2019 - My Brain & Medicine
My Brain and Medicine is an annual event we hold where attendees can listen to experts speak about different aspects of the condition with our members also sharing their personal experiences.
It is also an opportunity to meet other individuals and families who have been affected by encephalitis and to honour health professionals and organisations in our Excellence in Encephalitis Healthcare awards.
One such award was presented to Chris Salter who was honoured with the Team Encephalitis Long Standing Volunteer Award for the many years she has devoted to speaking about encephalitis and ensuring the information resources that many of you have relied upon are accurate and provide the information you need.
There were stands from Moore Blatch solicitors, Leigh Day solicitors, Oxford Autoimmune Neurology Group, PharmaDoctor, and Bugged Off! which included an exhibit of live mosquitoes as part of its travel health campaign.
This year’s event – at the Royal Society of Medicine on April 29 – welcomed around 120 people from all over the U.K. and Ireland.
It was also the first Encephalitis International event for Pam Gourley, our Supporter Care Coordinator, who has written about her experiences:
I wasn’t sure what to expect from my first My Brain and Medicine event.
I have been with Encephalitis International since November and in the past five months as the Supporter Care Coordinator (where has the time gone?) I have spoken to lots of members and also worked on World Encephalitis Day (now that was a baptism of fire!).
But My Brain and Medicine was the first time I got to see first-hand those with lived experience getting the opportunity to speak to other members, as well as hear insights from researchers and doctors.
It also meant getting to speak to members face-to-face and put names to faces to those I haven’t had the opportunity to meet yet, as well as catch up with those I have, such as the lovely Paul Wicks, our photographer on the day.
Highlights from the day? So many!
What really resonated with me was listening to members tell me how events like My Brain and Medicine are so important to them “because I thought was the only one with encephalitis.”
I was told it would at times be an emotional day and listening to the stories of members like Sue Overton and Liz Bland and the journeys they have gone on certainly affected me. They were so inspirational and it was great to look around the auditorium and see other people really relating to what Sue and Liz said.
I am admittedly an emotional person at the best of times and again I had a lump in my throat watching all the Excellence in Encephalitis HealthCare awards being handed out. One presentation in particular stood out to me and that was Hayleigh Wellard’s nomination of the Royal Hospital for Neuro-Disability in Putney. Sara, who received the award for the hospital, was part of the team that helped Hayleigh recover from encephalitis and it was obvious to see the two of them had an incredible bond. That is definitely what health care is all about!
Overall, my first Encephalitis International event, was a positive and emotional – there’s that word again! – day for me personally. I can’t wait until the next one!
Photographs from the day were kindly taken by Paul Wicks, of Blind Luck Photography.
Click on the photos to see more images
Exceptional Service Award winners
Konekt Limited (nominated by Geoff Martin)
Geoff wrote: “Konekt Limited provided the Best Graduated Return to Work Plan so I could come back to work close to my pre-illness capacity. Our CEO (and my manager) has a philosophy for all our staff that work is good for humans, and provides purpose, meaning, and economic wellbeing, and productivity.
Without a very insightful manager, I could never be where I am today. I don’t take this for granted and wish to call out and thank Konekt Limited, (and CEO Damian Banks) for the remarkable support of an encephalitis survivor.”
Bromsgrove Headway (nominated by Helen Stone)
Helen wrote: “My husband Marc suffered viral encephalitis in April 2018 resulting in complete memory loss. Bromsgrove Headway set up a support group for people with head injuries of all types together with their families to meet once a month. It is such a positive atmosphere and the staff go out of their way to support people with a massive range of abilities. It was fantastic to be in a room where Marc felt normal and people understood what he was going through without him having to explain. Just as important to us was the support they offered me and my young sons to cope with the changes encephalitis bought into our lives.”
Liz Stapleton, of St Vincent University Hospital, Dublin (nominated by Hannah Farrell)
Hannah wrote: “I would love to nominate one of the amazing carers that looked after me for the four months I was in hospital. There are so many little things Liz did for me to make my time in hospital less scary. I look back at my time in hospital and despite being so sick and losing everything I once had, I look back at all the times I cried and Liz and everyone in St. Vincents Ward would turn my tears of sadness into tears of laughter every day!”
Laura Bell and Abby McLean, Bransty Primary School (nominated Vicki Shearsby)
Vicki wrote: “Laura is the SENCo at Bransty Primary School and Abby is my son’s one-to-one at the school. Jack suffered from Autoimmune Encephalitis when he was six years-old. He is now 11. Without the huge input into Jack’s provisions and day-to-day life, he would’ve failed at school. He suffers from very frequent seizures of both the epileptic and non-epileptic type and these have been dealt with phenomenally by Jack, Laura and Abby. Neither of these two amazing women have ever let him fall behind. They take care of him as if he was their own. What more could a mum ask for.”
Royal Hospital for Neuro-Disability, Putney – Representative Sara Cole (nominated Hayleigh Wellard)
Hayleigh wrote: “This was the last hospital I stayed at during my 11 months in hospital – it’s where I learnt all my mobility skills from eating to walking. The staff there became like family and worked wonders in getting me better! They never gave up on me, and for that I will be forever thankful – I know it’s their job but they never made me feel like a patient or an outcast. I felt like family and I am forever grateful for everything they have done and all the hard work from my speech therapist to my physical therapist – each one of them played a major part in my recovery.”
York House Brain Injury Rehabilitation Trust (nominated Rosemary Broadley)
Rosemary wrote: “My husband has been in their care for nine years. He was absolutely manic when he arrived, trying to escape, jump out of windows and so on. After all this time, thanks to one-to-one support, caring staff and repetition, he is now in a regular routine. He has severe memory loss but the repetition provided by staff over the many years has worked wonders. They also bring him home and collect him once a fortnight – a 200 mile round trip! I strongly recommend them and will always be truly grateful for their care and support.”
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