Asked by: Paul Kohler (Liberal Democrat - Wimbledon)
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 availability of early intervention and treatment pathways for children with Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS); and what steps he is taking to improve access to timely diagnosis and treatment.
Answered by Preet Kaur Gill
Paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) are distressing conditions for children, young people, and their families, and we recognise the challenges that families face.
The Department acknowledges the importance of raising awareness of PANS/PANDAS to improve diagnosis. That is why we welcome the formation of the PANS PANDAS Steering Group which includes representatives from key royal colleges, specialist clinical bodies, and the national charity PANS PANDAS UK. The steering group has already taken action to improve awareness, understanding, and care.
Work is underway to develop the first United Kingdom clinical guidelines for PANS and PANDAS, led by a multidisciplinary group and supported by the Royal College of Paediatrics and Child Health. These guidelines are expected to be published in autumn 2026 and will support more consistent care across the system. Pending publication, the PANS PANDAS Steering Group recommends that clinicians be aware of existing international peer-reviewed guidelines, including the PANS research consortium treatment guidelines, published in 2017, and the clinical guidance for diagnosis and management of PANS in the Nordic Countries, published in 2021.
With the backing of NHS England, a dedicated PANS PANDAS research group is advancing efforts to strengthen the evidence base, including through a nationwide surveillance study, designed to identify the number of children and young people presenting to healthcare professionals with symptoms matching the diagnostic criteria for PANS and PANDAS.
In addition, a cross-sector group is developing practical guidance for local authorities to improve support for children and young people living with PANS and PANDAS. Publication is due later this year, ensuring more consistent access to appropriate educational and social care services.
More widely, healthcare professionals are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This includes taking account of new research and developments in guidance, such as that produced by the National Institute for Health and Care Excellence, to ensure that they can continue to provide high quality care to all patients.
Asked by: Paul Kohler (Liberal Democrat - Wimbledon)
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 adequacy of the level of clinical awareness and training on Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) among NHS professionals; and what steps he is taking to reduce variations in diagnosis and care.
Answered by Preet Kaur Gill
Paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) are distressing conditions for children, young people, and their families, and we recognise the challenges that families face.
The Department acknowledges the importance of raising awareness of PANS/PANDAS to improve diagnosis. That is why we welcome the formation of the PANS PANDAS Steering Group which includes representatives from key royal colleges, specialist clinical bodies, and the national charity PANS PANDAS UK. The steering group has already taken action to improve awareness, understanding, and care.
Work is underway to develop the first United Kingdom clinical guidelines for PANS and PANDAS, led by a multidisciplinary group and supported by the Royal College of Paediatrics and Child Health. These guidelines are expected to be published in autumn 2026 and will support more consistent care across the system. Pending publication, the PANS PANDAS Steering Group recommends that clinicians be aware of existing international peer-reviewed guidelines, including the PANS research consortium treatment guidelines, published in 2017, and the clinical guidance for diagnosis and management of PANS in the Nordic Countries, published in 2021.
With the backing of NHS England, a dedicated PANS PANDAS research group is advancing efforts to strengthen the evidence base, including through a nationwide surveillance study, designed to identify the number of children and young people presenting to healthcare professionals with symptoms matching the diagnostic criteria for PANS and PANDAS.
In addition, a cross-sector group is developing practical guidance for local authorities to improve support for children and young people living with PANS and PANDAS. Publication is due later this year, ensuring more consistent access to appropriate educational and social care services.
More widely, healthcare professionals are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This includes taking account of new research and developments in guidance, such as that produced by the National Institute for Health and Care Excellence, to ensure that they can continue to provide high quality care to all patients.
Asked by: Alison Bennett (Liberal Democrat - Mid Sussex)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that all paediatric departments have access to specialists trained in the diagnosis and treatment of Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).
Answered by Zubir Ahmed
The Government recognises that paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) can be distressing conditions for children, young people, and their families, and that assessment and management can be clinically complex.
NHS England welcomes the formation of the PANS PANDAS Steering Group (PPSG), which includes representatives from key royal colleges, specialist clinical bodies, and the national charity PANS PANDAS UK. Since its establishment, the PPSG has launched several strategic initiatives to improve awareness, understanding, and care for affected children and young people. This includes the development of United Kingdom clinical guidelines and the formation of the PANS PANDAS Research Group and the Education, Social Care and Health Group.
Responsibility for commissioning and planning local health services sits with integrated care boards, which are expected to ensure local services have access to the appropriate clinical expertise to meet the needs of their populations and to consider emerging evidence and guidance as it develops.
The Department continues to support research through the National Institute for Health and Care Research, which welcomes funding applications into all aspects of human health, including PANS and PANDAS. As the evidence base strengthens, bodies such as the National Institute for Health and Care Excellence will consider whether updates to national guidance are appropriate.
Asked by: Cameron Thomas (Independent - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will hold discussions with the National Institute for Health and Care Excellence on the development of guidelines for PANS and PANDAS.
Answered by Zubir Ahmed
Decisions on topics for new or updated guidance from the National Institute for Health and Care Excellence (NICE) are considered through an established NICE prioritisation process with decisions overseen by a prioritisation board, chaired by NICE’s Chief Medical Officer.
NICE’s prioritisation board considered the development of guidance on paediatric acute-onset neuropsychiatric syndrome and paediatric autoimmune neuropsychiatric disorder associated with streptococcus in November 2024 and concluded that there is insufficient evidence in this area to develop useful guidance.
Asked by: Cameron Thomas (Independent - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent assessment his Department has made of the adequacy of the provision of (a) treatment and (b) care for children and young adults with (i) PANS and (ii) PANDAS.
Answered by Zubir Ahmed
Information on the number of children and young adults with paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS) is not collected at present as there are no internationally agreed criteria to identify these conditions. The PANS PANDAS Steering Group is currently working on a consensus for case identification to support a national survey.
Due to the emerging nature of the evidence base there is currently a lack of consensus on what good clinical practice and training on PANS and PANDAS may look like, and no assessments have therefore been made.
Asked by: Cameron Thomas (Independent - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the adequacy of the the availability of training programmes on (a) PANS and (b) PANDAS for NHS staff.
Answered by Zubir Ahmed
Information on the number of children and young adults with paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS) is not collected at present as there are no internationally agreed criteria to identify these conditions. The PANS PANDAS Steering Group is currently working on a consensus for case identification to support a national survey.
Due to the emerging nature of the evidence base there is currently a lack of consensus on what good clinical practice and training on PANS and PANDAS may look like, and no assessments have therefore been made.
Asked by: Cameron Thomas (Independent - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what information his Department holds on the number of children and young adults with (a) PANS and (b) PANDAS.
Answered by Zubir Ahmed
Information on the number of children and young adults with paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS) is not collected at present as there are no internationally agreed criteria to identify these conditions. The PANS PANDAS Steering Group is currently working on a consensus for case identification to support a national survey.
Due to the emerging nature of the evidence base there is currently a lack of consensus on what good clinical practice and training on PANS and PANDAS may look like, and no assessments have therefore been made.
Asked by: Dan Carden (Labour - Liverpool Walton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve (a) diagnosis and (b) treatment for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
Answered by Stephen Kinnock - Secretary of State for Wales
The Department recognises the importance of raising awareness of conditions such as paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS) among healthcare professionals, and improving the health and care system for the people living with them.
The National Institute for Health and Care Excellence (NICE) is the independent, expert body that develops evidence-based guidelines for the National Health Service on best practice. While the NICE currently has no plans to issue guidance on PANS and PANDAS, should the evidence base develop further, we would look to the NICE to update clinical policy.
In the meantime, integrated care systems are responsible for planning care for their populations’ conditions, and clinicians will want to take account of any new research and developments in guidance, such as those being overseen by the PANS PANDAS Steering Group, to ensure that they can continue to provide high quality care to their patients.
Asked by: Julian Lewis (Conservative - New Forest East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will take steps to facilitate the circulation of material to General Practitioners advising how to (a) recognise and (b) treat with (i) antibiotics and (ii) anti-inflammatory medications the conditions of (A) Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and (B) Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS).
Answered by Stephen Kinnock - Secretary of State for Wales
The National Institute for Health and Care Excellence (NICE) is the independent, expert body that develops evidence-based guidelines for the National Health Service on best practice. While the NICE currently has no plans to issue guidance on paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS), should the evidence base develop further, we would look to the NICE to update clinical policy.
In the meantime, integrated care systems are responsible for planning care for their populations’ conditions, and clinicians will want to take account of any new research and developments in guidance, such as those being overseen by the PANS PANDAS Steering Group, to ensure that they can continue to provide high quality care to their patients.
Asked by: James Naish (Labour - Rushcliffe)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department has considered introducing mandatory training for health professionals on PANS and PANDAS.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
General practitioners and other healthcare professionals are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This includes taking account of new research and developments in guidance, such as that produced by the National Institute for Health and Care Excellence, to ensure that they can continue to provide high quality care to all patients.
The training curricula for postgraduate trainee doctors is set by the relevant medical royal college and has to meet the standards set by the General Medical Council (GMC), which is an independent statutory body. The GMC has the general function of promoting high standards of education and co-ordinating all stages of education to ensure that medical students and newly qualified doctors are equipped with the knowledge, skills, and attitudes essential for professional practice.
Whilst curricula do not necessarily highlight specific conditions for doctors to be aware of, they instead emphasise the skills and approaches that a doctor must develop in order to ensure accurate and timely diagnoses and treatment plans for their patients. Whilst the Department, through NHS England, is able to influence the content of training courses, we consider that the curricula are best set by the regulators, royal colleges, and professional bodies working together.