Information for patients, parents and carers - CHR-UK

The CHR-UK team aim to provide parents, patients and carers with information about why the programme of work is needed, how you or your child may be involved with the research and how the information we collect will be used. 

Information leaflets

For patients in England, Scotland, Wales and Channel Isles (PDF, 300KB)

For patients in Northern Ireland - please contact us on research@rcpch.ac.uk

For hospital staff (PDF, 300KB)

Charity stakeholders

The CHR-UK programme also has a wide range of stakeholders, including epilepsy charities that have been been recommended by the parents and carers of our Topic Expert Group and have also been involved with the development of the leaflets. 

Epilepsy Action

Aim to improve epilepsy services and raise awareness of the condition, by offering support to patients and families.  In addition to funding research, the charity also develops the Epilepsy Sapphire Nurses scheme. Sapphire nurses encourage the setting up of specialist epilepsy clinics in hospitals and GP practices and also the participation of research into epilepsy.

Epilepsy Action website 

SUDEP Action

Committed to preventing Sudden Unexpected Death in Epilepsy and other epilepsy related deaths. The charity provide support to patients and families in addition to researching the risk factors for epilepsy-related mortality.

SUDEP Action website 

Other stakeholders' websites

Young Epilepsy 

Epilepsy Society  

Epilepsy Connections 

British Paediatric Neurology Association (BPNA) 

Association of Neurophysiologycal Scientists 

Epilepsy Nurses Association

 Joint Epilepsy Council 

Joint Neurosciences Council 

Neuralogical Alliance 

Scottish Epilepsy Initiative 

Scottish Epilepsy Centre 

British Association of Community Child Health 

British Association of Childhood Disability 

Paediatric Intensive Care Audit Network

Epilepsy Wales 

 

Please note that the RCPCH are not responsible for the content provided by external organisations.