PROVIDING SUPPORT AND RESPITE
We are dedicated to providing support and respite to families with children and young people affected by epilepsy.
HOPE London was founded in 2012 by Scott Liddle a parent of a child with complex epilepsy. This is his story
I set up HOPE London as my wife and I were struggling with our son’s seizures. We were feeling extremely isolated and overwhelmed. We knew that there must be families in a similar situation to us but where were they? We felt we would benefit from meeting other families that had a child with severe epilepsy.
Our friends were extremely sympathetic but they did not understand how we were really feeling. When I contacted all the national epilepsy charities I was amazed to find that there was no support group for families affected by epilepsy on London. When campaigning for an epilepsy nurse at Barnet and Chase Farm hospital I had garnered quite a lot of interest for a support group from parents who supported the campaign, so knew that there was a need for HOPE London.
I am pleased to say that HOPE London is now well established and we get new families attending all the time. HOPE London to me is a haven for children with epilepsy and their siblings to enjoy themselves and meet other kids in a similar situation. Hope is a place without barriers, where children, parents and carers can be themselves and know that the person they are talking to understands without judgment.
Founder of HOPE London
WHAT WE DO
HOPE ANTI- SUFFOCATION PILLOW PROJECT
Our HOPE sessions provides a safe space for families to socialise, reduce isolation, build relationships, share information, access support and guidance and most importantly for children to have some fun! We hold our HOPE sessions once a month at Oakleigh school in North London which has fantastic facilities both indoor and outdoors. To find out more about our HOPE sessions,
SUPPORT & INFORMATION
During the HOPE sessions our team are on hand to offer advice and support as well as a bit of respite so you can take some time to talk to other parents or visit our information table which has all the up to date literature on paediatric epilepsy. In addition to the HOPE sessions, we organise regular online webinars/zoom calls with experts, we have regular email communication with our HOPE families and you can follow us on our social media channels to keep up to date with HOPE activities as well as links to useful articles and sites.
Through generous donations we are able to organise fantastic day trips for our HOPE families at key points during the year. We know that outings can sometimes be stressful or overwhelming for our children and families, so we work closely with the venues to make sure that the visit is as seamless as possible. So far we have been lucky enough to visit Legoland Windsor, London Zoo, Diggerland, The Science museum.
Go to our Gallery to see some of the fun we've had.
MEET THE TEAM
It is important for us to have trustees and advisors who can bring different experiences to the table and help support the charity. Click on the photos below for our trustees story on what HOPE London means to them and their motivations for becoming part of the team.
“I was so relieved when I found HOPE and talking with the Team helped me so much. Your kindness, advice and generosity, sending us an Anti- Suffocation Pillow when I didn't even know my son needed one, overwhelmed me. I cried the day we received it as the gesture and your knowledge just brought so much comfort and relief. To know that someone knew what we were going through was a godsend.
I am so grateful for all the information shared with me, and talking with the Team at the first HOPE session we attended, brought such clarity to the situation. We walked out of the appointment where my son got his diagnosis and it felt like free fall. We weren't signposted to anywhere like HOPE, we were merely given a booklet. When receiving any information I think the mind ricochets to all the possible scenarios ahead some more plausible than others.
I threw myself into learning as much as I could about epilepsy while still slightly being in denial about it all, by telling my self that our situation didn't seem that bad in comparison to others. I remember attending one HOPE session and one of the Team said to me, “Why compare yourself? “ Your son has epilepsy and you have to watch your little boy have seizures, so it's ok to not feel great! Of course they were right, and allowing myself to think that, helped us as a family to move forward. Epilepsy is a part of my sons life, but it doesn't define him.
Anyhow, I just wanted to make everyone aware of how grateful I am that HOPE exists, and for all the wonderful people who are involved.”
Testimonial from a HOPE Parent