Children's Epilepsy

four circles with star heart, people and arrow icons inside

Children's Epilepsy

This page provides information about our Children's Epilepsy team, their services, and resources to help manage epilepsy. 

Meet the team

The epilepsy team consists of consultants and epilepsy specialist nurses, and provides support to patients and their families living in the Wakefield district and North Kirklees. 

Wakefield and Pontefract

  • Dr Scott (Consultant Paediatrician)
  • Dr Richardson (Consultant Paediatrician)
  • Carly Blackburn (Children’s epilepsy nurse specialist)
  • Margaret Lawes (secretary)

Dewsbury

  • Dr Singh (Consultant Paediatrician)
  • Diana Mackie (Children’s epilepsy nurse specialist)
  • Debbie Pickard (secretary)

New patients with first possible seizure

If your child has a possible seizure, we understand this can be a frightening experience. Not all episodes are caused by epilepsy, and there can often be other explanations.

After your child’s first possible seizure, they will be referred to see a consultant in clinic. This leaflet provides information about the next steps and the pathway your child may follow.

Keeping your child safe

While your child is under investigation, it is important to know how to keep them safe. The following leaflets provide helpful information:

Further investigations

Your child may need further investigations, such as an EEG or MRI scan. The following links explain what these involve:

While waiting for your clinic appointment

While waiting for your first appointment:

  • If your child has further episodes, try to record them on video if it is safe to do so
  • Please see the V-create section for more information

If your child experiences further episodes and you are concerned, you can contact the consultant via their secretary. Please note this is not for emergencies — in an emergency, call 999, or 111 for urgent advice.

Contact details

Wakefield

Kirklees

Patients with a confirmed diagnosis of epilepsy

Patients who receive a diagnosis of epilepsy will be supported by the epilepsy team. This includes a consultant and epilepsy nurse specialists, who are independent nurse prescribers. Families will receive support from the epilepsy nurse specialists to help manage the condition, including completing an individual epilepsy care plan. Patients will also attend regular reviews in the epilepsy clinic with their named consultant and epilepsy nurse specialist.

When and how to contact the team
Between appointments, you may need to contact us if you have concerns about your child’s epilepsy, such as: breakthrough seizures; problems with your child’s medication; support with managing your child’s condition; emergency medication training; epilepsy care plans; medication reviews; and school support.

Contact details for the service can be found on your child’s epilepsy care plan. Patients with a confirmed epilepsy diagnosis can also send queries or concerns to: midyorks.paediatric.epilepsy@nhs.net.

Please note: the epilepsy service is not an emergency service; the team operates Monday to Friday (excluding bank holidays); and as a small team managing a high volume of patients alongside clinical commitments, we may not always be able to respond on the same day. For urgent or out-of-hours advice (including urgent prescription requests), contact NHS 111. In an emergency, attend A&E or call 999.

Medication

Following diagnosis, your child may start regular medication. The first prescription will be provided by the epilepsy team and should be collected from one of the hospital pharmacies. Any further prescriptions will need to be arranged through your GP.

If your child experiences further breakthrough seizures, their medication dose may need to be reviewed and adjusted.

There are many different anti-epileptic medications, which work in different ways and can have varying side effects. For more information about specific medications, please visit the links below:

Please ensure your GP has received the clinic letter from your epilepsy appointment and that any new medication has been added to your child’s repeat prescription.

Allow up to two weeks for prescriptions from your GP. It is important to check medication regularly. When you have around two weeks of medication remaining, contact your GP to request your next prescription.

If you run out of medication and are unable to obtain a prescription, you can request an emergency supply by calling 111. You will need to provide the name and dose of the medication. Please note that we are not able to provide emergency prescriptions as we are not an acute service.

Charlie Card – SUDEP Action

The Charlie Card provides up to 72 hours’ supply of epilepsy medication from any pharmacy that has it in stock. If you are unable to obtain a prescription in time, this can help ensure continued access to medication until you can speak to your GP.

Please use this link to apply for a Charlie Card.

Ongoing prescriptions from specialist teams

Your local epilepsy team can provide ongoing prescriptions for the following medications:

  • Stiripentol
  • Chloral hydrate
  • Clobazam
  • Cenobamate
  • Paraldehyde

The tertiary epilepsy service will provide ongoing prescriptions for:

  • Cannabidiol (CBD)
  • Everolimus
  • Cenobamate
  • Fenfluramine 

The tertiary epilepsy team also manage patients that have a VNS and on a ketogenic diet.

Emergency medication

Some patients are prescribed emergency medication for prolonged seizures. It is important that you are familiar with when and how to give this medication, as outlined in your child’s epilepsy care plan.

Further guidance is available at the links below:

Please ensure you have reviewed your child’s care plan carefully.

Helpful websites for epilepsy support and management

The following national websites provide further information on managing epilepsy and offer additional support and advice.

Epilepsy Action

Young Epilepsy

SUDEP Action

Matthew's Friends

The Sleep Charity

The Brain Charity

Cerebra

Safety devices – information on monitors that can be purchased. These devices are not supplied by the NHS. Please see the charities below, which may be able to offer support with funding.

HOPE for Epilepsy

Alarms and monitors - Epilepsy Action

Monitoring seizures | Young Epilepsy | UK

Charities that may be able to provide financial support, including funding for monitors and other safety devices.

The Daisy Garland

 Jon Shaw Foundation

Florence Nightingale Aid in Sickness Trust

Grants - Family Fund

Special equipment for children - Variety, the Children's Charity

 

Support in Wakefield – community support for mental health and disabilities

West Yorkshire Healthier Together

Wakefield Awareness Support Project - Kids

Compass RISE (Wakefield)

Wakefield Parent Carer Forum

Wakefield SENDIASS (formerly WESAIL)

Growing Healthy 0-19 Wakefield

Family Hubs – Wakefield Families Together 

Child and adolescent mental health service (CAMHS)

 

Support in Kirklees – community support for mental health and disabilities

Kirklees Keep in Mind

Child and adolescent mental health service (CAMHS) (Kirklees)

Kirklees SEND Local Offer

Kirkless KIAS

KiNETIC                      

 

Patient feedback

Shelly's daughter, Ava, was diagnosed with Epilepsy, and both mum and daughter attend our support groups.

Shelly said: "My daughter was diagnosed with Epilepsy over a year ago now and this hit us very hard as parents, but I have been supported by Children’s Epilepsy Specialist Nurse, Carly Blackburn, enormously and she is now running epilepsy groups for families. My experience of these groups has been very positive, meeting other parents in the same situation as us. I now feel calmer and a little bit more confident in myself when dealing with my daughter's seizures. Sometimes you think it's just you dealing with it but once you realise that you're not alone it doesn't seem as scary. Also having contact with Carly out of clinic and being able chat once a month its just another great opportunity."

Ava added: "The meetings have helped me a lot. It's nice to hear other children talk about their experiences. I realised I wasn't the only one who is struggling."