Better futures for young lives with epilepsy and associated conditions

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Improving Care in Epilespy for children and families (ICE)

Darsai Report

Formerly the Darzi Fellowship Project.

Aim

To implement an innovative model of care that improves outcomes by better reflecting the broad impact epilepsy has on the individual person, by virtue of being young person and family-centred, integrated across different sectors providing care, and measured on meaningful outcomes.

What this means

We want to ensure services for epilepsy are joined up, and are provided in partnership with young people and families. We want to ensure they receive personalised, holistic care. Our work to date has told us this is imperative. This requires improved communication, understanding what outcomes really matter, tailoring care and thinking with a whole systems strategy across all sectors.

Update

This is a collaboration project between Young Epilepsy, UCL Great Ormond Street Institute of Child Health, UCLPartners and Whittington Health.

Current work streams include the development of an epilepsy registry linked to individualised care plans, the co-creation of young people's networks, and the commissioning of an economic evaluation of the costs versus cost-savings of providing integrated epilepsy care.

To achieve this, we need to make intelligent use of relevant data, keeping young people and families at the centre, such that it improves care both for the individual and as a whole for the 112,000 young people under 25 in the UK with epilepsy.

Project Team

Amit Bali, Monica Lakhanpaul, Kerry Robinson, Helen Cross, Carol Long

Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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