Wednesday 24 June 2015

Young Epilepsy

Just coming back from an inspirational visit to see the work of Young Epilepsy at their base in Lingfield. Here they run a school and college for people with the most difficult of forms of epilepsy, provide residential homes, hospital and diagnostic faculties, a farm and horticultural centre.  Set up in the 19th century by 2 Anglican priests who bought the magnificent site for £5k it has grown and adapted to modern day demands for a particularly vulnerable community who cannot prosper or learn in mainstream schooling and who need high levels of emotional support and care by highly professional staff and teachers.  They also do important research and they campaign for a better deal for young people with epilepsy.

Epilepsy is the most common childhood neurological disorder.  I didn't know this but on average there's one diagnosed child in every primary school and five in every secondary school.  It's a condition that is widely misunderstood and I have to say I found my visit hugely educational about the problems and challenges young people face here.  And good to hear first hand from the headteacher about how much progress can be made from, for example, the young lad who arrived feeling isolated and alone, unable to do much on his own and not wanting to learn but who thrived in an atmosphere where he was with other young people with the same challenges and a highly skilled group of teachers who understood how to teach him.

I was extremely impressed by what Young Epilepsy are doing.  It was a pleasure meeting, albeit briefly, some of the talented team there; the creative artists, the band on the pirate ship, the headteacher and one of the consultants who ran through brain scans with me to demonstrate the effects of spasms and fits on a persons' life chances.

At winter Narnia- in the creative arts area of the school!

At the new barbecue and patio area at the college

There is much debate about residential provision.  After my Winterbourne work I am a particular skeptic but I could see here how that is important in development terms. What I liked was the way for older pupils or students they have aimed to create a student campus feel to the accommodation that is nearby the college they attend.  And of course for the many young people and students here - over 200 - this will range from those who don't stay, those who live in term time and those, a much smaller number, that are there 52 weeks.  They are particularly keen that the family link is maintained in those cases.

I was struck by the commitment and enthusiasm for the task that people I met brought to their job. It brought home to me again how people in our charity sector are motivated by a vocation and passion for what they do.  And what a difference they can make to people's lives and well being.

It was good for me to see first hand the work being  done and the impressive spread of the facilities and resources at this 60 acre site at Lingfield.  This is vital to a very vulnerable community.

It puts in context the demands for curbs on fundraising - this is a charity that receives significant funding from health and local government but that spend is under pressure.  Many councils now want to limit what is spent.  So much of what they do is paid for from the generosity of the public.  And fundraising curbs that damage the ability of charities to fund raise from the public could harm beneficiaries.  The challenge for charities like Young Epilepsy in the face of coming budget cuts is not to be underestimated. 

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