Westminster Hall

Thursday 23rd January 2025 Westminster Hall

Thursday 23 January 2025

[Sir Desmond Swayne in the Chair]

Backbench Business

International Day of Education

Thursday 23rd January 2025 Westminster Hall

13:30

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

I beg to move,

That this House has considered the International Day of Education.

It is a pleasure to serve under your chairmanship, Sir Desmond.

Tomorrow, Friday 24 January, we mark the United Nations International Day of Education. As we do so, we will be reminded of the transformative power of education. It is the cornerstone upon which societies are built, economies are strengthened and individuals are empowered. Education is not merely a privilege; it is a fundamental human right. Article 28 of the UN convention on the rights of the child enshrines that right.

However, as we reflect on our global commitments, particularly sustainable development goal 4, which aims to ensure inclusive and equitable quality education and to promote lifelong learning opportunities for all, we must confront the stark reality that progress has been uneven and significant challenges remain if we are to reach SDG 4 targets. In considering the progress towards some of the SDG 4 targets, I will focus first on target 4.1:

“By 2030, ensure that all girls and boys complete free, equitable and quality primary and secondary education leading to relevant and effective learning outcomes.”

Since the adoption of the 2030 agenda, strides have been made in expanding access to education, and enrolment rates in primary education have increased globally. According to the UNESCO Global Education Monitoring Report 2024, 110 million more children and youths have entered school since SDG 4 was adopted in 2015, and there is a growing recognition of the importance of quality education, with 40 million more young people completing secondary education today than in 2015.

However, those achievements mask deep disparities. According to UNESCO, approximately 251 million children and youths are still out of school worldwide, which means that since 2015 the out-of-school population has reduced by only 1%. Some 33% of out-of-school children and youths are from low-income countries, in contrast to only 3% from high-income countries, and over half of all out-of-school children and youths are in sub-Saharan Africa. We have also seen the terrible impact of the policies of the Taliban in Afghanistan, which have deprived girls of their right to education. Urgent action must be taken by the international community to ensure that these regional disparities are urgently addressed if we are to meet the SDG 4.1 target.

Crises such as conflicts, natural disasters and public health emergencies pose formidable barriers to education. In 2016, 75 million children did not have access to quality education due to forced displacement, humanitarian crises and climate change events. Nine years later, that figure has trebled to 224 million. Even children who do have access to school are not learning the basics, with over half those children—127 million—not meeting the minimum standards of literacy and numeracy.

There has been a regression in meeting both SDG 4.5, which is about eliminating all discrimination in education including for children in vulnerable education settings, and SDG 4.6, which is about ensuring all youths achieve a minimum standard of literacy and numeracy. That is deeply worrying, with UNICEF reporting that 70% of children in low and middle-income countries are unable to read a simple story by the age of 10.

The root cause of these crises, which disrupt education, needs to be tackled by the international community. UNICEF estimates that climate change alone disrupts the education of nearly 40 million children every year. In countries affected by emergencies, children lose access to safe drinking water, healthcare and food, alongside their education. Schools, which should be sanctuaries of learning, are often the targets of attacks. Between 2015 and 2019, attacks on education were reported in 93 countries. More recently, in Gaza ongoing conflicts have devastated educational infrastructure and left more than 1 million children in Gaza in dire need of educational support.

In Sudan, more than 17 million children are not in education, and schools are often used to house displaced children. In the eastern part of the Democratic Republic of the Congo, more than 1.3 million children are out of school because of an escalation of violence, and children also risk being killed, maimed, abducted, abandoned and recruited into armed groups. Closer to home, the impact of the war in Ukraine has also had a devastating effect on children’s education.

Organisations such as Education Cannot Wait have been instrumental in addressing those challenges. As the global fund dedicated to education in emergencies, Education Cannot Wait works to ensure that children in crisis settings receive uninterrupted education. Its multi-year resilience programme and emergency first responses have reached millions of children worldwide.

Adequate financing is pivotal to achieving SDG4, yet education often receives less than 3% of humanitarian aid. According to research by UNICEF, children-focused overseas development aid fell by 56% from 2016 to 2022; in the UK, it fell from 11% to a shocking 4% over the same period. The International Parliamentary Network for Education estimates that the annual financing gap for achieving SDG4 is £100 billion.

The funding gap is exacerbated by the debt burdens of low and middle-income countries; in some cases, the interest owed to private creditors is more than those countries’ entire education budgets. Christian Aid’s report “Between life and debt” found that 25 African countries spend more on repaying debt than they do on their education budgets, including in Kenya, Nigeria, Ethiopia, Zambia and Malawi. Unless there are international structural changes to tackle unsustainable debt, education in low-income countries will never get fixed, and that will hamper efforts to provide quality education, particularly in low-income countries and crisis-affected regions. Education is one of the most underfunded areas of humanitarian law, receiving only approximately 3% of international humanitarian funding. That is clearly not enough.

One of the central tenets of achieving SDG4 is teachers. There is a global shortage of teachers: the National Education Union estimates that roughly 44 million additional teachers will be required, 15 million of those in sub-Saharan Africa, to meet sustainable development goals for education. To achieve that ambition, we need a new global teacher strategy to train, recruit and retain qualified teachers in the global south.

In many low-income countries, there are huge pressures on teachers, including with regard to working conditions, class sizes and equipment. Teachers are also often the victims of attacks, and in some instances they are denied regular pay. The UN has recognised this as an important issue, especially in low-income countries with fragile economies. A key recommendation of the UN high-level panel on the teaching profession was the creation of a global fund for teachers’ salaries, so that children can continue to receive education during crises.

I have a number of questions for the Minister before I conclude. The first relates to international education aid. Will the Government bolster their financial contributions to global education initiatives and ensure that funds are directed towards the most marginalised and crisis-affected children? That would include supporting organisations such as Education Cannot Wait and UNICEF, which are on the frontlines of delivering education in emergencies. Breaking down barriers to opportunity was one of the Labour party’s key missions. Will the Minister confirm that as aid funding for education aligns with that mission, education will receive the priority it deserves?

I also want to ask the Minister about advocacy for safe schools. As I mentioned earlier, a significant factor in children’s not receiving education is conflict. Can the Minister advise me whether the Government will champion the protection of educational institutions in conflict zones? By supporting the safe schools declaration and advocating for the adherence to international humanitarian law, we can work towards ending attacks on education.

As I mentioned earlier, teachers are the backbone of education systems. Providing them with adequate training, resources and support, especially in emergency contexts, is crucial, as is ensuring they are paid for the work they do in very difficult circumstances. Do the Government support the creation of a global fund for teachers’ salaries to help pay for teachers in conflict areas?

Finally, on the promotion of inclusive education, children with disabilities are doubly disadvantaged in receiving education in crises. Can the Minister advise whether the Government will support programmes that target providing education for children with disabilities in crises?

[Alice Macdonald (Norwich North) (Lab/Co-op)]

I thank my hon. Friend for giving way and for securing this debate. It is a pleasure to serve under your chairmanship, Sir Desmond.

One of the key barriers for all children, particularly children with disabilities, is inadequate access to water and sanitation. Some 200 million children do not have a toilet at all in school, and that issue affects 50% of schools in sub-Saharan Africa. Does he agree it is also important to look at the other sustainable development goals, including SDG6 on water and sanitation, to ensure that efforts are joined up?

[Bambos Charalambous]

My hon. Friend makes an excellent point. SDG4 should not be seen in isolation. We need to target a number of SDG goals to make sure children receive the education they need. Water and sanitation is clearly one of the top ones that we need to target. I thank my hon. Friend for making such an excellent point.

I conclude by saying that education is a beacon of hope in the darkest of times. It is the key to breaking cycles of poverty, fostering peace and building resilient societies. As we mark the UN International Day of Education, let us reaffirm our commitment to ensuring that every child, regardless of their circumstances, has access to quality education. The challenges are immense, but with a collective will and concerted action, we can turn the tide. The UK has both the responsibility and the capacity to lead in this endeavour. Let us seize the moment to make a lasting difference in the lives of millions of children worldwide.

13:42

[Richard Foord (Honiton and Sidmouth) (LD)]

It is an honour to serve under your chairship, Sir Desmond. I am grateful to the hon. Member for Southgate and Wood Green (Bambos Charalambous) for securing this debate.

Education is what we think of when we want to invest in the future. So much of what we discuss in Parliament is about conflict, aid and the present, but education is investment in the future. As we mark the United Nations International Day of Education tomorrow, I want to highlight the case study of Sudan.

The United Nations has warned that over 19 million school-age children lack access to education in Sudan. To put that into context, we have about 14 million children in the UK, most of whom are receiving some sort of education and most of whom are in school. The 19 million who are not receiving education in Sudan makes this one of the worst education crises in the world. Schools there have been destroyed, teachers have fled and classrooms have become shelters for displaced families. According to UNICEF, 171 schools are now being used as emergency shelters.

The conflict has also brought on the awful concept of the child soldier, and child recruitment into armed groups is rife. An entire generation is growing up without education. The war in Sudan, like many other global conflicts, will have some lasting consequences. These ongoing attacks, some of which are on children, persist, as warring factions violate one of the most basic principles of the law of armed conflict: protecting children. With schools often targeted or repurposed, learning is being disrupted not just for those who are child soldiers or involved as combatants, but for others. The loss of education will have profound, long-term repercussions for those individuals, including reduced incomes, poorer health outcomes and limited opportunities. For the society of Sudan as a whole, it will lead to cycles of poverty and instability in the future.

According to the United Nations, the education crisis in Sudan is

“the worst education crisis in the world”.

When schools close, children become vulnerable to various risks, including exploitation, forced recruitment and abuse. The psychological toll leaves many children unable to resume their normal schooling, even when schools reopen. As of December 2024, over 14.8 million people have been displaced in Sudan—11.5 million of them internally displaced. This is the largest displacement crisis in the world, and over 53% of those displaced individuals are children. With school buildings converted into shelters, children have now gone 22 months without education. The educational facilities themselves have been attacked; they have been destroyed, looted or occupied. Children who once attended school every day are instead working in markets, polishing shoes and performing manual labour to survive. That forced separation from school, as well as from their fellow school pupils, is making it increasingly unlikely that they will return to school even when the conflict abates. The chance that these children who are exposed to violence go on later to perpetrate violence themselves is greater, and, even if they do not do that, they are more likely to underachieve or drop out.

I will focus on the work of a small charity because I want there to be a note of optimism in this otherwise pessimistic window on what is going on in Sudan. Windle Trust International has operated in Sudan since 1999. It provides educational opportunities for refugees and internally displaced people. Before the current war, the organisation ran eight schools in Khartoum and two for Ethiopian refugees. It supported 426 refugees from Chad, the Central African Republic, South Sudan, Eritrea, Ethiopia, Yemen, Somalia and Syria, and partnered with 42 universities to offer higher education scholarships. It provided 558 university scholarships, supported more than 68,000 girls to stay in school, and trained nearly 9,500 teachers.

The effect of the war on Windle Trust International is that it has had its offices in Khartoum looted, its staff scattered and its operational funding curtailed. This has caused the closure of programmes and the ending of staff contracts. None the less, it is still able to operate a presence in Blue Nile State, where a smaller field office supports Ethiopian refugees in a camp that hosts approximately 12,000 people, 58% of whom are of school age. Windle Trust International does receive some funding from the United Nations High Commissioner for Refugees, but that is barely enough to cover two schools, teachers’ salaries, uniforms, education materials and training, so it is a pretty dire circumstance for a small NGO operating in-country.

The Sudanese Government at federal and state levels can no longer adequately sustain their own education system. Teachers have gone unpaid for 22 months and reports indicate that 10,000 children have been recruited into armed groups. Education in conflict zones is their way out. Beyond imparting academic skills, schools can provide routine, security and hope. Where education is withheld, children suffer harm, lose future opportunities and lose the recovery prospects of their country as a whole. If Sudan fails to educate a generation of its children, its path towards development—and, ultimately, a growing economy—will become increasingly difficult.

I want to close by thinking about financial support for organisations operating in country, and education that is provided through what was the Department for International Development and is now the Foreign, Commonwealth and Development Office. We have had a cut in the development budget in the UK from 0.7% to 0.5% in the last few years, and that is currently being exacerbated by the use of official development assistance funding. The UK’s Independent Commission for Aid Impact, or ICAI, has oversight of that funding, and it has pointed to how £4 billion of it is being spent on asylum hotels, for example, when it could go so much further if it were spent in country on such things as education. The purchasing power that we would have by spending overseas as opposed to in the UK would be so much greater. Other countries do not do things this way; Sweden limits its in-donor refugee costs to a maximum of 8% of its aid budget, and Austria and Luxembourg declare no asylum costs as official development assistance. This is a choice that the UK Government are making right now.

In any comprehensive response to Sudan’s crisis, education must be prioritised as long-term development, not just the conflict aid we think of, such as food, shelter and healthcare. Small NGOs like Windle Trust International are doing their very best to facilitate that, but they could do so much more if the west—and the UK Government, for example—were to step up in support.

13:51

[Jim Shannon (Strangford) (DUP)]

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.

14:06

[Monica Harding (Esher and Walton) (LD)]

It is a pleasure to serve under your chairmanship, Sir Desmond. I thank the hon. Member for Southgate and Wood Green (Bambos Charalambous) for securing today’s debate. As he pointed out, quality education is not just an important sustainable development goal, but an integral part of the achievement of all SDGs. It enhances individual productivity, fosters economic growth, builds resilient communities in fragile states, develops skills for quality work opportunities, challenges harmful discrimin-atory values, and promotes peace, the rule of law and respect for human rights.

Every child has a right to a quality education, no matter who they are or where they live, yet more than 250 million children worldwide are out of school, and marginalised groups such as girls, children with disabilities and those from remote or conflict areas bear the brunt of that exclusion. For example, in Afghanistan, the Taliban has created the world’s most egregious women’s rights crisis, with restrictions impacting access to secondary school and higher education for 1 million girls and women.

The provision of inclusive, equitable education is fragile in many more states than I have time to mention. Nigeria accounts for 20% of all out-of-school children in sub-Saharan Africa, and it would take Pakistan at least 50 years at the existing rate to enrol all girls in school. A September report from the United Nations Relief and Works Agency suggests that children’s and young people’s education in Gaza will be set back by five years, risking a lost generation of permanently traumatised Palestinian youth. With a ceasefire now in place, it is vital that the UK Government scale up the spending on education in their humanitarian response. Satellite images verify that more that 90% of schools in Gaza have been damaged and that no universities are still in place.

As my hon. Friend the Member for Honiton and Sidmouth (Richard Foord) pointed out, the lack of education in conflict and post-conflict zones puts children at further risk. These are traumatised children. Our own experience here in the UK during the pandemic showed that a school fulfils so much more than an academic responsibility; it is the frontline for a child’s wellbeing and development.

The UK has been proud to stand as one of the largest donors to global education, and has consistently advocated for the transformative impact of education, but UK funding for global education has steadily declined over the past decade—from 13.5% of bilateral official development assistance in 2013 to just 3.5% in 2023. Of course, that is in part a result of the ODA budget being cut from 0.7% to 0.5% of gross national income, but education has faced much sharper cuts than other sectors, decreasing by 40%, compared with an average 25% decrease in other sectors. Can the Minister outline what steps the Department intends to take to remedy this disproportionate budget cut to global education in the next financial year? I note that the Government have commissioned three reviews of their international development policy, so I would be grateful to hear from the Minister when those will be published and what commitments will be made on education, including girls’ education, for the upcoming financial year.

As we commemorate the International Day of Education, let us be reminded that by investing in inclusive and equitable quality education, we are not only fulfilling a fundamental human right, but paving the way for a more prosperous, just and sustainable future for us all.

14:10

[James MacCleary (Lewes) (LD)]

It is a pleasure to serve under your chairmanship, Sir Desmond. I echo others in thanking the hon. Member for Southgate and Wood Green (Bambos Charalambous) for securing this valuable debate.

Tomorrow, on the United Nations International Day of Education, we must turn our attention to a fundamental truth: education is the foundation of opportunity, equality and progress. This year’s theme could not be more relevant as we grapple with the rapid changes reshaping our world. Sustainable development goal 4 is a bold commitment to deliver quality education for all, yet with just five years left until 2030, we are worryingly off-track. Across the globe, nearly half of primary schools cannot cater for children with disabilities, and more than 20% lack basic sanitation for girls. Those are stark reminders that millions of young people are being denied their right to learn.

Conflict has only made matters worse. In Ukraine, more than 7,000 schools are out of action, and millions of children have seen their education upended. And it is not just Ukraine: as my hon. Friend the Member for Honiton and Sidmouth (Richard Foord) said, Sudan has suffered greatly, as have other places, including Syria and Gaza. Education is often a casualty of war, and the future of too many children hangs in the balance.

Closer to home, although there have been some improvements in the global rankings, our own education system faces significant challenges. Teacher shortages, overstretched special educational needs and disabilities funding, and falling programme for international student assessment scores paint a picture of a system that is struggling to meet the needs of today’s pupils.

Meanwhile, on the international stage, the UK Government’s decision to slash bilateral aid for education from £757 million in 2017 to just £336 million last year is deeply shameful. I look forward to hearing the Minister’s comments on what the Government aim to do to address those massive cutbacks, which have affected global education so much.

Education is not just about classrooms and textbooks; it is also a catalyst for progress, prosperity and peace. For the Liberal Democrats, that is non-negotiable. We would reverse the aid cuts, commit 15% of our development budget to education and prioritise support for women and girls. We would also create a UK sustainable development goal tsar to ensure real accountability for delivering SDG4 at home and abroad. Let us not forget that education transforms lives. It is the great leveller, opening doors to opportunity and hope. As we mark the International Day of Education, let us commit to ensuring that every child, wherever they are, has the chance to learn and thrive.

14:13

[Wendy Morton (Aldridge-Brownhills) (Con)]

It is an absolute pleasure to serve under your chairmanship, Sir Desmond. I congratulate the hon. Member for Southgate and Wood Green (Bambos Charalambous), the chair of the all-party parliamentary group on global education, on securing the debate. I am grateful to Members for their contributions, and I have to single out the hon. Member for Strangford (Jim Shannon), who, as always, demonstrated his vast knowledge and understanding of international development matters.

As we mark the UN International Day of Education, I am reminded of the inextricable link between education and international development. We see that reflected in UN sustainable development goal 4, and the work the Conservative Government did to expand access to education, particularly for women and girls worldwide. Remarkable progress has been made, but we must remember the challenges we face around the world. There is of course much more to do, but we are clear that education is one of the best investments we can make.

Since 2015, we have supported 19.8 million children, including more than 10 million girls, to gain a decent education. We know that girls’ education, alongside all its intrinsic benefits, leads to safer and more prosperous societies, more effective peacebuilding, gender equality and greater resilience against climate change. In 2023, we launched the international women and girls strategy, which set the approach for the rest of the decade by placing women and girls at the heart of the work of the Foreign, Commonwealth and Development Office.

To be clear, we do not value boys’ education any less highly; on the contrary, only by involving boys and men can we address harmful gender stereotypes and break down the barriers that often hold women and girls back. I have asked the Government before about their plans to build on our work on the international women and girls strategy. I would appreciate a clear reassurance from the Minister that she has no plans to tinker with it, and that she will simply get on with what we started rather than risk the hard-won progress that has been achieved.

As the Minister knows, making progress in education is possible only if we work with the right partners, and that is why in government we were the top bilateral donors to the multilateral education funds: the Global Partnership for Education and Education Cannot Wait. Together, they reach more than 80 countries, including in the most conflict-affected areas. GPE reports that it has reached 253 million children in partner countries since 2022; and as the Minister said recently, ECW, the global fund for education in emergencies, recruited or financially supported 23,449 teachers in 2022-23 alone. What are the her plans for supporting global education funds such as GPE and ECW, and what representations is she making to the Treasury ahead of the spending review?

Education was embedded in our international development work in government. That was reflected in the three Es of the international women and girls strategy:

“Educating girls, Empowering women and girls and championing their health and rights and Ending gender-based violence.”

Those priority themes represent the areas where the challenges are most acute but the potential gains are greatest, and where the UK is best placed to add value and catalyse progress.

Like the international women and girls strategy, our 2023 international development White Paper is a road map to 2030. In the White Paper, we identified UK higher education and research as important partners in delivering development. Through direct research, international education, student links and scholarships, our education, science and research institutions are part of how the UK builds capacity with development partners.

Both of the first malaria vaccines to be recommended by the World Health Organisation drew on UK science and health expertise. Yesterday—22 January—marked exactly one year since the roll-out of the first malaria vaccine, which has now reached children in over 17 countries. The first, Mosquirix, was developed by GSK, a British company, and the second, R21, at the Jenner Institute at Oxford University. Given that impactful legacy from our time in Government, I ask the Minister how she plans to build on our support for the education and research sectors. I am sure she understands that continuing to leverage home-grown excellence will be crucial in achieving our development objectives.

I will turn to the development review. I know the Minister has received extensive evidence from Baroness Shafik, who has now submitted that independent review to her and the Foreign Secretary. I understand that they are currently considering the findings, and we eagerly await their plan to publish them. I give the Minister the opportunity in this debate to commit to engaging with Members on both sides of the House and to publishing the findings in full. I also invite her to share with us whether the review has considered education, as she will recognise the interest that hon. Members rightly have in that area.

Before I conclude, I will touch on two deeply concerning contexts. First, in Afghanistan, an estimated 3.7 million children are out of school, 60% of whom are girls. The Taliban blocked women and girls from pursuing secondary and higher education over the age of 12, and recently suspended access to medical education following the closure of many other educational routes. Will the Minister update us on the bilateral and multilateral discussions she is having to mobilise action on women and girls’ education in Afghanistan?

Secondly, I will mention Myanmar, because we are concerned that 4 million children are currently out of school due to the humanitarian situation. I understand that the Government are taking a highly localised approach to aid delivery in Myanmar, and I appreciate that the Minister will not necessarily be able to speak in detail about local partners in order to protect their safety. However, I would be grateful if she could update us on some of the work that she is doing to help with access to education in Myanmar.

Quality education is an integral part of international development, and, as we mark the UN International Day of Education, let us celebrate our successes while remaining vigilant towards the challenges that we face today. The UK has a key role to play in working with partners and leveraging home-grown expertise to support education worldwide alongside our other international development objectives.

14:20

[The Minister for Development (Anneliese Dodds)]

It is a real pleasure to speak in this debate with you in the Chair, Sir Desmond. I am grateful to my hon. Friend the Member for Southgate and Wood Green (Bambos Charalambous) for securing this important debate on the eve of the UN International Day of Education. I am grateful to all hon. Members for the important points that they have raised during our relatively short debate. We have heard some illuminating speeches and I will do my best to respond to the many important points raised.

As many hon. Members have said, although there have been many improvements, such as in the absolute number of children able to access education, we know that education overall is in crisis. Globally, 250 million children and counting are not in school. As we have heard, poverty, gender, disability and lack of schools or teachers, particularly trained teachers, all play a part in that.

The climate crisis and conflict are now disrupting the education of more than 220 million children and counting every single year. Last year alone, extreme weather events meant that children in low-income countries missed out on 18 days of school. As I discussed with some young people in South Sudan, the children who are flooded out of their schools during the rainy season are the same children who are not able to learn because it is too hot during the dry season. That means that in many of those countries, some children are missing up to a whole month of school. Millions of the children who are in school are not learning effectively, including the 70% of children in school in low and middle-income countries who are still unable to read a basic text by the age of 10.

Young women and girls are disproportionately affected by all that, so I am grateful to the Opposition spokesperson, the right hon. Member for Aldridge-Brownhills (Wendy Morton), for raising the situation for women and girls, as she has done frequently. That particularly applies when it comes to access to higher and further education. If we look at sub-Saharan Africa, for example, only 7% of eligible women are enrolled in universities and colleges, compared with the global average of 42%. I am pleased that the right hon. Lady also mentioned the role of the UK’s higher education sector in this context, because it is incredibly important to bring in that expertise. We are seeking to build that; I recently met Baroness Smith and other experts to talk about the UK’s international education efforts.

When we consider that every additional year of learning provides a 10% increase in later earnings annually, it is clear that education has a key role to play in tackling poverty and supporting resilient, long-term growth. The hon. Member for Esher and Walton (Monica Harding) ably set out how important education is not just economically, but for so many other things, such as stability, security, healthcare and other outcomes that we need to see. She has considerable expertise in this area, given her previous roles with the British Council. However, we know that the financing gap for education in low and middle-income countries is an estimated $97 billion every year. More than 60% of that gap is finance that would be provided by the Governments of those countries.

When we look at the overall contribution of official development assistance to education, we see that it makes up 3% of education budgets. As was mentioned rightly by my hon. Friend the Member for Southgate and Wood Green, who is really passionate about this issue, some 3.3 billion people are now living in countries that are spending more on servicing their debt than they are on the health or education that would underpin long-term, resilient and inclusive growth. All of that comes at a time when populations are on the rise in sub-Saharan Africa.

In short, we need the kind of massive global effort that many Members have said is necessary during this debate, to ensure that people are provided with a quality education. Over the last six months, I have been making the case for action around the world, from South Sudan to the General Assembly of the United Nations in New York, and at the World Bank in Washington and the COP29 climate summit in Baku. I also met the young people from across our country who have been championing global education in schools when they came to Parliament —perhaps other Members also met them; they were incredibly powerful advocates.

The UK is determined to work in genuine partnership with like-minded donors, multilateral organisations and countries and communities across the global south, so that we address the global learning crisis effectively and efficiently. Consequently, today I will highlight four areas that correspond to points raised by hon. Members.

First, we are making foundational learning for all a priority. That means using the best available evidence to support reforms and helping Governments to provide all children with the building blocks for their future. That work uses UK expertise to focus on foundational mathematics, and I saw how it made a huge difference when I was in Malawi. It involved moving away from rote learning, which often does not teach children the skills they need. Such work is important not just for numeracy, which I mentioned, and literacy; it is also important for the development of social and emotional skills, so that we can prepare children and young people to navigate a rapidly changing world.

Of course, we also need to target the most marginalised groups, including those living in poverty or conflict, refugees, those caught up in crisis, and girls; we seek to do that. The Opposition spokesperson, the right hon. Member for Aldridge-Brownhills, mentioned the international women and girls strategy. She will know that where the previous Government aimed to make sensible reforms, my approach and the Government’s approach is not to put those plans in a drawer and not enact them. We are determined to make progress speedily. Of course, we must ensure that the strategy is up to date. However, we will not say that the main tenets of those reforms—especially those around education for girls, which we have been discussing—should not be held to in the future. We really want to enact those reforms—it is the key thing for us—and to embed long-term progress.

My hon. Friend the Member for Southgate and Wood Green rightly mentioned disabled children, and Myanmar was equally rightly mentioned by the Opposition spokes-person. This morning, I met—virtually, obviously—some education specialists based in Myanmar. As the Opposition spokesperson rightly said earlier, given the regime in Myanmar and how it operates, I cannot go into a huge amount of detail about exactly which organisations are involved. However, I am really proud of the fact that the UK is working directly with local communities and local experts, so that children, including disabled children and children who have had limbs amputated because of landmines or because other problems have befallen them, can access education. That is really a case where, as my hon. Friend said, education is not just a privilege but a right for children, including disabled children.

I should also inform the Chamber that in October, we announced that the UK will launch a global taskforce to tackle sexual and physical violence, and psychological harm, in and around schools. Horrific abuse, both within schools and outside them, devastates lives, and it accounts for about 5% of school drop-outs and lower attainment worldwide. My hon. Friend the Member for Southgate and Wood Green rightly raised that issue. We have to make sure that schools are safe. We are determined to advocate for that, which is in line with the fact that the UK is of course a signatory to the safe schools declaration. I am grateful to the previous Government for signing up to that declaration; it was right that they did so.

Of course, safety also has to be provided when it comes to freedom of religion and belief. I was grateful to the hon. Member for Strangford (Jim Shannon) for raising that issue, which he always champions, and I thank him for his kind words. It is absolutely right, as he said, that education provides dignity, and that a lack of literacy, numeracy and other skills disempowers people and prevents them from being able to make the choices that they might need to make for themselves and their families.

The hon. Gentleman also talked about the schoolgirls abducted in Nigeria. I have talked to schoolgirls in Zambia and I remember that they get up at 5.30 am to clean the place where they live. They were young—some as young as 13—but they do all the cooking for the household. They get ready to learn and they learn all day. They are thirsty to learn; they are determined to learn. We must always ensure that they have the safety that is surely their right, wherever they are in the world.

Secondly, we are scaling up finance for education around the world and seeking to make it smarter. We are sharing our trusted research and evidence to encourage philanthropic organisations to collaborate more and maximise our impact. We are pivoting away from funding education directly and towards helping Governments improve the way they support the sector for the long term, particularly with partners across the global south.

We are making the most of UK expertise and our diplomatic reach to champion innovative new ways to mobilise finance. The UK plays an important role in developing the international finance facility for education, which provides a sevenfold return on investment—it really is an incredible instrument and provides exactly the kind of multiplying effect we need to have on the funding available. We are now calling on others to join us in backing it. Together, we can unlock $1 billion in additional affordable finance for lower and middle-income countries’ Governments. Thirdly, we are determined to ensure that more children are safe and able to learn; that includes those, mentioned by many hon. Members, who live through conflict and in communities affected by the climate and nature crisis.

As Members have also mentioned, even with the welcome ceasefire between Israel and Hamas, the impacts of that conflict remain devastating for education. In Gaza, 95% of schools have been damaged or destroyed. So in addition to our funding for the UNRWA core budget, the UK is contributing £2 million to Education Cannot Wait and £5.6 million to the Global Partnership for Education, to improve access to education for hundreds of thousands of children across Gaza and the west bank as they start to rebuild. I was pleased that the hon. Member for Esher and Walton and many others mentioned that.

The case of Afghanistan was also rightly mentioned. Appalling measures have been adopted by the Taliban—particularly in relation to girls’ secondary education, but also medical education and so many other areas in that country where women and girls are seeing their rights systematically stripped away. The UK Government are determined to play our part. To support girls in Afghanistan, we are ensuring that at least 50% of our education funding is going to support their education; we are determined to ensure that. We are also advocating more generally for girls and women in Afghanistan. I was recently pleased to announce in this Chamber that the UK is now one of the countries that is politically supporting the case when it comes to Afghanistan on the basis of the convention on the elimination of all forms of discrimination against women.

In November, we announced £14 million for education programmes in Sudan and for Sudanese refugees, where, as has been mentioned, 17 million children have had no access to education since April 2023. I was grateful for the words of the hon. Member for Honiton and Sidmouth (Richard Foord) in that regard. In some areas 90% of children are now out of formal schooling in Sudan. The hon. Member, like the Government, has been determined to not just raise the profile of that appalling conflict, which is the worst displacement crisis in the world, but also to advocate for measures that will directly support Sudanese people; he knows that we have doubled the UK’s support to Sudan and to Sudanese people who have been displaced. We are using every avenue to push for an end to the hostilities and to ensure that international humanitarian law is upheld. Like him, I pay tribute to organisations such as the Windle Trust that are so critical for the education of children in Sudan. I am very proud that it is based in my constituency. It really does impress me that an organisation based in Oxford is having such an impact all around the world.

The role of faith-based organisations was rightly mentioned by the hon. Member for Strangford, because they so often have a huge impact for communities all around the world. I thank him for mentioning that. The use of schools as shelters, which was mentioned in relation to Sudan, was also a problem in Lebanon when there was the crisis there. The UK was determined to ensure that we were playing our part for the children no longer able to go to the schools being used as shelters, and that they would get the emergency education that they needed.

A number of Members raised the issue of funding, including my hon. Friend the Member for Southgate and Wood Green, who asked about overall funding. I confirm that, as well as supporting Education Cannot Wait and the Global Partnership for Education, we have a number of bilateral programmes that focus on promoting learning. We are currently the top bilateral donor to the Global Partnership for Education, and the second largest bilateral donor to Education Cannot Wait. I had the privilege of being at Education Cannot Wait’s annual general meeting. Gordon Brown, the former Prime Minister, is a strong advocate for the organisation and is achieving incredible things with it. We are in the middle of a spending review process and we will, of course, bear in mind hon. Members’ powerful comments about the importance of education as we develop our allocations and decisions for that spending review, both for the immediate future and the longer term. We will update the House on that as soon as is practicably possible.

There are three reviews at the Foreign, Commonwealth and Development Office, one of which, being undertaken by Baroness Minouche Shafik, is specifically focused on development capability and capacity in the FCDO. It comes after many years of a lot of turbulence around the UK’s approach to international development—in particular a huge amount of financial turbulence, which was not helped by the untrammelled growth of in-donor refugee costs in ODA. There was not a consistent approach but we are determined to have a consistent approach for the future. I hope that Members see that in the way that we are facing up to these issues.

On the point about teachers, I am sure that the National Education Union is keen to link its important work with work by Education Cannot Wait and the Global Partnership for Education. Education Cannot Wait provides a lot of support for teachers, including direct financial support, support around recruitment and psychosocial support when teachers are operating in dangerous environments. There is an over-representation of fragile and conflict-affected states in the countries that receive the UK’s contribution to the Global Partnership for Education—60% of our funding to GPE goes to such states. There is a lot of work in this area and I am sure that the NEU will want to engage with it. I would, of course, be very happy to discuss that with the union if that would be useful.

Finally, we are investing to make education systems more resilient to the climate crisis and better able to help students thrive beyond their school years.

[Richard Foord]

Does the Minister agree with the Chair of the International Development Committee, who called the use of official development assistance for hosting asylum seekers in hotels “a spectacular own goal”?

[Anneliese Dodds]

I have enormous respect for the Chair of the International Development Committee and I have had a lot of discussions with her and other members of the Committee on this subject. The decision to count in-donor refugee costs within the overall category of overseas development assistance is, of course, a statistical decision taken by the OECD.

Different countries have had far lower levels of overseas development assistance going into those in-donor refugee costs. They have not seen the untrammelled increases that we saw under previous Governments. As I said, the current UK Government are determined to have a longer-term approach to the issue, and to get the costs down. In fact we have been doing so, as has been reflected in the decision taken by the Chief Secretary of the Treasury to increase the yearly ODA just after the new year. Part of that was from the reduction in in-donor refugee costs. It is a priority for the Home Secretary and the whole Government to ensure that we are dealing with those issues, so I am grateful to him for raising that point.

We are investing to make systems for education more resilient. At COP28 in Dubai, the UK helped to launch a new global declaration on the common agenda for education and climate change, through which 90 countries have now committed to action on climate that helps protect education. Ahead of COP30 in Brazil this year, we are working with our partners to prioritise the role of education in combating the climate and nature crises and to secure further action to protect children, including when they are learning, from extreme weather.

In response to the point made by my hon. Friend the Member for Norwich North (Alice Macdonald), who is no longer in her place, I should say that she is right to underline the relationship between education, water and sanitation. That is important because children should be able to do something as basic as go to the toilet when they are at school; it is particularly important when it comes to girls’ education, because when there is not access to water that poses a particular problem for menstruating girls.

When it comes to resilience, we must ensure that we join up the UK’s strength in artificial intelligence and education technology, and harness their power responsibly so we can support marginalised children, tailor learning to students’ needs and boost the capacity of teachers, enabling them to reach children who cannot join them in the classroom. We are determined to ensure that more children can gain the skills they need to make the leap into higher and further education and employment. Once again, many thanks to all Members who have taken part in the debate. It has been an incredibly important one, and I look forward to the closing remarks.

14:41

[Bambos Charalambous]

This has been a very positive debate, and it is great that there is cross-party support on this important issue. I thank all Members for their contributions and the Minister for her positive response. I look forward to how that investment from the Government is taken forward to build on the previous Government’s commitment to education. The Minister is obviously a passionate advocate for education, and will want to see the fruits of the investments and steps the Government are taking to achieve SDG4 as soon as possible.

Question put and agreed to.

Resolved,

That this House has considered the International Day of Education.

14:42

Sitting suspended.

Rare Retinal Disease

Thursday 23rd January 2025 Westminster Hall

[Dame Siobhain McDonagh in the Chair]

13:44

[Jim Shannon (Strangford) (DUP)]

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.

15:21

[Shockat Adam (Leicester South) (Ind)]

What a pleasure it is to serve under your chairmanship, Dame Siobhan. In my time in the House I have written speeches for Westminster Hall that are five, six or seven minutes long, but by time I get here the Chair always tells me that I have a minute, so I only wrote a minute-long speech.

[Dame Siobhain McDonagh (in the Chair)]

The hon. Gentleman can go on for as long as he likes.

[Shockat Adam]

The hon. Member for Strangford (Jim Shannon) said, “Do what I do and expand it.” This subject is extremely important, and I am so grateful for the hon. Gentleman for bringing it to this Chamber.

Imagine a mother-to-be sitting on a consulting room chair. Her excitement at becoming a mother has been overshadowed by the news that she has been diagnosed with Stargardt disease. It is literally a race against time: will the child be born or will the sight be lost? Imagine a young boy who has expressed his ambition to become a rugby player for England, only for a cursory investigation at the back of the eye to detect retinitis pigmentosa. Unfortunately for me, that was my reality as an optometrist. I faced such heartbreaking cases regularly in my profession.

Rare retinal diseases such as retinitis pigmentosa, Stargardt disease and Leber congenital amaurosis, among many others, are individually rare but collectively very significant. They devastate and destroy lives. The hon. Member for Strangford mentioned Chris, the victor of “Strictly Come Dancing”; he shows the potential of the majority of people with sight loss, but unfortunately that is not the reality for most—their lives are destroyed, their independence is taken and opportunities at work are limited.

The UK Government have committed to tackling rare diseases through initiatives such as the UK rare diseases framework, which aims to improve diagnosis, raise awareness and enhance the access to specialist care. Additionally, a new action plan is set to be released in 2025, showing promise for further progress. But commitments need to translate into tangible action.

Furthermore, we need regulatory bodies such as NICE to play a pivotal role. I fully appreciate NICE’s work to ensure that the quality and safety of treatments can never be compromised—those principles are non-negotiable —but to encourage innovation, NICE must proactively engage with pharmaceutical and medical companies to work collaboratively to establish best practices. Such dialogue will signal to companies that their commitment to researching rare diseases, which costs millions, will be met with the potential for reward. This will ensure that patients can benefit from cutting-edge advancements without delay. As the hon. Member for Strangford said, short-term investment in research and treatment for rare retinal diseases will deliver long-term financial benefits, to the tune of £600 million. It will also reduce lifelong healthcare costs and empower patients to live independent, productive lives.

The eyes are indeed the window of the soul, but they are also the window to our health. So many health conditions are detected in the eyes, and rare retinal conditions can lead to the early detection of other health conditions, such as Behçet’s disease and so many others. We are thankfully on the brink of transformative breakthroughs. Gene therapies such as Luxturna, which is a virus vector-based medication, along with AI-driven early detection and advancements in stem cell research, offer real hope. By supporting those innovations with funding and adaptable regulations, we can bring life-changing treatments to those who need them most.

This is about not just heath but equity and humanity. Without action, we will condemn families to live in the shadow of irreversible loss, because if a person has sight loss, it affects the whole family. With action, we can rewrite their stories and give them hope and vision. Let us act now for that mother, that young boy and the thousands like them. Sight is not a privilege: it is a right.

15:26

[Steve Darling (Torbay) (LD)]

It is a pleasure to serve under your chairmanship, Dame Siobhain.

I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate. He rightly highlighted how inspirational it was to see Chris McCausland winning “Strictly Come Dancing” a few weeks ago. Chris McCausland shared three words at the end of that journey: “opportunity, support and determination”. Those play out well in respect of the challenges we face, which the hon. Members for Strangford and for Leicester South (Shockat Adam) unpacked extremely well.

At an event last night hosted by the all-party parliamentary group on eye health and visual impairment, a gentleman with retinitis pigmentosa told us that when he was diagnosed at the age of eight, his mother was taken aside and told, “This child should be sterilised at a certain age. That is the best way of sorting out this condition.” That is absolutely horrific, and I am heartened that, a little under 50 years later, the world has moved on.

My visual impairment was diagnosed about 45 years ago. I suffer from Stargardt disease, which is one of the two significant areas in terms of inherited conditions. I was deeply upset as a young lad, mostly because I was not able to be a lorry driver; I idolised my father, and that was my aspiration.

Visual impairments have a significant impact on people’s ability to fulfil their aspirations, as colleagues have highlighted, but they also impact opportunities. Twenty-five thousand people across the United Kingdom are affected by such conditions, and 75% of people registered blind are sadly unemployed, so we are condemning people who have drawn from the lottery of life; they are very much more likely to be unemployed than other people in their communities.

I have discovered that the cost of such conditions is £500 million a year, in a number of different pots. That includes not just the cost of medical intervention, but the cost to society of supporting each individual. Some 95% of these hereditary conditions are untreatable, potentially until the not-too-distant future.

The hon. Member for Strangford laid out the challenges for NICE. We are in a perverse situation at the moment—almost an anti-Goldilocks situation—where one falls between two stools: it is a rare disease, but it is a relatively common rare disease, and therefore does not fit within the ultra-rare criteria, so one falls between two stools. I hope the Minister will give serious consideration to the two conditions—retinitis pigmentosa and Stargardt’s—where significant numbers of people will be impacted by falling between those two stools. I reflect again on the words of Chris McCausland: give us opportunity, support and determination.

15:30

[Edward Argar (Melton and Syston) (Con)]

It is a pleasure to serve under your chairmanship, Dame Siobhain, and to do so debating a health matter, as we have spoken many times in the past about health issues. I am very grateful to the hon. Member for Strangford (Jim Shannon), who I call my friend, for bringing forward this debate.

I am equally grateful for the opportunity to serve opposite the Minister. She and I have served opposite one another on many occasions in the past—previously with me on the Government side and her on the Opposition side, but I am getting used to this side of the Chamber now. It is encouraging that she is responding because she engages with these debates and gives genuine answers. The debate will be the better for her being the Minister.

The hon. Member for Strangford has brought forward a hugely important debate, as he so often does. Many important issues rarely get brought before the House, yet we are the poorer for that. This debate might not otherwise have been tabled, but it is right that we debate the issue. I pay tribute to the hon. Member for Battersea (Marsha De Cordova), who is not in the Chamber but has done a lot in the House to highlight the issue in her work with the APPG—it would be wrong not to recognise that in this debate. I also pay tribute to the Royal National Institute of Blind People for its work and to all those who have contributed to raising awareness.

Before I became a Minister in 2018, I was the vice-chairman of the APPG on eye health and visual impairment, so I took an interest in this important issue back then, and it crossed my radar on a number of occasions when I was Health Minister. As the hon. Member for Strangford and the hon. Member for Leicester South (Shockat Adam) set out, while individual rare conditions may be exactly that—they occur rarely, with few people getting them—collectively, rare conditions account for a significant number of the conditions that individuals in this country have.

The hon. Member for Leicester South brought his background and knowledge to bear on the subject, as he does when speaking about these matters. He highlighted the potentially devastating impact that optical and retinal diseases and illnesses can have on someone’s life. A few years ago I did something very trivial; somehow—heaven knows why—a tree branch went right across my eye and cut it. I recovered fully, but for the few weeks that I had the treatment and the cream, it had an impact on my daily life. It was trivial in the great scheme of things—although if untreated, it may not have been—and I can only begin to imagine the impact of some of those conditions, as the hon. Member elucidated.

[Shockat Adam]

The right hon. Member should not feel bad, as that is the most common reason for eye trauma—gardening is the most dangerous sport for eye health. I have met people who lost their sight from a branch scratching their cornea.

[Edward Argar]

In which case, I remain very grateful to the clinicians at the Leicester royal infirmary. The hon. Member will be pleased to know that my wife shares his view about the dangers of gardening, particularly when I am doing it.

As right hon. and hon. Members can see, I am increasingly reliant on my reading glasses and my regular eye tests at Specsavers—other opticians are available. As the hon. Member for Strangford said, that is a reminder of the importance of the issue. A regular eye test not only can detect optical and retinal illnesses earlier, but can potentially spot other more serious conditions that are not directly related to eye health, but of very great significance.

[Jim Shannon]

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.

[Edward Argar]

The hon. Gentleman is absolutely right. He and I have known each other since we came to this House, and he has read my mind, because I was about to say that there are examples of life-threatening tumours being detected through a regular eye test and a referral onwards, which has saved people’s lives. As he set out, an estimated 25,000 or so people in the UK are affected by inherited retinal diseases. As the hon. Member for Leicester South said, the most common, which I will mispronounce, is retinitis—

[Shockat Adam]

Pigmentosa.

[Edward Argar]

I am grateful to the hon. Gentleman. As a professional optometrist, I am sure his bill will be in the post. Inherited retinal diseases can lead to a gradual loss of vision and can have potentially devastating effects.

[Lee Pitcher (Doncaster East and the Isle of Axholme) (Lab)]

My wife lives with retinitis pigmentosa. We have been together for 30 years, and over that time, I have seen how that degenerative eye disease can change the way that we live, adapt and care for each other as a family. Although there is a massive place, as we have talked about, for innovation and research and for access to investigation for treatment, once she got the white cane that she has now, that became a symbol for everybody else. People notice that she has a condition and they are much more attentive to her for that reason.

It is in the period before that where we could make an intervention around inclusion and education. Does the right hon. Gentleman agree that we could do something at that point to identify to others that somebody has a condition, which they might not be able to see, in order to help them?

[Edward Argar]

The hon. Gentleman is absolutely right. One of the key themes of this debate has been the importance of raising awareness and of societal understanding. Before I was a Minister, I co-chaired the APPG on dementia. I think we are making progress, but a large part of the challenge that we face as a society is raising the awareness and understanding of hidden conditions or things that might not be immediately apparent to people, particularly before there is a diagnosis or some sort of visual sign, such as a white cane, or other measures. This debate will play a small but important role in helping to raise awareness of those conditions.

The next challenge, as was alluded to, is diagnosis and what more can be done to deliver better and earlier diagnosis. Again, real progress is being made, but, as so often in these spaces, we can do more. It is a pleasure to be taking part in this debate, because although we often to and fro across the Dispatch Box or across the Chamber, I suspect that there is a fair degree of consensus today about where we are, what progress we have made and what more needs to be done, which is all to the good.

As has also already been alluded to, when there is a diagnosis, the next challenge is the treatment and what is possible in the way of treatment. In 2019, as has been said, NICE recommended the use of a new gene therapy called—again, I will use the abbreviation rather than the technical term—the Luxturna approach; I am sure that the hon. Member for Leicester South would be able to correct me, if necessary. It was recommended to treat inherited retinal dystrophies that are caused by a specific type of gene mutation. We are seeing real progress with that type of viral vector-based gene therapy. There are also potential new treatments that we have heard about, including further gene and stem cell therapies, artificial vision therapies, electrical stimulation therapies and indeed the use of growth factors and retinal transplants.

I have sat where the Minister is sitting now, so I know that there is always a challenge in this space. One of the great successes of our country is in innovation, including the rapid development of new therapies and new treatments. However, there must always be a process to make sure that they are safe and effective, and we must strike the appropriate balance in recognising that there is no infinite pot of money for any Government.

In August 2024, Retina Today, a respected journal, reported that there are currently over 30 gene therapies in development for the treatment of a range of retinal diseases, so we can look forward with a degree of cautious confidence to what is being done in that space. The challenge will always be, of course, how we translate such treatments into effective, deployable and—if I am being honest—affordable solutions for people who have such conditions. The situation is similar with artificial vision technologies, including the implanting of microchips. Therefore, there is reason for us be hopeful about treatment and research.

I now turn to the UK rare diseases framework, which hon. Members have spoken about today. It was first published in January 2021 and there have been a number of action plans since: there was one in February 2022, with 16 actions; one in February 2023; and one in May 2024. I was encouraged that in December 2024 the Minister’s colleague—the Under-Secretary of State for Health and Social Care, the hon. Member for Gorton and Denton (Andrew Gwynne)—reaffirmed the Government’s commitment to the rare diseases framework. I am also encouraged that there is talk of a 2025 refresh. I hope that the Minister can give a little more information on how she sees that process playing out when she speaks.

Some progress was made with those action plans, but if we are being completely honest, it was perhaps not as much progress as we might have wished. There are a range of external reasons for that, but there is now an opportunity for the new Government to continue to take the process forward. From what I see and hear, they are committed to and willing to do that, which is deeply encouraging.

With regard to NICE, I have already alluded to the challenges that it always faces. It has a difficult role to assess the clinical and cost-effectiveness of medicines and treatment, which is challenging because if someone is in need of a treatment—indeed, if they are desperate for a treatment—they will obviously want that treatment to be trialled. We therefore need to recognise that NICE does a difficult job in striking the right balance.

NICE uses the HST—highly specialised technology—programme. As we heard, refinements to the routing criteria have been proposed, including that

“The disease is ultra-rare and debilitating…having a point prevalence of 1:50,000 or less in England…is lifelong after diagnosis with current treatment, and…has an exceptional negative impact and burden on people with the disease”;

that there is the

“aim to encourage innovation and research”,

which is a good thing that we can all support; that

“The technology should be limited to the population in its licensed indication… No more than 300 people in England are eligible for the technology for its licensed indication, and the technology is not an individualised medicine”;

and that there are “no effective treatment options”.

I understand that just before Christmas NICE launched a public consultation, ahead of updating the HST eligibility criteria. That consultation is due to report later this year, following the closure of the consultation on 30 January. As I look at the date on my watch, I can see that hon. Members and other individuals have about a week or so in which to make any representations or put any views to that consultation, should they wish to do so.

I hope that the Minister will be able to update right hon. and hon. Members on each of those aspects—where she sees us going with diagnosis, treatment and access to treatment, and where she sees that research going in the long term. I hope the hon. Member for Torbay (Steve Darling) will forgive for not mentioning him before, but I pay tribute to him for bringing to his role and to this subject—as he does to his other speeches in this Chamber and the main Chamber, and to other debates since he has arrived in this House, not limited to this subject—a measured, thoughtful and knowledgeable approach. The House is all the better for those contributions.

Once again, I am deeply grateful to the hon. Member for Strangford for bringing forward this hugely important debate. This House is at its best when Members debate not the to-ings and fro-ings that we all put in our election leaflets, but consensual matters where there are genuine points of interest and where we can make a real difference for people. That is one reason why I was very keen, despite being the shadow Secretary of State, to speak in this debate—but also, of course, because it is a pleasure to serve opposite the Minister again for old time’s sake. I very much look forward to what she has to say and I am grateful to have had the opportunity to speak.

15:46

[The Minister for Secondary Care (Karin Smyth)]

It is a pleasure to serve under your chairmanship, Dame Siobhan. I start by thanking the hon. Member for Strangford (Jim Shannon) for securing this debate on such an important issue and other Members for their contributions.

Both the shadow Secretary of State and I are covering for other colleagues this afternoon, so hon. Members can imagine my joy when actual experts walked into the Chamber. The hon. Members for Leicester South (Shockat Adam) and for Torbay (Steve Darling), as has been said, bring great personal and professional expertise to this debate, so it was joyful to see them come in. It was good to hear from my hon. Friend the Member for Doncaster East and the Isle of Axholme (Lee Pitcher); the experience he brings through his wife is really valuable. My hon. Friend the Member for Battersea (Marsha De Cordova) has been such a champion of this issue both in her personal experience and since she came to the House. I understand that it is her birthday today, so I hope she is having a good time. She has brought great expertise to this place.

I am going to do my best to answer the questions. I have been billed highly by the hon. Member for Strangford, and I am grateful for that. The Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Gorton and Denton (Andrew Gwynne), will write to hon. Members about anything that is outstanding.

I would like to take time to acknowledge the experiences of those living with rare inherited retinal diseases and their families, who I know will be paying attention to this debate. I pay tribute to all those who work tirelessly to raise awareness of rare conditions and bring about change. Although rare diseases are rare individually, their impacts are far-reaching. One in 17 people will be affected by a rare condition over their lifetime; that is around 3.5 million people in the United Kingdom. As the hon. Member for Strangford said, rare inherited retinal diseases affect around 25,000 people in the UK and collectively represent a leading cause of sight loss in working-age adults. We recognise the impact that these conditions have on patients, families and wider society and the need for innovative approaches to tackle these changes.

The Government are committed to improving the lives of people with rare conditions. The hon. Member for Torbay used that quote about providing opportunity, support and determination for people. The UK rare diseases framework outlines four priorities to achieve this aim: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better co-ordination of care; and improving access to specialist care treatment and drugs. In England, our annual rare diseases action plan sets out the steps we are taking to meet those priorities. We continue to make progress and are working to finalise our next England action plan for publication this year.

It is vital that NHS patients with rare diseases are able to access innovative new treatments as they become available. That includes those with progressive retinal diseases, where early intervention is crucial to preserve sight. Under England’s action plans, NICE, the Medicines and Healthcare products Regulatory Agency and NHS England are working to understand and address the barriers to access for rare diseases treatment. The hon. Member for Strangford asked a number of questions about NICE’s approach that I hope I will cover. NICE does a difficult job well, in my view, and we think its approach is appropriate for the evaluation of treatments for rare diseases. NICE recommended 84% of medicines for rare diseases evaluated through its standard technology appraisal programme in 2023-24. That is comparable to its approval rate for medicines for more common conditions. Those treatments are now available for the treatment of NHS patients.

NICE also operates a separate, highly specialised technology programme for the evaluation of a handful of medicines for very rare diseases each year that recognises the challenges of bringing treatments for very rare diseases to market. NICE recommended the gene therapy Luxturna for a type of inherited retinal dystrophy through that route. One of the recipients of that groundbreaking therapy on the NHS has spoken of his gratitude for the positive effects of the treatment on not just his vision, but his confidence and independence.

NICE is also in the process of reviewing the criteria for routing topics to its highly specialised technologies programme, which the hon. Member for Strangford asked about. That review will ensure that future routing decisions are more transparent, consistent, efficient and predictable. As part of that process, NICE has launched a public consultation on its progress. I encourage the rare diseases community and hon. Members interested to continue to engage with that process.

Research offers a way to accelerate access to new and innovative treatments. Through the National Institute for Health and Care Research, the Government support rare diseases research. There are currently eight active research projects on rare retinal disease funded by the NIHR, with a combined value of over £6 million. The NIHR also invests in infrastructure to support and deliver research studies. The NIHR Moorfields Biomedical Research Centre, which is dedicated solely to vision research, has made significant strides in the field of rare retinal diseases. By harnessing genomic data, the BRC has developed effective treatments, including gene-replacement therapies for inherited retinal disorders. The NIHR is also working closely with commercial companies to bring new medicines and technology to patients.

To connect people living with rare diseases to innovative treatments and sources of support, we need to diagnose these conditions as early as possible. The UK is a world leader in genomic diagnosis. Patients in England have access to whole genome sequencing on the NHS. Advances in genomics mean that new causes of rare retinal diseases are being found every year. As part of Genomics England’s generation study, we are harnessing the power of genomic sequencing to screen for over 200 rare genetic conditions that can be treated in the NHS in early childhood to improve outcomes for babies and their families. That includes the rare retinal disease RPE65-associated Leber congenital amaurosis, which can be treated with Luxturna.

A central mission of this Government is to build a health and care system fit for the future. The 10-year health plan will ensure a better health service for everyone, regardless of condition or service area. The plan will focus on our three shifts for a modern NHS: moving from hospital to community, analogue to digital and sickness to prevention. All three offer opportunities to improve time to diagnosis and care for people living with rare retinal conditions. The shift from analogue to digital will enable innovative uses of data to improve diagnosis and measure treatment outcomes, while NHS ocular genetics services’ use of video consultations continues to widen patient access to specialist advice, in keeping with the shift from hospital to community. Although many rare diseases are not preventable, early diagnosis, as we have heard, can lead to timely interventions that improve health outcomes.

I will outline the treatment pathway for rare retinal diseases. I am thankful for the role played by high street optometrists, some of them here today, in helping to identify patients with sight-threatening conditions. There is good availability of NHS sight-testing services, with over 12 million free NHS sight tests provided to eligible groups annually, including children, individuals aged 60 and over, and those on income-related benefits. Optometrists are required to refer any patient showing signs of injury, disease or abnormality and integrated care boards have been asked to ensure that there are direct referral pathways in place between community optometry and secondary care. As the hon. Member for Leicester South said, the eyes are the gateway into other health conditions. Optometry has a very important role.

As one of the busiest outpatient specialties with one of the largest waiting lists, we know that ophthalmology is facing huge challenges and we are working hard on how we can help to build capacity. NHS England is looking at how digital connectivity could improve the triage of patients referred between primary and secondary care. That would allow for images to be shared, and specialist advice and guidance could help to keep patients in the community where possible.

We recognise the importance of access to emotional and practical support, especially where treatment may not be available. A diagnosis of sight loss will have a profound impact on any individual, who will be at increased risk of stress, anxiety and depression. NHS England’s patient support toolkit for eye care commissioners and providers aims to ensure that patients with ophthalmic conditions or sight loss are supported throughout their care journeys. The RNIB patient support pathway aims to strengthen that and ensure that support and guidance are available to patients from their first eye care appointment through to having a confirmed diagnosis, and then right the way through to living well with their condition. I know that the work of the all-party parliamentary group on eye health and visual impairment and of other hon. Members will help in giving those people a powerful voice.

As we work towards building a health care service fit for the future, it is vital that people living with rare diseases are not left behind. With the UK rare diseases framework coming to an end in 2026, we will look to build on the progress made over the past five years, which the shadow Secretary of State mentioned. We will work with colleagues in the devolved Administrations, as highlighted by the hon. Member for Strangford.

We have commissioned an evaluation of England’s rare diseases action plans through NIHR and will also be undertaking engagement this year to inform future policy decisions. The Government are deeply committed to working across the health and social care system and with the rare diseases community to improve the lives of those with rare conditions.

Once again, I thank the hon. Member for Strangford for raising this important matter. It is good to have high interest, expertise and experience in this place. We want to work with colleagues here and we thank the rare disease community for their valuable ongoing engagement with us to bring about meaningful change.

[Dame Siobhain McDonagh (in the Chair)]

Order. I will now put—[Interruption.]

[Jim Shannon]

rose—

[Dame Siobhain McDonagh (in the Chair)]

Oh, I am sorry; I nearly denied the hon. Member for Strangford his right to sum up. I apologise. I would never wish to silence him.

15:56

[Jim Shannon]

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.

[Dame Siobhain McDonagh (in the Chair)]

I apologise again to the hon. Member for Strangford.

Question put and agreed to.

Resolved, 

That this House has considered innovation in the field of rare retinal disease.

16:00

Sitting adjourned.