Asked by: Cameron Thomas (Liberal Democrat - 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 - Parliamentary Under-Secretary (Department of Health and Social Care)
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 (Liberal Democrat - 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 - Parliamentary Under-Secretary (Department of Health and Social Care)
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 (Liberal Democrat - 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 - Parliamentary Under-Secretary (Department of Health and Social Care)
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 (Liberal Democrat - 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 - Parliamentary Under-Secretary (Department of Health and Social Care)
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 - Minister of State (Department of Health and Social Care)
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 - Minister of State (Department of Health and Social Care)
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.
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 made an assessment of the potential merits of allocating further funding for research into improving treatments for PANS and PANDAS.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We recognise that more research is necessary to understand the multiple factors leading to pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), and to understand how best to raise awareness among healthcare professionals on how to diagnose these conditions and support affected children and their families.
The Department funds research through the National Institute for Health and Care Research (NIHR), which welcomes funding applications for research into any aspect of human health, including conditions such as PANS and PANDAS.
In October 2024, a project led by NIHR BioResource announced a partnership with PANS PANDA UK to delve further into immune conditions and mental health, and how to raise awareness of these neuropsychiatric conditions.
Asked by: Freddie van Mierlo (Liberal Democrat - Henley and Thame)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to the meeting between PANS PANDAS and his Department on 19 November 2024, what recent assessment he has made of the adequacy of funding for research into that condition.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We are supportive of the progress made by PANS PANDAS UK and the PANS PANDAS Steering Group to undertake a national surveillance study, develop a clinical guideline, and produce guidance for professionals, children, young people, and families.
Funding for research into rare diseases such as pediatric acute-onset neuropsychiatric syndrome and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections is available through the National Institute for Health and Care Research, and researchers in this area are encouraged to come forward with proposals that can further our understanding.
Asked by: Caroline Dinenage (Conservative - Gosport)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to improve treatment pathways for (a) PANS and (b) PANDAS patients.
Answered by Andrew Gwynne
The Department recognises the importance of raising awareness of rare diseases such as paediatric acute-onset neuropsychiatric syndrome (PANS) and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) among healthcare professionals and improving the health and care system for people living with such conditions.
We are supportive of the progress made by PANS PANDAS UK and the PANS PANDAS Steering Group to undertake a national surveillance study, develop a clinical guideline and produce guidance for professionals, children, young people and families.