Young Epilepsy is a national organisation, with a rich history dating back to 1897.
Today, they are the UK’s major provider of services to children and young people with epilepsy and associated learning, emotional and behavioural difficulties.
Epilepsy is a common condition where frequent seizures occur, affecting the brain. Seizures are defined as bursts of electrical activity that temporarily hinder how it works. Symptoms of the condition vary depending on which part of the brain is involved, and can include fits, losing awareness and staring into space, becoming stiff, collapsing and more.
Originally, the organisation was started by a religious charity as a colony for teaching agricultural skills to men with learning or physical disabilities. The trading name, “Young Epilepsy”, came about in 2011, which represents their ambition to reach as many youths with epilepsy as possible.
It is estimated that in the UK alone there are 112,000 people under the age of 25 with the condition, as well as nearly 1 in 200 under the age of 18. It has been found that with the right treatment, 70% of people with epilepsy could manage to become seizure-free.
In terms of the charity’s work, Young Epilepsy is constantly catering for the huge demand that they are faced with. This demand is primarily for information and support for parents and professionals, and a need to improve access to, and quality of, health and education services.
In response to this, Young Epilepsy has put a variety of initiatives in place, including a helpline, health information resources, training courses for professionals in health, social care and education, and the promotion of good practice in schools.
In 2009, the organisation opened the Neville Childhood Epilepsy Centre. The purpose of opening this venue was to facilitate an environment where diagnostic assessment and rehabilitation could take place, as well as providing a base for their world-renowned research programme. This work is coordinated by their research team in partnership with UCL Great Ormond Institute of Child Health and Great Ormond Street Hospital.
We recently had a phone call with the team, where we discussed a grant towards the fit out for the new diagnostic suite at the Neville Childhood Epilepsy Centre in Lingfield. This will be the final phase of the project, consisting of both final configuration and fit out, which in total will cost over £740,000, £490,000 of which is under consideration by the Wolfson Foundation.
Once complete, the suite will be the first of its kind in the world. It will feature MEG (Magnetoencephalography), a neuroimaging tool that records brain function by measuring changes in magnetic fields, which will be housed within a lightweight magnetically shielded room. Having this technology at the centre will bring about transformative change for the wider health sector, where the brain imaging tool will enable accurate diagnosis and evaluation of children and young people with epilepsy.
Rosemarie emphasised that one of the biggest considerations when designing the suite was that it did not resemble a hospital. To ensure this, they have worked towards creating a space that is warm and safe, where children and families felt at ease. This was a very important element to execute effectively, as the more relaxed people are, the more accurate results will be from the tests.
As a result of our assessment, Young Epilepsy ended up receiving a grant of £10,000 from The Hospital Saturday Fund.
To learn more about Young Epilepsy, visit: youngepilepsy.org.uk/