NCEPOD - Chronic Neurodisability study FAQs

Chronic Neurodisability, focusing on cerebral palsy study

This study has been commissioned by Healthcare Quality Improvement Partnership
as part of the Clinical Outcome Review Programme into Child Health, under a contract awarded in 2015

Data collection for study: Ongoing
Publication date: November 2017

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I work at a specialist children’s unit or community hospital, do we need to participate?
- Yes, we will be covering all centres that see children and young people, although the degree of input will vary. We will be in touch with you over the coming months, but in the meantime if you do not currently submit data to NCEPOD then please either call us on 0207 251 9060 or email us at info@ncedpod.org.uk – with the reference of ‘child health’, to register your details.
Do community Trusts with no specialist children’s unit or community hospital have to participate?
- Yes, but only in the organisational portion of the study. If the Trust provides any of the services listed in the “initial questionnaire” then they will need to complete the sections of the “organisational questionnaire” that correspond to the services that they have indicated the Trust as providing.
  However, these Trusts do not have to participate in the patient data collection portion of the study as they do not “admit” patients in the manner specified by the inclusion criteria.
Will Local Reporters be copied into communications sent to the service leads identified in the “initial questionnaire”?
- Yes.
Do we need to give the Critical Care Level in the patient data collection spreadsheet in the column titled “Critical Care Admission”?
- No, just answer yes or no as to whether the patient had a Critical Care admission.
Are patients who are admitted as day cases included in the study?
- Yes.
Is the study just looking children’s services?
- No. The study is looking the quality of care provided to all patients with chronic disabling conditions up the age of 25 years during the study period, so this can include both children’s and adult services.
When is the study period?
- We are collecting data retrospectively from Monday 7th September to Sunday 18th October 2015
If a patient has been admitted multiple times during the study period, should each admission be recorded in the patient data collection spreadsheet?
- Yes.
Do you have further details on this project for the purpose of planning for Quality Accounts 2015/16?
- The study is in its very early stages and will only start data collecting later in the year. We will be in contact with you over the course of the year as the study develops – so we suggest you add it to your list for now, and then if we haven’t reached a data collection stage during 2015/16 we will provide confirmation that you could not have participated, as everyone will be affected.
Are admissions to “planned short break services” or “carer respite services” included in the study?
- No
Are there any grounds for exclusion?
- Yes, if the event that caused the patient’s cerebral palsy occurred after the age of 2 then we will not be including that patient in the study. Please contact us at cp@ncepod.org.uk if this applies to the patient you have been asked to complete a questionnaire for.
Why have I, as a Local Reporter, received an “Ongoing Care/Lead Clinician” questionnaire (blue questionnaire) to pass onto a clinician in my Trust if the patient it refers to was not admitted to this hospital (or even anywhere in this Trust/Health Board) on the date quoted in the covering letter?
- It is sometimes the case that the clinician responsible for a patient’s ongoing neurodisability care works in a different Trust/Health Board to where the patient was admitted. A clinician from your Trust/Health Board would have been identified as the person in charge of this patient’s ongoing neurodisability care by a clinician from a different Trust/Health Board who was in charge of their care during the admission quoted in the covering letter.

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