Sam is a Epilepsy Hero

Selected “Epilepsy Heroes” at the Queen’s Patrons Lunch, June 2016

So, there I was (I’m the one at the back of the photo on the right in the Black specs and Purple t-shirt). It was June 2016, and I was sitting at a long picnic table, in the middle of Pal Mall the long famous street that goes from Marble Arch to Buckingham Place. The day started out wet as anything, everything and everyone was drenched (included me) due to rain showers in the morning of The Queen’s Patrons Lunch.

I arrived at 10AM outside the gates to Pal Mall on the St James’s Place side, and waited for almost an hour, or what seemed like it, along with hundreds of others. At least we were given “The Queen’s Patrons Lunch” branded Ponchos to cover our “best dress” (and yes, I still have mine). I got through the security checks, and I was in.

So why was I there? Why was I selected as a “Epilepsy Hero” ? well, one of the charities that the Queen support’s and is a patron of is Epilepsy Society ( www.epilepsysociety.org.uk/donate ), a wonderful thoughtful not for profit charity that’s been around for well over three/four decades looking after the health of people like me, who have Epilepsy and seizure disorders.

Since Epilepsy Society were given 5 tickets (a value of over £200 including the luxury M&S Hamper) to attend the Patrons Lunch, they were looking for Heroes who live with Epilepsy, or parents / caregivers or nurses and clinicians — to attend the event, to be celebrated and recognised, to give recognition to those whose life has been affected by the condition.

Earlier this year, Epilepsy Society ran a campaign to find five ‘Epilepsy Heroes’ (each ticket were sponsored by B P Collins LLP ).

Each hero along with a guest of their choice, would be able to attend this exclusive lunch. Epilepsy Society (via their website) asked our supporters to nominate their own Epilepsy hero; whether they were living with epilepsy themselves, or if they were a friend, family member, health professional, or anyone who had gone that extra mile to help or to raise Epilepsy Awareness.

The charity was overwhelmed with the response for this campaign, and were incredibly impressed with each and every nomination that was received. To read about ALL the 5 nominated, see this link : https://www.epilepsysociety.org.uk/epilepsy-heroes#.V7wkkbV97Vo

For me, I was nominated my by Specialist Epilepsy Nurse, Helen — who is based at Southmead Hospital in Bristol, South West England.

Helen says “Sam has refractory epilepsy and is currently pursuing the option of surgery in an aim to gain control of his seizures. Sam has not let his own epilepsy stop him from working hard to help others. Despite his condition, Sam offers support to people locally, helping to run the Bristol Epilepsy Social Support Group.

Sam has been a positive campaigner for highlighting the needs of people with epilepsy both locally and nationally for many years. He helps support people locally and helps me run the Bristol Epilepsy Social Support Group and much more.

I feel Sam very much deserves the recognition for all the hard work he does and being chosen to attend the patron’s lunch as an epilepsy hero is a fitting and wonderful way to show appreciation and thank him for the commitment he has shown to help improve the lives of people with epilepsy. “

Sam has also campaigned at a national level with the government and the department of health. He is involved in raising awareness of the condition by campaigning local clinical commissioning groups to stress the need for local investment in good quality services.

While supporting those affected by epilepsy in his local community, Sam is also involved with the Epilepsy Awareness Day & Expo at Disneyland Resort, California ( EADDL ) each year. The day brings together people with the condition, their families, friends and healthcare professionals. Sam shares the experiences via films and interviews he makes with people attending on the day.

A source of support and a listening ear for anyone affected by epilepsy, Sam has devoted his time to ensure that the condition is better understood and to improving the lives of people with epilepsy.”

And I said “ Being nominated as a Epilepsy Hero, to attend the Queens Patrons Lunch is a fantastic opportunity for me to attend, not only as a person with lived experience of Epilepsy, but to represent Epilepsy Society, the great charity that has helped me, as well as others with the life-long neurological condition.”

I also want to add “I want to say a massive THANK YOU to Epilepsy Society, for inviting me to the Queens Patrons lunch. It was a fantastic day, and an opportunity in meeting and talking to the other nominees and finding out about their Epilepsy. It was good to meet some of the fundraising team from the charity, as well as sharing the lunch and the experience together. I’m glad we got to ‘Speak Up for Epilepsy’ at the Queen’s Patrons Lunch.”

Watch the short film of the Queen’s Patrons Lunch filmed by Epilepsy Society. At points the music does overwhelm the interviews, but at least you do get a feel of the day, from our point of view which included a pass by, by the Queen’s sister Princess Anne, who wanted to know a bit more about the charity.

Photos from the Queen’s Lunch:

Epilepsy heros, Sam Downie, left, and Jo Hardiman with her mum, Sue.
Epilepsy hero Layla Reid with mum, Sarah and grandad, Larry.
Epilepsy hero Chrissy Thomas and husband Dave enjoy an ice cream in the rain.
Layla’s special message for Her Majesty the Queen inside a copy of Layla’s book, Epilepsy for Kids. On the right, Princess Anne talks to the crowd.

To find out more, read the post on the Epilepsy Society website here : https://www.epilepsysociety.org.uk/news/epilepsy-society-joins-queen-royal-birthday-party-15-06-2016#.V7wxQbV97Vo