Paediatric Autoimmune Neuropsychiatric Disorders (FOI)

Request

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 

A

Please can you provide any

B

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?

C

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.

Response

A i)

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.

A ii)

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.

A vii)

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.

B

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.

C

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.

Articles applied

Article 16 - A scheduled public authority may refuse to supply information if cost excessive

(1) A scheduled public authority that has been requested to supply information may refuse to supply the information if it estimates that the cost of doing so would exceed an amount determined in the manner prescribed by Regulations. 

(2) Despite paragraph (1), a scheduled public authority may still supply the information requested on payment to it of a fee determined by the authority in the manner prescribed by Regulations for the purposes of this Article.

Article 23 - Information accessible to applicant by other means

(1) Information is absolutely exempt information if it is reasonably available to the applicant, otherwise than under this Law, whether or not free of charge.

(2) A scheduled public authority that refuses an application for information on this ground must make reasonable efforts to inform the applicant where the applicant may obtain the information.

Article 25 - Personal information

(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.

(2) Information is absolutely exempt information if –

(a) it constitutes personal data of which the applicant is not the data subject as defined in the Data Protection (Jersey) Law 2005; and

(b) its supply to a member of the public would contravene any of the data protection principles, as defined in that Law.

3) In determining for the purposes of this Article whether the lawfulness principle in Article 8(1)(a) of the Data Protection (Jersey) Law 2018 would be contravened by the disclosure of information, paragraph 5(1) of Schedule 2 to that Law (legitimate interests) is to be read as if sub-paragraph (b) (which disapplies the provision where the controller is a public authority) were omitted.