Released 2 August 2022
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
1) Please can you provide any
a) clinical guidance,
d) diagnostic pathway
e) treatment pathways
f) management pathway
g) 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.
2a) Please could you also provide for each condition or probable/ suspected condition i)-xiv) above;
a) the number of paediatric patients presenting with these conditions for each year for the past 5 years? &
b) how many were referred for treatment
c) how many referrals rejected
d) how many referrals were accepted
e) how many patients were referred to another service outside of the trust. Please could this be provided in a table format?
3) 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.
Assistance provided under Section 16 [duty to assist]:
The Trust’s Paediatric Service has advised that the majority of the conditions mentioned in your request are psychiatric and we would not receive referrals or make diagnoses for these conditions. Our colleagues at Sussex Partnership NHS Foundation Trust provide mental health and learning disability services for this region and are better placed to assist with these elements of your request.
We can confirm that University Hospitals Sussex NHS Foundation Trust does not currently provide a local long COVID service.
With regard to conditions like xi) autoimmune encephalitis with an idiopathic cause and xii) idiopathic transverse myelitis, we understand that these are very rare conditions that would only be treated as acute presentations in our emergency departments. We would not receive referrals for these conditions.
In such cases, these conditions would be managed with advice and support from the Evelina London Children’s Hospital using their guidelines. The Trust does not have its own guidelines or pathways for these conditions. Since this information is not currently held by the Trust it is therefore not available under the terms of the Act at this time.