Youth Voice Member Annie

Major step forward for children's epilepsy care in England

Bundle of care

NHS England has launched a new ‘bundle of care’ for children’s epilepsy services setting out standards that all young people should expect.   

The new recommendations focus on four key areas of improvement for children’s epilepsy care, including: 

  • addressing the regional variation in care between epilepsy services
  • improving referrals for epilepsy surgery and other specialist services
  • improving transition from paediatric to adult epilepsy services
  • increasing access to mental health checks and support

Read more here NHS England » National bundle of care for children and young people with epilepsy

We have worked hard to collaborate with NHS England and key stakeholders to ensure the bundle of care is shaped by the voices and experiences of young people themselves. Young Epilepsy CEO, Mark Devlin, co-chairs the National Children and Young People Epilepsy Oversight Group alongside NHS England and has taken a leading role in the development of the recommendations in addition to the valued contributions of many young people that took part in the oversight group and national working groups to share their experiences. Crucially, quotes highlighting young people’s experiences have been included in the bundle of care evidencing their vital contribution. 


"It’s been amazing to be part of the NHS working groups where I've got to meet people I could never have imagined and have my voice heard.

It's easy to forget that what youth groups say today helps determine the futures of children that haven't even been born yet, so to speak for them is truly an honour."
Annie, Young Epilepsy Youth Voice Network Member

What next?

We will continue to work with regional NHS leads across England to support them as they develop their programmes to make progress across the four priority areas. In particular, providing information about our support services, reports on young people’s experiences, guidance on young people’s participation and connecting young people with opportunities to influence epilepsy services in their area.  


We are proud to have worked with young people, NHS England and colleagues to develop and shape a bundle of care for children’s epilepsy services.

We look forward to supporting the NHS as they move forward with the recommendations to improve access to higher standards of care more consistently for young people and families. 
Mark Devlin, Young Epilepsy CEO

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