Further to the answer provided on 20 July in response to Question 18432, the clinical guideline remains in development through the PANS PANDAS Steering Group, under the leadership of the Royal College of Paediatrics and Child Health. The Steering Group brings together clinicians, professional organisations, families, and patient representatives, and as well as developing the clinical guideline, its work includes supporting education, research, and improved awareness of these conditions.

Once finalised, the National Institute for Health and Care Excellence anticipates reviewing the guideline and, if it considers it to be of sufficient quality, will signpost to it on its website with commentary on its strengths and limitations. The guideline will also help inform any future awareness and education activity, including the training curricula produced jointly by regulators, royal colleges, and professional bodies.

Clinical decisions, including prescribing decisions, will remain for the treating clinician, informed by professional judgement, the available evidence, and relevant guidance. Each clinician is responsible for keeping that knowledge up to date. Integrated care boards, primary care providers, and National Health Service trusts are also expected to keep abreast of emerging evidence and guidance and consider it through their clinical governance arrangements.

There is currently no routine national data collection on the number of children and young people affected by paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS).

The Steering Group’s Research Group is progressing work to improve understanding of the number of children and young people affected. Applications have been made to the independent British Paediatric Surveillance Unit and Child and Adolescent Psychiatry Surveillance System.

Information on research funded through the National Institute for Health and Care Research (NIHR) relating to PANS and PANDAS is available through the NIHR Funding and Awards website. The NIHR welcomes applications for research into all aspects of human health, including PANS and PANDAS. The NIHR Funding and Awards website is available at the following link:

https://fundingawards.nihr.ac.uk/

Departmental officials have regular discussions with their counterparts in the devolved governments about general practice (GP) workforce issues, including recruitment and retention of GPs.

Officials in the Department have been engaging with officials in the devolved administrations on the proposals for a Single Patient Record, and its potential to support appropriate cross-border referrals, and appropriate information sharing to inform good decision-making, support healthcare, and minimise risk to patients.

The Government is committed to ensuring that all patients across the UK have access to cutting-edge clinical trials and innovative, lifesaving treatments, and we are working with the devolved administrations, delivery partners across the health system, and key stakeholders from across the clinical research sector – all under the umbrella of the UK Clinical Research Delivery Programme (UKCRD) – to increase commercial research participation, and make the UK a world leader in clinical trials.

To increase participation by patients across all four nations, we are establishing 21 new Commercial Research Delivery Centres (CRDCs) across the UK, alongside a UK-wide CRDC Network, which will coordinate activity, provide strategic leadership, and support consistency across the centres. The CRDC Network complements established UK-wide infrastructure, including the Experimental Cancer Medicine Centres Network and the UK Clinical Research Facility Network, which support research delivery, strengthen capability, and enable patients across England, Scotland, Wales, and Northern Ireland to access innovative clinical trials.

The Hon Member may also be aware that the National Institute for Health and Care Research provides a UK-wide online service called Be Part of Research, which promotes participation in health and social care research by allowing users to search for relevant studies and register their interest. This makes it easier for people across the UK to find and take part in commercial clinical trials and other health and care research.

In addition to the activity set out above, the Government is taking specific action through the UK Rare Diseases Framework to improve the lives of people living with rare diseases, and last year extended the framework to continue until 2027. The framework sets out four shared priorities for addressing rare diseases across England, Scotland, Wales and Northern Ireland: improving speed of diagnosis; raising awareness of rare conditions with healthcare professionals; coordinating care; and providing access to specialist care and treatments.

Genomic testing and analysis of genomic data is at the heart of the UK Rare Diseases Framework, and the agencies contributing to that activity are taking constant steps to increase interoperability between rare disease registries, genomic data systems, and clinical records held across the four nations, to assist in research, testing and analysis.

The Government has intentionally defined “environmental factors” broadly under section 45 of the English Devolution and Community Empowerment Act 2026.

Rather than setting out an exhaustive list, the act provides flexibility for strategic authorities, combined authorities, combined county authorities, and mayors to consider the full range of environmental factors that may be relevant when exercising their functions.

This can include matters such as water pollution, flooding, and heatwaves, where these are relevant to their functions and responsibilities.

The Government continues to engage regularly with the devolved administrations on shared health priorities.

However, health, including thrombectomy services, is a devolved matter and responsibility for the organisation and delivery of health services rests with the devolved administrations in Scotland, Wales, and Northern Ireland.

The Government works closely with the devolved governments to support effective cross-border healthcare arrangements and ensure patients can access timely, high-quality care regardless of where they live.

We work jointly with partners to improve the practical operation of cross-border services. This includes efforts to strengthen data sharing and digital interoperability, support access to specialist services and unnecessary burdens on patients and providers.

There are established cross-border networks which bring together relevant organisations to address operational challenges and improve coordination of care.

The Falls and Fragility Fracture Audit Programme, which includes a dedicated Fracture Liaison Service database, is a clinical audit of fracture prevention care, delivered by the Royal College of Physicians.

The Fracture Liaison Service database collects, measures, and reports on the care provided by Fracture Liaison Services in England, Wales, and Northern Ireland. It captures data that NHS datasets are not designed to record, providing key insight across these nations.

Fracture Liaison Services in England, Wales, and Northern Ireland report into the database. The Royal College of Physicians publishes an annual report on Fracture Liaison Services in England and Wales.

My Rt Hon. Friend, the Secretary of State for Health and Social Care, recently announced plans for NHS England to appoint new National Health Service integrated care board chairs in Greater Manchester and South Yorkshire, who will also serve as the Mayor’s Health Commissioner.

The English Devolution and Community Empowerment Bill allows a commissioner to be delegated some functions of the combined authority, if considered necessary.

Reporting jointly to the health service and democratically elected local mayors, these new leaders will be expected to mobilise partners locally to improve health outcomes for the local population, including by supporting delivery of the three key shifts we have set out in the 10-Year Plan: from hospital to community; from sickness to prevention; and from analogue to digital. No additional NHS performance indicators have been set centrally.

My Rt Hon. Friend, the Secretary of State for Health and Social Care, recently announced plans for NHS England to appoint new National Health Service integrated care board chairs in Greater Manchester and South Yorkshire, who will also serve as the Mayor’s Health Commissioner.

The English Devolution and Community Empowerment Bill allows a commissioner to be delegated some functions of the combined authority, if considered necessary.

Reporting jointly to the health service and democratically elected local mayors, these new leaders will be expected to mobilise partners locally to improve health outcomes for the local population, including by supporting delivery of the three key shifts we have set out in the 10-Year Plan: from hospital to community; from sickness to prevention; and from analogue to digital. No additional NHS performance indicators have been set centrally.

The PATHWAYS clinical trial of puberty-suppressing hormones expects to include 226 participants, a number which is not broken down geographically. As announced on 20 February 2026, the preliminary work in establishing the PATHWAYS clinical trial has been paused, following new concerns raised by the medicines regulator, the Medicines and Healthcare products Regulatory Agency (MHRA). In the meantime, the trial will not start recruiting until issues raised by the MHRA have been resolved between the regulator and the trial clinicians.