Epilepsies in children, young people and adults (update)

Consultation on draft quality standard – deadline for comments 5pm on Monday 10 July 2023

Please email your completed form to: [email protected]

This draft quality standard is now out for consultation. As a stakeholder, BACD is invited to submit comments directly to NICE.

The consultation page has all the information and documents you need to review the draft quality standard. 

Note: During development of the draft quality standard, the Medicines and Healthcare
products Regulatory Agency announced that new safety measures for valproate-containing medicines are to be put in place. NICE’s guideline on epilepsies in children, young people and adults will be updated when more information on these safety measures is published. The draft quality standard does not cover the new safety measures.

NICE would like to hear your views on the draft recommendations presented in the guideline, and any comments you may have on the rationale and impact sections in the guideline and the evidence presented in the evidence reviews documents. NICE would also welcome views on the Equality Impact Assessment.

Use the form to comment on the content of the quality standard (i.e. the statements and other sections e.g. rationale, measures etc.), as well as answer the following questions:

  1. Does this draft quality standard accurately reflect the key areas for quality improvement?
  2. Can data for the proposed quality measures be collected locally? Please include in your answer any data sources that can be used or reasons why data cannot be collected.
  3. Do you think each of the statements in this draft quality standard would be achievable by local services given the net resources needed to deliver them? Please describe any resource requirements that you think would be necessary for any statement. Please describe any potential cost savings or opportunities for disinvestment.
  4. For draft quality statement 1: Is it feasible for epilepsy specialist nurses to be the ‘clinician with expertise in epilepsy’ who identifies the cause of a seizure and ensures a correct diagnosis is made?
  5. For draft quality statement 5: Statement 5 covers planned epilepsy appointments. Are there specific types of epilepsy appointments that should be included or excluded from this statement?
  6. For draft quality statement 5: Is there enough time and capacity at epilepsy appointments to ask about cognitive function, mental health, social and emotional wellbeing and, where relevant, neurodevelopment and learning disabilities?
  7. For draft quality statement 5: Statement 5 covers cognitive function, mental health, social and emotional wellbeing, and, where relevant, neurodevelopment and learning disabilities. It also covers all people with epilepsy. Would it be helpful to focus the statement on a smaller number of areas or a particular population group? If so, what should it focus on?
  8. For draft quality statement 5: What is an appropriate outcome measure for this statement? Please include any known data sources for suggestions.
  9. What are the challenges to implementing the NICE guidance underpinning this quality standard? Please say why and for whom. Please include any suggestions that could help users overcome these challenges (for example, existing practical resources or national initiatives).

To submit comments for inclusion in the BACD submission to NICE complete the form below and return to [email protected] by noon, Monday 10 July 2023. Please note that we can only accept submissions received on this form. 

We are interested to hear from you even if you have no specific comments to make, and are happy with the consultation document, as this will enable us to feedback to NICE that we support the document.

Comments Form: Epilepsies in children, young people and adults (update)
British Academy of Childhood Disability is registered in England and Wales under charity number 1177868
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