Paediatric Autoimmune Neuropsychiatric Disorders (FOI)
Paediatric Autoimmune Neuropsychiatric Disorders (FOI)Produced by the Freedom of Information office
Authored by Government of Jersey and published on 22 September 2022.
Prepared internally, no external costs.
Under the freedom of information act please could you provide the following information in relation to the conditions or probably or suspected conditions in i-xiv) below?
i) Pandas (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)
ii) PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)
iii) Long COVID
iv) immune mediated neuro behaviour conditions
v) neuro psychiatric conditions
vi) behavioural changes or altered behaviour
vii) sudden onset tics
viii) sudden onset ocd
ix) sudden onset eating difficulties
x) bodily distress disorder
xi) autoimmune encephalitis with an idiopathic cause
xii) idiopathic transverse myelitis
xiii) immune dysregulation
xiv) psychiatric disorder
Please can you provide any
i) clinical guidance
iv) diagnostic pathway
v) treatment pathways
vi) management pathway
vii) the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code for each of the conditions i)-xiv) above in paediatric patients.
i) Please could you also provide for each condition or probable/ suspected condition i)-xiv) above the number of paediatric patients presenting with these conditions for each year for the past 5 years?
ii) how many were referred for treatment
iii) how many referrals rejected
iv) how many referrals were accepted
v) how many patients were referred to another service outside of the trust. Please could this be provided in a table format?
Please could you provide me with any minutes of meetings which decided how patients are treated following the British Paediatric Neurology Association Consensus Statement dated April 2021 and details of any changes in how the trust treated or diagnosed patients following this statement along with details of who made the decision to implement any changes.
The Paediatric team at the Jersey General Hospital (JGH) seeks clinical guidance on all the conditions from i-xiv from a tertiary centre in the UK. Where applicable the JGH follows NICE guidelines on neurological conditions.
‘Psychiatric disorder’ (xiv) is a broad term that could encompass a multitude of conditions, some of which may be diagnosed and treated locally by Paediatric and Mental Health professionals in accordance with NICE guidelines, but also includes conditions requiring the involvement of tertiary centre services, as noted.
Policies followed in regards to management of the conditions from i-xiv are based on advice from the tertiary centre in the UK. Cases are discussed with the Paediatric Neurological Team in Southampton NHS trust which runs a network service for all children presenting with neurological symptoms including those listed from i-xiv. This is offered with an on-call 24-hour per day / 7-days per week consultant led service for advice and urgent planning.
A iii to vi)
The procedure includes sharing of diagnostic scans and history with the specialist neurology team at Southampton General Hospital (SGH). Consultation is either in-person or via telemedicine. The diagnostic investigations are initiated either at JGH or, if complex, at SGH. Images from Jersey are shared with SGH consultants. These are discussed in joint neurology and neuroradiology multi-disciplinary meetings at SGH and a treatment plan is decided. In addition, a Paediatric Neurology Consultant from SGH also holds consultations at JGH for Jersey based patients. The Paediatric doctors at JGH continue with regular follow up and treatment continuity for patients, working in close association with specialist doctors at SGH.
The eleventh revision of the World Health Organization’s (WHO) International Statistical Classification of Diseases and Health Related Problems (ICD-11) came into effect from 1st January 2022, though implementation is subject to transitional arrangements which have currently been allowed for at least five years.
Jersey follows the NHS National Clinical Coding Standards. ICD-11 has not been adopted and implemented across the NHS as yet and the tenth revision (fifth edition) of the WHO’s International Statistical Classification of Diseases and Health Related Problems (ICD-10) remains a mandatory information standard at this time.
Further information on the pre-implementation of ICD-11 can be found on NHS Digital at:
NHS Digital ICD-114 (NHS)
The ICD-11 classification is available on the WHO website at:
ICD-11 International Classification of Diseases 11th Revision (WHO)
As this information is accessible by other means, Article 23 of the Freedom of Information (Jersey) Law 2011 has been applied.
This information is not currently held by JGH in a format that would allow a response within the time cost limits set for Freedom of Information requests. Reasons for referral will be available in individual medical records, but a central record is not held. Examining individual records would exceed the timescales prescribed in the Freedom of Information (Costs) (Jersey) Regulations 2014. Therefore, Article 16 of the Freedom of Information (Jersey) Law 2011 has been applied.
Treatment planning for patients with neurological symptoms is led by joint discussion with the neurology specialist teams at Southampton NHS trust and JGH Paediatric doctors. These specialists are British Paediatric Neurology Association (BPNA) members and they make sure that the child and the family have appropriate multi-disciplinary teams and follow the BPNA guidelines. JGH ensures that children have equity of access and get reviewed in a timely manner between neurology, mental health and appropriate teams with necessary pharmacological treatments. The multi-disciplinary team (MDT) discussions are documented in the patient’s notes which cannot be shared for data protection purposes. Article 25 of the Freedom of Information (Jersey) Law 2011 has been applied.
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(1) Information is absolutely exempt information if it constitutes personal data of which the applicant is the data subject as defined in the Data Protection (Jersey) Law 2005.
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