The Royal Free Charity does so much to help and support people when they need it most as well funding research. Every day, supporters of The Royal Free Charity are making a valuable difference to patients and staff at the three hospitals covered by the Royal Free Trust by providing services, research and equipment not covered by NHS funding.
The specific project I am raising money for is the development of the Epilepsy Risk Awareness Scale led by the amazing Heather Angus Leppan who with the staff from the Royal Free Charity have provided huge support and encouraged me to write this.
Heather has explained more about this below:
To live their best life, people with epilepsy have to strike a balance safety and activity. The Epilepsy Initiative team, based at Royal Free hospital have created an ERA scale app (Epilepsy Risk Assessment app) to assess safety for people with epilepsy around physical safety, epilepsy-related safety and mental health. This App gives us a structure for assessing these factors, and people can do this themselves and use this as a discussion point for their clinic appointments. It can also be done by health professionals. The current COVID situation means we have had to do a lot of things remotely, and this App gives people an in-depth analysis of daily life.
We are very excited to be partnering with The Royal Free Charity.. This is not just for The Royal Free, it is for people with epilepsy throughout the country and later around the world. We will share developments as they go along, and if you have any queries then please feel free to contact us.
So from my limited understanding - this is an App which allows the person with epilepsy to track their progress, risks in their home, work and leisure and how to be safer but still have the best possible quality of life. This is vital to restore self esteem, quality of life and lessen the impact of epilepsy for patients. Once developed and tested the App will be used across the NHS and healthcare settings so everyone with epilepsy can benefit from it. The cost to develop this app will be £10000 and I am desperate to raise this as quickly as possible so work can start, and people can benefit as soon as it is ready.
It is vital that we support this work as much as possible. Please support The Charity, the Epilepsy Research Fund and myself by raising money for the vital research into this condition and its' treatments.
