Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 2 December 2025 to Question 93697, whether he has made an estimate of the differences in the number of conditions screened for in newborns between the UK and other countries such as Norway, Australia, Italy, Poland, and the Netherlands; and how those differences relate to the internationally recognised criteria used by the UK National Screening Committee.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Screening programmes in the United Kingdom have a more rigorous approach towards evaluating the benefits and harms of screening compared to many other countries such as the United States of America and Italy.
The independent UK National Screening Committee (UK NSC), which is made up of leading medical and screening experts, advises Ministers in all four nations of the UK on the evidence on screening. Where the Committee is confident that screening provides more good than harm, they recommend a screening programme.
Some countries often cited as screening more conditions than the UK are not always running national programmes. Some countries or regions screen for a condition when it is only at the pilot or research stage. Some ‘screening programmes’ just test for a condition rather than being end-to-end quality-assured programmes that include diagnosis, treatment and care. And screening in some countries is delivered regionally, or even just by individual hospitals, rather than nationally. They are therefore not directly comparable to the national screening programmes offered in the UK.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 2 December 2025 to Question 93697, if he will meet with representatives of ArchAngel MLD Trust, the MPS Society, MLD Support UK, the LSD Collaborative, and Alex – The Leukodystrophy Charity before responding to the UK National Screening Committee’s forthcoming recommendation on Metachromatic Leukodystrophy.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
My rt. Hon. Friend, the Secretary of State for Health and Social Care, will carefully consider a UK National Screening Committee (UK NSC) recommendation on metachromatic leukodystrophy when it is presented to him, before making a decision. The Secretary of State will ask officials to meet with representatives of ArchAngel MLD Trust, the MPS Society, MLD Support UK, the LSD Collaborative, and Alex – The Leukodystrophy Charity.
Asked by: Gregory Stafford (Conservative - Farnham and Bordon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what plans her Department has to improve training and clinical awareness of Ehlers–Danlos syndrome among GPs and primary care clinicians to support earlier recognition and referral.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department recognises that Ehlers-Danlos syndromes (EDS) are complex, multi-systemic conditions that can be challenging to diagnose. While no formal assessment of average diagnosis times has been made, the Department is aware that many patients experience significant delays for a confirmed diagnosis. These delays are primarily due to low awareness among clinicians, the absence of a single diagnostic test for hypermobile EDS, and the need for multidisciplinary input.
For rarer genetically confirmed types of EDS, NHS England commissions a national diagnostic service. In addition to investigating and diagnosing complex and rare EDS types, the national diagnostic service supports general practitioners (GPs) and specialists in secondary and tertiary care by issuing detailed reports with management recommendations, developing guidelines and pathways of care, and offering clinician-to-clinician advice. It helps GPs by clarifying referral pathways and guiding ongoing care, while supporting hospital specialists through access to genetic testing, multidisciplinary input, and best practice guidance. This collaboration ensures accurate diagnosis, reduces unnecessary investigations, and promotes coordinated care across all levels of the health system, helping to avoid inappropriate referrals and ensuring that patients are able to access the correct specialist care efficiently.
We also recognise that GPs can find it challenging to diagnose EDS because these conditions share symptoms with many other disorders. The EDS GP Toolkit, developed by the Royal College of General Practitioners in partnership with Ehlers-Danlos Support UK, helps GPs in managing EDS by improving recognition, diagnosis, and management of these multi-system disorders. The toolkit aims to reduce delays in diagnosis and helps to prevent long-term disability through appropriate early management.
The Department is engaging with patient organisations to identify further opportunities to streamline referral processes and ensure equitable access to assessment and care.
Asked by: Gregory Stafford (Conservative - Farnham and Bordon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to reduce the time taken for (a) referrals and (b) assessments for Ehlers-Danlos syndrome.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department recognises that Ehlers-Danlos syndromes (EDS) are complex, multi-systemic conditions that can be challenging to diagnose. While no formal assessment of average diagnosis times has been made, the Department is aware that many patients experience significant delays for a confirmed diagnosis. These delays are primarily due to low awareness among clinicians, the absence of a single diagnostic test for hypermobile EDS, and the need for multidisciplinary input.
For rarer genetically confirmed types of EDS, NHS England commissions a national diagnostic service. In addition to investigating and diagnosing complex and rare EDS types, the national diagnostic service supports general practitioners (GPs) and specialists in secondary and tertiary care by issuing detailed reports with management recommendations, developing guidelines and pathways of care, and offering clinician-to-clinician advice. It helps GPs by clarifying referral pathways and guiding ongoing care, while supporting hospital specialists through access to genetic testing, multidisciplinary input, and best practice guidance. This collaboration ensures accurate diagnosis, reduces unnecessary investigations, and promotes coordinated care across all levels of the health system, helping to avoid inappropriate referrals and ensuring that patients are able to access the correct specialist care efficiently.
We also recognise that GPs can find it challenging to diagnose EDS because these conditions share symptoms with many other disorders. The EDS GP Toolkit, developed by the Royal College of General Practitioners in partnership with Ehlers-Danlos Support UK, helps GPs in managing EDS by improving recognition, diagnosis, and management of these multi-system disorders. The toolkit aims to reduce delays in diagnosis and helps to prevent long-term disability through appropriate early management.
The Department is engaging with patient organisations to identify further opportunities to streamline referral processes and ensure equitable access to assessment and care.
Asked by: Gregory Stafford (Conservative - Farnham and Bordon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent assessment she has made of the adequacy of NHS waiting times for the diagnosis of Ehlers–Danlos syndrome.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department recognises that Ehlers-Danlos syndromes (EDS) are complex, multi-systemic conditions that can be challenging to diagnose. While no formal assessment of average diagnosis times has been made, the Department is aware that many patients experience significant delays for a confirmed diagnosis. These delays are primarily due to low awareness among clinicians, the absence of a single diagnostic test for hypermobile EDS, and the need for multidisciplinary input.
For rarer genetically confirmed types of EDS, NHS England commissions a national diagnostic service. In addition to investigating and diagnosing complex and rare EDS types, the national diagnostic service supports general practitioners (GPs) and specialists in secondary and tertiary care by issuing detailed reports with management recommendations, developing guidelines and pathways of care, and offering clinician-to-clinician advice. It helps GPs by clarifying referral pathways and guiding ongoing care, while supporting hospital specialists through access to genetic testing, multidisciplinary input, and best practice guidance. This collaboration ensures accurate diagnosis, reduces unnecessary investigations, and promotes coordinated care across all levels of the health system, helping to avoid inappropriate referrals and ensuring that patients are able to access the correct specialist care efficiently.
We also recognise that GPs can find it challenging to diagnose EDS because these conditions share symptoms with many other disorders. The EDS GP Toolkit, developed by the Royal College of General Practitioners in partnership with Ehlers-Danlos Support UK, helps GPs in managing EDS by improving recognition, diagnosis, and management of these multi-system disorders. The toolkit aims to reduce delays in diagnosis and helps to prevent long-term disability through appropriate early management.
The Department is engaging with patient organisations to identify further opportunities to streamline referral processes and ensure equitable access to assessment and care.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential impact of NHS policies on private access for patients with Postural Orthostatic Tachycardia Syndrome seeking faster access to specialist care.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Postural orthostatic tachycardia syndrome (PoTS) is diagnosed by a combination of general practitioners (GPs) and specialist clinicians. GPs can diagnose PoTS in many cases but, if they are unsure of symptoms or if symptoms are complex, they will refer patients to specialists for diagnosis, or where patients do not respond to initial treatment, patients may be referred to specialised cardiology or neurology services. The Royal College of General Practitioners’ Syncope Toolkit provides information to GPs, including the use of the active stand test, to rule out other conditions and potentially diagnose PoTS more quickly. Management of PoTS typically involves lifestyle changes and medications to help control symptoms, and can involve support from a multidisciplinary team.
Where patients are referred to secondary care for diagnosis, we are investing in additional capacity to deliver appointments to help bring waiting lists and times down. The Elective Reform Plan, published in January 2025, sets out the specific productivity and reform efforts needed to return to the constitutional standard, that 92% of patients to wait no longer than 18 weeks from referral to treatment, by March 2029.
By expanding community-based services for routine monitoring and follow up, employing artificial intelligence for productivity, and investing in digital tools and data, as outlined in the 10-Year Health Plan, we can ensure that consultants’ time is reserved for complex cases of PoTS, including specialist diagnostic assessments.
Integrated care boards (ICBs), with oversight from NHS England, have a statutory responsibility to commission services which meet the needs of their local populations, including for those with PoTS. It is the responsibility of ICBs to work with clinicians, service users, and patient groups to develop services and care pathways that meet the needs of patients with PoTS. While the Department recognises the significant challenges of PoTS diagnoses, responsibility for specific clinical pathways and specialist training rests with local National Health Service bodies.
The Department has made no assessment of the impact of NHS policies on private access for patients with PoTS seeking faster access to specialist care.
Asked by: Helen Morgan (Liberal Democrat - North Shropshire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the impact of not extending Start for Life funding to new Best Start for Life Family Hub areas on the delivery of integrated early-years services by local authorities.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Delivering integrated, joined-up health, education, and family support is at the heart of our ambition to raise the healthiest generation of children ever.
Healthy Babies, formerly Start for Life, funding is helping families during the critical 1,001 days, and parents have said that they are more confident in feeding their babies and have better perinatal mental health because of this support. Further information is available at the following link:
We continue to assess how we can best support early years service integration across the country and remain committed to working with delivery partners locally to achieve this.
Healthy Babies is one element of our broader commitment to supporting babies, children, and families. From April 2026, Best Start Family Hubs will expand to every single local authority, backed by over £500 million, to reach up to half a million more children and families. This funding will help all local authorities to integrate a range of statutory and non-statutory child health and family services.
Best Start Family Hubs will form part of the architecture of the Neighbourhood Health Service. Through the shifts from hospital to community and from treatment to prevention, we will further strengthen the integration of services, helping to ensure that babies and their families can get the support they need, when and where they need it.
Asked by: Luke Evans (Conservative - Hinckley and Bosworth)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to WPQ 94952 answered on 10 December 2025 about Crohn's Disease and Ulcerative Colitis, when in 2026 will Diagnosis Connect be rolled out across England to provide tailored information and support to newly diagnosed Chohn's Disease and Ulcerative Colitis patients.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Initially, the Diagnosis Connect Service will be piloted across a small number of long-term conditions which will be determined based on conditions diagnosed and referred from primary care, and readiness of the charities to proceed, as well as considerations around which diagnostic pathways might most benefit from this approach.
The aim will be to focus more support going to those with greatest need and areas with the worst health outcomes, therefore impacting on inequalities.
An open procurement process will enable us to secure a partnership with three or more specialist charities which have the infrastructure, capabilities, and networks to deliver a successful pilot for patients and the National Health Service, ahead of a full rollout across the wider health system.
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department plans to involve cancer charities in the delivery and governance of the forthcoming National Cancer Plan.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Cancer Plan will build on the shift from hospital to community set out by the 10-Year Health Plan and will seek to foster improved collaboration with the voluntary and community sector to deliver this.
Governance mechanisms for monitoring implementation and ensuring accountability for delivery will be established as part of the development of the National Cancer Plan, which will be published in the new year.
Asked by: Baroness Falkner of Margravine (Crossbench - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government whether, within the last ten years, they have sought to require (1) the Tavistock Clinic, or (2) related NHS institutions which have treated gender dysphoric related conditions, to provide data linkage information; and whether they intend to do so in the future.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The Data Linkage Study is a retrospective study based on an analysis of data collected historically for a cohort of adults who, as children, were cared for under a former model of National Health Service gender care, the Gender Identity Development Service (GIDS). This study requires no active patient participation and instead relies on an analysis of the available digital information held within health records and other nationally held databases. The analysis looks for potential linkages or associations that do not prove ‘cause and effect’ but nonetheless may provide useful insights on the experience and outcomes of former GIDS patients.
The study was planned to take place during the lifespan of the Independent Cass Review and a statutory instrument was brought forward in 2022 aiming to protect those disclosing protected information. It is well documented that some NHS adult Gender Dysphoria Clinics did not send data to allow the study to commence and the study was not completed.
NHS England is now responsible for delivery of the Data Linkage Study. NHS England has taken time to undertake due diligence work on the data sources critical to the study, and to work with organisations to refine the planned approach to data sharing. Study approvals are currently in progress. As with usual research practice, the data linkage study protocol will be made available in the public domain once independent research and ethical approvals have been appropriately secured, at which point the analytical work can begin.