Stephen Kinnock MP: speeches

Speeches

• 9 Jul 2025 · Glaucoma Awareness · Hansard source

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  Thank you, Mr Pritchard. It is a pleasure to serve under your chairship. I thank the hon. Member for Leicester South (Shockat Adam) for securing this important debate to raise awareness of glaucoma. I enjoyed our meeting some time ago, when we discussed this and other related issues at length. I am keen to ensure that we keep that dialogue going, and not just in this Chamber. This is a timely debate as it follows Glaucoma Awareness Week, which ran from 30 June to 6 July. Losing one’s eyesight can be devastating, and I pay tribute to the charities that do so much to help people live with glaucoma or to research a cure, such as Glaucoma UK, the Glaucoma Foundation and the Royal National Institute of Blind People, to name just a few. Last week, the Prime Minister set out our plan to get the NHS back on its feet and fit for the future. Underpinning our plan are three big shifts: from hospital to community, from analogue to digital and from sickness to prevention. The plan was developed through extensive engagement with the public, patients and staff, including the eye care sector. All three shifts are relevant to preventing and managing conditions such as glaucoma in all parts of the country. More tests and scans delivered in the community, and better joint working between services, will support the management of conditions, including glaucoma, closer to home. I turn to glaucoma detection. This Government take glaucoma very seriously, as it is one of the main causes of sight loss. It is a time-sensitive condition, and early detection and treatment can help to slow down or prevent vision loss. I acknowledge the vital role played by community optometry in protecting people’s eye health across the country. That includes the hon. Member for Leicester South, who of course is an optometrist and has significant expertise in this sector. I also pay tribute to all the hon. Members who have contributed to this debate with such passion and conviction. Sight tests play a vital role in the early detection of glaucoma. Most glaucoma patients are identified through routine sight tests. It is not possible to “feel” glaucoma; it does not cause any symptoms and the eye pressure does not always cause pain. That is why regular sight tests are so essential, so that conditions such as glaucoma can be diagnosed and treated as early as possible. It is recommended that everyone should have a sight test every two years, and more often if it is considered clinically necessary. The NHS invests over £600 million annually in the provision of sight tests and optical vouchers, and high street opticians deliver more than 13 million NHS sight tests annually, which are free of charge for eligible patients. NHS sight tests are widely available across the country for millions of people and those who are entitled to receive them include children, individuals over the age of 60, individuals on income-related benefits and individuals diagnosed with glaucoma or considered to be at risk of glaucoma. We understand that some people might not prioritise sight tests, compared with other healthcare, or they might not know that sight tests are recommended every two years. That is why we always look for opportunities to remind the public through social media. I was pleased that the Department supported Glaucoma Awareness Week and highlighted the importance of regular sight tests through our social media platform last week. I will also take this opportunity to urge anyone who might be watching or reading this debate, “Visit your optician if you have not had a sight test in the last two years. Please check on the NHS website to see whether you are eligible for any help in paying for a test.” NHS sight test providers in the high street also display information about NHS sight test eligibility. Some high street optical practices are also being commissioned by integrated care boards to provide glaucoma referral refinement services. Moving more care into the community is one of the key priorities in our 10-year plan; we want to see care happening as locally as possible for patients. Where a patient has been identified as having raised eye pressure, local glaucoma referral refinement schemes provide additional tests to confirm whether a referral into secondary care is absolutely necessary. These schemes can save patients time and worry, and reduce unnecessary referrals, while freeing up space for others who need specialist attention in hospital. More than 70% of ICBs currently have some coverage of referral refinement in place. For those patients who do need to be seen in secondary care, it is vital that they have access to timely diagnosis and any clinically necessary treatment. We have wasted no time in getting to work on cutting NHS waiting lists and ensuring that people have the best possible experience during their care. We promised change and we have delivered early, with a reduction in the list of over 230,000 pathways, including ophthalmology. The waiting list has been reduced by over 24,000 patients since July 2024; it has fallen from 606,819 to 582,385 as of February 2025. In addition, we have exceeded our pledge to deliver an additional 2 million operations, scans and appointments, having now delivered over 4 million additional appointments.

• 8 Jul 2025 · Down’s Syndrome Regression Disorder · Hansard source

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  As the Government have made clear throughout the debate on reforming the welfare system, those who need to be supported and protected will be supported and protected, so I can reassure the hon. Gentleman on that point. There is clearly a lot of work to do through the review that will be led by the Minister for Social Security and Disability, my right hon. Friend the Member for East Ham (Sir Stephen Timms). This will be an important part of his work. Through the implementation of the Down Syndrome Act 2022, we will improve awareness and understanding of the needs of people with Down’s syndrome and how to meet them. The Act requires the Secretary of State for Health and Social Care to give guidance to relevant authorities, including local authorities, education and housing services, on the appropriate steps they should be taking to meet the needs of people with Down’s syndrome in exercising their relevant functions. Work to develop the statutory guidance under the Act is being taken forward as a priority, with a view to issuing it for consultation in the autumn. The shadow Minister, the right hon. Member for Melton and Syston (Edward Argar), asked about that. We looked at publishing it over the summer, but we received feedback from stakeholder groups that parents in particular are often busy with their kids over the summer, so it is better to wait until the autumn. That is what we are doing, and we will be publishing it as soon as the school holidays are over. Officials have considered a range of evidence and engaged extensively with sector partners to inform the development of the guidance. This includes a national call for evidence, which received more than 1,500 responses. A summary report of its findings will be published ahead of, or alongside, issuing the draft guidance for consultation. Based on what we were told during the call for evidence and our subsequent engagement with sector partners and experts, a needs profile has been developed setting out the different needs of people with Down’s syndrome, including people with Down’s syndrome regression disorder. We intend to publish the needs profile paper alongside the draft guidance this autumn to ensure full transparency. The guidance itself will raise awareness of the specific needs of people with Down’s syndrome, including health needs such as unexplained regression. The guidance will also set out practical steps that relevant authorities should take to meet the needs of people with Down’s syndrome. We have made significant progress in developing the guidance. We are working closely with relevant Government Departments and sector partners to ensure that it is helpful, accurate and fully reflective of the latest developments in Government policy. Crucially, that engagement has involved people with lived experience of Down’s syndrome, as well as organisations that support people with Down’s syndrome, other conditions and/or a learning disability. On 4 June, I met the all-party parliamentary group on Down syndrome and provided an update on the latest progress on the guidance. We discussed how we can ensure that the guidance is as effective and impactful as possible. The latest version of the draft guidance, which has had input from all relevant Government Departments, was also shared with sector partners in June for their feedback. Officials are reviewing that feedback ahead of issuing the guidance for consultation this autumn, which will provide a further opportunity for individuals and organisations to share their views. We remain committed to delivering high-quality guidance that supports improved outcomes for people with Down’s syndrome, while bringing wider benefit where possible. To support implementation of the guidance, NHS England published statutory guidance on 9 May 2023 requiring that every integrated care board must have a named leader for Down’s syndrome. The 10-year health plan will ensure a better health service for everyone, regardless of condition or service area. We want disabled people’s access to and experience of healthcare services to be equitable, effective and responsive to their needs. Significant engagement took place as part of the 10-year health plan’s development, and informed the final plan. That engagement included a roundtable on learning disability, at which we heard directly from people with Down’s syndrome about their experience of the NHS. We also received contributions from organisations that support and advocate for Down’s syndrome across the health and social care sector. The 10-year health plan sets the vision for what good, joined-up care looks like for people with a combination of health and care needs, including people with Down’s syndrome regression disorder or other disabilities. The neighbourhood health service will support disabled people to be more active in the delivery and management of their own care. That includes increasing uptake of personal health budgets, which provide individuals with greater choice and flexibility on how their assessed wellbeing needs are met. We know that there are many disabled people, including people with Down’s syndrome, who want to work. The 10-year plan will break down barriers to opportunity by delivering the holistic support that people need to access and thrive in employment. A number of hon. Members raised questions about training. The guidance will raise awareness of the specific needs of people with Down’s syndrome, including people with regression disorder. We understand that training is an important part of that picture. Under the Health and Social Care Act 2008 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, providers registered with the Care Quality Commission must ensure that staff receive appropriate professional development necessary for them to carry out their duties. Specific training on learning disability and autism, appropriate to the staff member’s role, is also mandated under the Health and Care Act 2022. We expect that providers should consider whether specific training on Down’s syndrome is required for their staff. Members also raised questions about funding research into regression disorder. The Department funds health and social care research through the NIHR. The NIHR welcomes funding applications for research into any aspect of human health and care, including Down’s syndrome regression disorder. Such applications are subject to peer review and are judged in open competition, with awards made on the basis of the importance of the topic to patients and to health and care services, value for money, and scientific quality. That enables maximum flexibility, both in the amount of research funding that can be awarded to a particular area, and in the type of research that can be funded. The NIHR works closely with other Government funders—including UK Research and Innovation, which is funded by the Department for Science, Innovation and Technology and includes the Medical Research Council—to fund research to improve care and prevent poor health outcomes for people with Down’s syndrome. The shadow Minister asked a couple of specific questions. I think he mentioned Down’s Syndrome Association-supported research by Cambridge University, and the trials in the United States of America. If it is okay, I will write to him on those points. I am not in a position to address them today. I hope I have addressed the points raised by hon. Members in this debate. I end by thanking all those who have committed so much time and effort to supporting the development of the guidance under the Down Syndrome Act. We are grateful for the invaluable input that individuals and organisations continue to provide on the draft guidance. Their feedback has been, and is, instrumental in helping us to ensure that the final guidance has maximum benefit. Officials will continue to work with sector partners to ensure that the communities they represent are aware of the forthcoming consultation and can share their views. I once again thank my hon. Friend the Member for Thurrock for securing this important debate, and for all the incredibly important work that she is doing in this area. I also thank all hon. Members for their contributions.

• 8 Jul 2025 · Down’s Syndrome Regression Disorder · Hansard source

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  It is a pleasure to serve under your chairship, Sir Jeremy. I thank and pay tribute to my hon. Friend the Member for Thurrock (Jen Craft) for securing this important debate. I commend her for the work she is doing to raise such an important issue, and for sharing her personal experiences in a moving and powerful way, as a parent of a child with Down’s syndrome. I also pay tribute to all the hon. Members who have spoken so powerfully and movingly in this debate. Last week, we launched our 10-year health plan for the NHS, which creates a new model of care, fit for the future. The neighbourhood health service will help to improve life outcomes for disabled people, including people with Down’s syndrome, by providing access to holistic, ongoing support that is closer to home. Through local commissioning, we will ensure that neighbourhood health services work in partnership with family hubs, schools, nurseries and colleges to offer timely support to children, young people and their families, including those with special educational needs and disabilities. We have heard powerful testimonies about the challenges associated with Down’s syndrome regression disorder, both for people with Down’s syndrome and for their families and carers. As we have heard, regression describes the loss of previously acquired cognitive and developmental skills in an individual. Down’s syndrome regression disorder is a specific, rare type of regression, which usually presents in adolescence or early adulthood. People with Down’s syndrome can live full lives pursuing their personal interests, taking up employment, and living independently. However, regression can have a devastating impact for people with Down’s syndrome; the loss of developmental skills can affect daily living, language, motor abilities or social interaction. We know that symptoms can often be overlooked, or misdiagnosed as dementia. We have heard that further awareness and understanding of the disorder is needed. Like with other support for people with Down’s syndrome, it is important that care for regression disorder is personalised and takes into account the specific needs of the individual. As my hon. Friend the Member for Thurrock so clearly explained, there is currently limited understanding of Down’s syndrome regression disorder. We know that experts in the field have looked into regression and developed a position statement on regression in adolescence and early adulthood experienced by people who have Down’s syndrome. This includes recommended healthcare actions for people with Down’s syndrome who show signs of loss of skills or cognitive decline. There has been some academic research into regression, but there is still much to learn about this disorder and why it happens to some people. We understand that many factors may come into play in causing regression, but the specific underlying cause of Down’s syndrome regression disorder is still unclear. Through its research delivery arm, the National Institute for Health and Care Research, the Department of Health and Social Care welcomes high-quality funding applications from researchers seeking to better understand this condition, and to inform enhanced management and care. More broadly, patients will receive the most cutting-edge treatment years earlier than planned under the Government’s 10-year health plan, which will speed up clinical trials so that the UK becomes a hotbed of innovation. Millions of people will now be able to search for and sign up to life-changing clinical trials via the NIHR Be Part of Research service on the NHS app, allowing patients to browse and find the trials best suited to their interests and needs. The Government are committed to improving life outcomes for people with Down’s syndrome, including those who have regression disorder. In order to achieve this, it is vital that we raise awareness of the needs of people with Down’s syndrome. We know that despite many positive developments, such as increased life expectancy, people with Down’s syndrome do not always receive the care and support they need to lead the lives they want to lead in their communities.