How and why we started this group
Epilepsy surgery friends was
formed when a group of 4 men met through supporting
charities to share experiences of having surgery. Anthony
Williams, Carl Bennett, Nick Pierce and Richard Guthrie
were the first members.
The very first one to of had
surgery was Carl who was so thankful that surgery had
stopped his seizures that he wanted to offer his support to
others alike. To do this he asked Epilepsy Action to put a
line in their magazine offering his support to others
thinking about having surgery. Anthony spotted this in their
magazine so immediately contacted them so he could talk to
Carl as he'd been told by a specialist that surgery may be
Like any surgery there were lots of questions to be answered
and the only ones who could answer them was someone like
Carl who had been right through the process.
They soon met after their initial contact via Epilepsy
Action and became best of friends.
Anthony was relieved to learn for the first time that there
was someone out there that fully understood what he was
going through which gave him the first bit of hope to ending
Carl introduced more people to Anthony
including Nick who was also thinking about having surgery
himself. This meant both could now talk to someone who like
each other were thinking about having surgery and also
someone who had already had the surgery which both agreed
was very helpful.
All the tests right through to the
surgery were very stressful but having someone from both
sides to guide each other made such a difference making the
process less stressful.
Eventually Nick and Anthony were
both cleared as being suitable to have the surgery so both
went for it after convincing each other it was the best road
to go down.
Just as before the surgery there were lots of
questions that both needed answers to so having Carl there
to answer them again made the recovery less stressful and
Once Anthony had recovered he was so
pleased by the support he got from Carl both before and
after the surgery that he decided it was his turn to share
his experience and help others like Carl did. To do this he
started to attend a monthly surgery meeting organised by the
Brain & Spinal Injuries Centre Charity (BASIC) where he met
Richard. Anthony introduced Richard to Carl and Nick who
after lots of questions was convinced himself that surgery
was the best route to take.
After all had recovered
sufficiently they started to have days and nights out
together as by now they'd become true friends, more so
because they had similar interests like Music, Travelling,
Walking and Photography.
At one of their nights out they
were all discussing how hard it was to find suitable people
to talk to so thought it would be good if they could do
something to make it easier for others alike to connect with
others. They all agreed if they could do something it would
be a great way not only to help others but also to show
their respect to everyone involved at the hospitals that
made surgery a success for them.
They put two and two
together who had all had Epilepsy Surgery and became good
true Friends from it so decided whatever they did they'd
call it Epilepsy Surgery Friends.
started to look for ways to connect people and discovered
the best way forward would be to start a page on Facebook
and see if anyone got in touch. There were a few enquiries
but not as many as was first expected so he decided a
Facebook page was only suitable as a way to advertise and
not for open discussions. Because of this he decided to
start a closed Facebook group where members join to see the
discussions and ever since it's gone from strength to
At first it was very hard for them to attract
others into the group because men being men often shown
their best times together from a public house and knew it
wasn't the image they needed if they were to attract new
turning point came when they decided to go for a day out in
Chester organised via a group event on the open Facebook
page. They shared the event with local centres in the
Chester area that they would be in the area if anyone wanted
to talk and share their experience. Eventually it got the
attention of their first female member called Valerie who
like them had already had the surgery and again wanted to
use her experience to help others. The day went really well
and at last the 4 men were able to say they had changed the
image in the right direction.
Another turning point came
when the Epilepsy Society helped the group to advertise it
by putting an article in one of their magazines which helped
target a wider audience.
The proof came further down the
line as more members began to join the closed group and
started chatting with other members alike. This became
another turning point as the group now had its first
children in on the discussion by their parents who were
anxious to know what surgery could mean to their children.
Once one of the children had the surgery yet another turning
point came when the first large event was created in London
by a member called Sam who was inspired by other smaller
events seen within the group. Anthony knew this was a
perfect opportunity to get more interest and thought it
would be good to all wear a T-shirt to make it easier to see
each other, raise positive awareness and get passers by
The day went really well as it was very
informative and gave others hope about what surgery could
mean for them. Not only that it was a fantastic day of
sightseeing and was a great example of what other members
can use the Facebook group for if they would like to meet
people face to face and promote positivity.
positivity can come from connecting with others makes real
sense for us to promote it more which can only help stamp
out stigma which still surrounds epilepsy. If you would like
to help us please think what you could do to help raise
positive awareness and help us change more lives forever
especially for those thinking about this type of surgery.