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.
Asked by: Jonathan Ashworth (Labour (Co-op) - Leicester South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what estimate he has made of the cost of providing care to those with (a) PANS and (b) PANDAS who have (i) been hospitalised and (ii) left with enduring and life-changing symptoms after receiving in-effective healthcare treatment.
Answered by Maria Caulfield
The Department has made no such estimate as the number of patients affected in this way is currently unknown.
Asked by: Jonathan Ashworth (Labour (Co-op) - Leicester South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of recognising PANS and PANDAS as a condition eligible for personalised NHS treatment.
Answered by Maria Caulfield
No assessment has been made.
Asked by: Jonathan Ashworth (Labour (Co-op) - Leicester South)
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 ensure that children and young people living with PANS and PANDAS receive effective, patient-centred care.
Answered by Maria Caulfield
Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)
are an emerging area of research and clinical interest for professionals working with children and young people. Should the evidence base develop further, we would look to organisations such as the National Institute for Health and Care Excellence to update clinical policy. NHS England would then consider the development of care pathways for those living with relevant these conditions.
In the meantime, integrated care systems are responsible for planning care for their populations affected by these conditions and healthcare professionals will want to take account of any new research and developments in guidance to ensure that they can continue to provide high quality care to their patients.
Asked by: Jonathan Ashworth (Labour (Co-op) - Leicester South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent discussions he has had with (a) Cabinet colleagues and (b) stakeholders on the development of care pathways for children and young people living with (i) Paediatric Acute-onset Neuropsychiatric Syndrome (PANS), (ii) Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and (iii) associated immune mediated/post-infective neuro-behavioural disorders.
Answered by Maria Caulfield
No such discussions have taken place recently.