare diseases and, of course, looking at rare diseases overall. It is therefore vital that the regulatory or assessment bodies factor in those considerations when making decisions on whether to approve new treatments or new innovations for rare retinal diseases. I will now try to develop an argument on one of my other asks. In England, the assessment body for medicine, the National Institute for Health and Care Excellence, has two medicine appraisal pathways: the standard technology appraisal pathway and the highly specialised technology pathway. That is, perhaps, the central core issue of the debate. In Northern Ireland, the Department of Health considers and endorses technology appraisals undertaken by NICE, but, whatever the NICE approvals are here, the Northern Ireland Assembly and the Health Department follow its indications and directive—whatever happens here comes to us. We will be the beneficiaries of NICE recommendations in Northern Ireland, so the debate is really important for me both as the DUP’s health spokesperson and as a Member representing a constituency in Northern Ireland, where health is a devolved matter. Treatments for very rare diseases have traditionally struggled to get approval from NICE when routed through this standard technology appraisal pathway, which is not designed to factor in the additional uncertainty associated with rare disease treatments; we have a big ask in relation to that, Minister. It is therefore vital that the higher specialised technology appraisal pathway can enable timely patient access to treatments for rare diseases. NICE is conducting a review of its HST programme criteria for determining what treatments are assessed by the HST pathway. The aims of the review, which are welcome, are to ensure more consistent, predictable and transparent decisions, but there are definitely concerns that the refinements proposed by NICE in its consultation may in fact narrow the number of future treatments eligible for the HST pathway, and, ultimately, risk patient access to future treatments for rare retinal disease. I will have three or four asks at the end, but that will be one of the key ones and it will conflict with the ambitions set out in priority 4 of the Government’s rare diseases action plan 2024 for improved “access to specialist care, treatment and drugs”. Of particular concern for retinal disease today are the thresholds being proposed under criteria 1 and 3. Criterion 1 is that the disease is ultra-rare and debilitating, which is defined as having a prevalence above 1 in 50,000 in England. Criterion 2 is that “no more than 300 people in England are eligible for the technology in its licensed indication”, and that the technology is not an individualised medicine. Those changes, which tighten the criteria for HST routing, would force more new and innovative treatments for rare retinal disease, as well as other rare diseases, to be assessed via the STA pathway. To be approved via the STA pathway, treatments are required to meet a significantly lower incremental cost-effectiveness ratio threshold, which is often not possible for many treatments for rare diseases. As a result, innovations might not be approved by NICE for routine use in the NHS, and that is the question I am posing to the Minister. I am very pleased to see the Minister in her place; she usually has to answer my queries in debates and she always tries to do so. People living with retinal disease, as well as carers and clinicians, all highlight slowing down the progression or, if possible, reversing sight loss as a top priority for future treatments for IRDs. Delays in access to treatment may result in further disease progression and the deterioration of sight. We need solutions to improve diagnosis, treatment and care for people living with rare retinal diseases. To address the concerns on the proposed refinements to the NICE HST criteria, I would like to ask what discussions the Department of Health and Social Care and Ministers have had with NICE on the potential impact of the changes on people living with rare retinal diseases, and on opportunities for appropriate flexibility? Will Ministers, in the absence of any meaningful change to the HST criteria, commit to exploring a potential “third way”—it is always good to have a third way—for technologies that do not meet the criteria for HST and have a low likelihood of positive recommendations under the STA pathway? On the support for people living with rare retinal diseases more broadly, the Government’s UK rare diseases framework and the corresponding annual action plans have been important in providing co-ordinated action across four areas: helping patients to get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals—perhaps those who are not skilled or do not have the necessary training; making the co-ordination of care better; and improving access to specialist care, treatment and drugs. There are four asks in relation to that. The momentum of the framework and the action plans must continue to deliver improvements for people living with rare diseases, including rare retinal diseases, which this debate is all about. The current framework is due to come to an end in 2026; what happens afterwards? We hope there will be a clear action plan. I am pleased that the Government have taken the decision to spend £26 billion on the NHS—it shows their commitment to addressing a key issue, which is right, and we all welcome that commitment—but do they plan to publish a new rare diseases framework in 2026? Will they include access to rare disease medicines as a central pillar of the next framework, and keep the issues relating to NICE appraisal of rare disease treatments under ongoing review so that those suffering with the conditions can access effective treatments? Retina UK, which is celebrating its 50th anniversary, has provided some background to the current situation. I put on the record my thanks to the charity for making that information available; it probably helped all of us who are taking part in the debate. Some 54% of respondents to Retina UK’s 2022 sight loss survey were aware of research into their condition, while 20% had participated in that research and 31% could name the gene causing their condition, which was a significant improvement from 15% in 2019. That is a positive step in the right direction, reflecting better genetic diagnosis and education. However, unmet demand for genetic testing and counselling persists, emphasising the need for increased funding and accessibility. Something that struck me about rare retinal diseases is that 93% of respondents to the survey reported experiencing anxiety, stress or loss of confidence due to sight loss, but only 16% had accessed mental health support. Some level of anxiety, depression, angst or stress often comes with a very difficult disease, particularly retinal disease. Although resources such as Discover Wellbeing offer tailored psychological support and strategies to improve resilience and quality of life, it is clear that more support needs to be offered. For example, perhaps GP surgeries could be given more information to signpost our constituents—their clients—to greater support, which should be available as they navigate their life journey in a completely different way. It must be noted that 56% of survey respondents prioritised funding research into treatments, compared with 23% who prioritised providing support services and 21% who prioritised raising societal awareness. Improved genetic testing services and counselling are crucial to enhancing patient care and enabling clinical trial participation. Some 39% of respondents had experienced sight loss-related accidents requiring medical attention, so policies to promote access to mobility aids and rehabilitation services are also urgently needed. [ Interruption. ] A bell is telling me that my time is coming to an end. I am thankful for that reminder—I am on the last page of my speech. Continued investment in research, infrastructure and inclusive technology will drive significant improvements in the lives of individuals with IRDs, but that requires commitment from the Minister, the Government and this House to increase funding for research. First, we must support funding initiatives for genetic testing, clinical trials and treatment innovation for rare retinal diseases; secondly, we must promote accessibility and enhance the programmes that provide assistive technologies, mobility aids and accessible information to individuals with sight loss; thirdly, we must expand mental health services; and fourthly, we must advocate for early diagnosis and counselling. I have made a number of requests, but they are positive requests. I hope that, in the response from the Minister and from my Government, we can find a way forward to help those with retinal diseases. We must seek to deliver in a more effective way, and this debate is the first step towards that.

• 23 Jan 2025 · Agricultural and Business Property Reliefs: OBR Costing · Hansard source

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  Sometimes I am absolutely flummoxed—we probably all are—by the Chancellor’s intent to tax working family farms, which we all know will result in the loss of small farms, the sale of the land and a reduction in food security. Now it seems that the OBR agrees that it will not make savings. Will the Minister commit to meeting Cabinet colleagues urgently to remove the sword of Damocles that is hanging above small family farms and hurting the agrifood sector as a whole? I say to the Minister that there is a way forward: increase the threshold from £1 million to £5 million, and family farms will be saved.

• 22 Jan 2025 · Certificate of Common Sponsorship · Hansard source

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  It is a real pleasure to serve under your chairship, Dr Huq. I thank the hon. Member for Poole (Neil Duncan-Jordan) for setting the scene so very well. The No. 1 reason why I am here is to support him, and the No. 2 reason is that I want to consider the benefits of the legislative change that he has proposed. Through the Minister, we will see whether that legislative change can be achieved. If we can do that, we can move this forward. Many firms in my constituency of Strangford have seasonal workers and must complete much paperwork. They go through various loopholes to secure their workers when they simply cannot source labour at home. There is a very clear purpose to that, which can be beneficial for us all. Firms cannot apply for these certificates annually in advance and rather have to wait three months, which is difficult logistically; I believe that an extension to the certificate of sponsorship could and should be considered. I look forward wishfully to the Minister’s consideration of what the hon. Gentleman has asked for, and I think this has been a very positive debate. Seasonal workers are needed quickly, and there should be an easier and more streamlined way for them to access sponsorship, to be gainfully employed and to be able to move through employment. That is why I supported the hon. Member in his call for reform of the tier 2 visa system and the introduction of a certificate of common sponsorship. That is needed greatly within my constituency of Strangford and other rural constituencies. We need seasonal help and an easier and more cost-effective system to navigate. For many, it is bureaucratic—red taped—and we must ensure that that is not the case. The proposed change would allow migrant healthcare workers, for example, to switch employers within the sector without putting their visa status at risk. That would provide greater job security and better protection from exploitation, which all Members who have spoken have referred to. I am sure that the Minister truly desires that, and I await with great interest the Minister’s comments on how we can improve and streamline this process for even more people. I also look forward to the contributions of the shadow Minister, the hon. Member for Weald of Kent (Katie Lam), and the Liberal Democrat spokesperson, the hon. Member for Hazel Grove (Lisa Smart). The fact is that these people are not coming to claim benefits but to work. Sometimes we should focus on the clear and positive contributions that they can make, often in industries where we cannot find and supply our own workers. I know a number of agrifood businesses that spend a great deal of their resources on filling out the applications. To be clear, I believe in the visa system—I understand it, I know why it is there and I support it as it is—but I also believe in checks and balances. There should be the ability to offer protection to workers in sectors that are crying out for help. That is why I am happy to support the hon. Member for Poole. It would be a simple and direct change, and one that could make all the difference. I highlight the fact, and make a plea to the Minister, that we still have to get the fishing crew visa situation sorted out. That, too, must be done. Specifically, I have a plea for the Minister. Over the years, in all my time here—I have been 14 years here as an MP—I have supported our visa system, which has worked. Unfortunately, the previous Government—I am not being disrespectful, just honest—put the threshold up to such a level that those who applied for visas, and the fishing boats who would employ those people, were unable to meet it. If the Minister is happy to do this, and I hope she will be, will she would meet me and some of the fishing organisations to discuss how we can better have a threshold that the fishing boat owners can meet and that gives a living and good wage to the people who come across? The Northern Ireland Fish Producers’ Organisation is keen to find a way forward. Will the Minister agree to a meeting with the fishing sector and me to discuss such matters? To close, I know that the Minister has a desire to facilitate those who wish to come to work and to add to our economy and community—they do so, and they are positive in their contribution. I believe that this suggestion is one that could safely be taken up to allow sponsors and indeed workers a cost-effective and streamlined approach.

• 22 Jan 2025 · Child Arrangements: Presumption of Parental Involvement · Hansard source

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  I commend the hon. Lady for raising this massive issue—well done for bringing it forward. In the world we live in, it is always the most innocent—the children—who suffer the greatest in a family breakdown. Does she agree that we must do more to ensure that, where there are doubts about safety, we should utilise supervised parental visits? Getting this right is an essential part of the battle against violence against women and children.

• 22 Jan 2025 · Public Services: Rural Areas · Hansard source

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  I am pleased to see the hon. Gentleman in his place, both as the special envoy for freedom of religion or belief and because I understand it is his first Adjournment debate. I wish him well—he is using his time well. He has lots of time; he can go to 7 o’clock if Madam Deputy Speaker does not take exception. One issue in my community and countryside, and the constituency I live in, is mental health—I do not know whether the hon. Gentleman has had the chance to mention that. The hon. Member for Glastonbury and Somerton (Sarah Dyke), who is sitting in front of me, always speaks about farmers living alone, independence, and the pressures of life, and never more in all my life do I remember those pressures being this intense. Does the hon. Gentleman have similar problems in his constituency to those I have in mine?

• 22 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Money) · Hansard source

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  On a point of order, Madam Deputy Speaker. The right hon. Member for North West Hampshire (Kit Malthouse) made a comment that I feel impinged upon my integrity. I have spoken to the right hon. Gentleman and he knows what I am referring to. I underlined and highlighted that the Terminally Ill Adults (End of Life) Bill Committee went into private session; some 15 Members, who support the Bill, voted for the private session and nine Members, who oppose the Bill, voted against the private session. The record must be corrected about what the right hon. Gentleman said about the comments I made about that. Facts are facts; they matter to me, as does my integrity.

• 22 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Money) · Hansard source

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  There are concerns from those of us who voted against the assisted dying Bill. I understand the process, and how it works with the money resolution coming forward, but on the day that this was finalised I asked a question, and the make-up of the Committee was 15 of those who voted for the Bill, and nine who voted against. A secrecy process has now been brought into the Bill, and we do not know what is happening. That is against the rules of this House. The second thing they have done is the issue of withdrawing the opinion of the judges, which is also out of order.

• 22 Jan 2025 · Competition and Markets Authority Chairman · Hansard source

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  I thank the Minister for his answers. The role of the CMA chair is essential in the current economic climate, as we watch how our allies in the USA approach their trading and their deals. We need a message of strength; we need to relay the fact that we are ready and open for international business. Does the Minister believe that this interim measure sends that message, and how quickly can we get the right person in place to promote our business standing?

• 22 Jan 2025 · Russian Maritime Activity and UK Response · Hansard source

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  I thank the Secretary of State very much for his statement. Nobody can be in any doubt whatsoever about the strength of his words on what it means for us in the United Kingdom to stand firm. We thank him for that determination and his strong voice, which we in this Chamber all support. When the naval crew of HMS Somerset were called back to their ship on Christmas day, the message was clear: the Russians do not take a holiday, but neither do our Royal Navy crews. Russia’s perpetual activity in pressing towards our boundaries outlines the need for the complete preparedness of our Navy. Will the Secretary of State outline whether greater support is needed to ensure that our Navy is at full strength, given that our service fleet is now smaller than those of France and Italy?

• 22 Jan 2025 · Listed Places of Worship Scheme · Hansard source

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  It is a pleasure, Mr Western, to serve under your chairship, and I thank the hon. Member for Bromsgrove (Bradley Thomas) for securing this debate for his contribution. We wish to see the heritage and faith that we have in this country continue. The preservation and support of places of worship is not just a matter of heritage or architecture, although such places are a crucial part of the national heritage; they also provide hundreds of millions of pounds to the economy. However, the £30 million allocated for them annually is only a fraction of what is needed. Strangford, my constituency, is a place steeped in history and tradition, where faith has been central to the community for centuries. It would be a tragedy both spiritually and culturally if places such as St Margaret’s church in Westminster, which is just across the road from Westminster Hall, or the many churches across this land no longer fulfilled their intended purpose, which is to be living places of faith and community. It is crucial that the Government recognise that these buildings are not simply structures, but are central to the mission of the church, serving as a base for critical community outreach. They are sanctuaries—places where people come together for worship, prayer and fellowship. They are places where the community comes together to support one another—to be the hands and feet of God in this world. The National Lottery Heritage Fund has been encouraged to support some churches with community projects and parks. St Mark’s church in Newtownards, the parish church in my local community, received money from the fund and is now a community hub, hosting groups representing every age from birth to the twilight years. Indeed, many churches are the driving forces behind volunteer-based care for the elderly, the disabled and marginalised groups. The Government must acknowledge the vital role that the Church plays in the fabric of our society, not only in maintaining cultural heritage, but in providing essential social services. To that end, the Government should act decisively. By expanding the listed places of worship scheme and encouraging the National Heritage Lottery Fund to allocate more resources, ensuring that funding is available for all necessary repairs, whether they are urgent or preventive, the Government can ensure that churches, cathedrals and abbeys continue to be the heart of British life, preserving our heritage while serving our community, and preaching the gospel and the word of God as it is in the Bible.

• 21 Jan 2025 · Former Mineworkers’ Pensions · Hansard source

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  Mr Speaker, I spoke to the Minister beforehand, so he knows where I am coming from with my question. I understand that some families of those affected who have passed away have retired to Northern Ireland, and they deserve their pensions. That being the case, has the right hon. Gentleman had an opportunity to ascertain the numbers of those in Northern Ireland who will qualify for such pensions, and will he chase up those people to ensure they get the moneys they deserve?