As part of our ongoing charity series, we are featuring the Encephalitis Society today. And there is a very good reason for this: February 22nd marks World Encephalitis Day!
Encephalitis is an inflammation of the brain caused by either an infection or through the immune system attacking the brain. Anyone of any age, gender or ethnicity can be affected and whilst it does have a high death rate, it can also leave survivors with an acquired brain injury and all the life changing consequences that this can bring. At PLG we have assisted people who have survived encephalitis but been left with cognitive and mobility problems which have meant that their home has needed to be adapted so we recognise the impact that this devastating condition can have.
The Encephalitis Society was founded nearly 30 years ago by a group of families affected by encephalitis and offers support to any who have been affected by encephalitis – the survivors and their families as well as the bereaved. We spoke to Dr Ava Easton, CEO of the Encephalitis Society, to find out how Covid 19 had affected them.
As with so many charities, especially smaller ones like ourselves, the pandemic posed a severe challenge to the services we could provide to people affected by encephalitis. As events were cancelled and our income fell, demand for our support service increased. But it was the real need for independent reliable information that I noticed the most.
We had lots of additional questions being asked about neurological complications of Covid 19 and increased mental health issues. Living with an acquired brain injury can be very isolating and lockdowns added to this sense of loneliness. We also became conscious that while vaccinations were welcomed, they also gave rise for some, especially the immunocompromised in our community, to more questions. And we also had questions about Long Covid to address. Demand on our support services soared and at their peak were 113% above normal so we had plenty of challenges we needed to rise to!
The answer to these challenges, which the Encephalitis Society embraced, lay in digital solutions, commencing in March 2020 with the Encephalitis Podcast which offered information and answers to concerns from a Scientific Advisory Panel. It was an immense success reaching over 14000 people. The success led to further similar initiatives which offered reassurance. But the Society were also acutely aware of the isolation many were feeling so also wanted to find a digital solution for this.
Connecting people during lockdowns was a very high priority for us. We introduced Virtual Gatherings and to complement these launched two Facebook support groups which offered support for people of differing ages as well as a Support Forum for people of all ages. These were great safe spaces for people to come together and support each other.
As with so many charities, the lack of fundraising events meant that funds were in short supply but meetings, the annual global conference, and the highly successful ‘BrainWalk’ were all moved online and a concerted effort was made to increase digital content. We boosted the content that we had on YouTube so that we actually managed to increase our viewers fivefold in 2020 compared to 2019. The virtual conferences have been a resounding success reaching people around the world. In fact, going forward, we will be holding events in a hybrid way to facilitate those who wish to meet in-person, but also to ensure that delegates can attend virtually, from wherever they live in the world, should they wish.
You can join the next event on April 25th entitled, ‘My Brain and Me’ in person or online, or join the brilliant BrainWalk by going to Encephalitis Society (https://www.encephalitis.info/) . As with so many crises, some good has come out it the pandemic and the Encephalitis Society are embracing a new digital presence which makes them so much more accessible the world over. And at no time will this be better demonstrated than on February 22nd, “ World Encephalitis Day! Look out for more details at www.worldencephalitisday.org (https://www.encephalitis.info/pages/category/wed) or check out the Society’s social media #encephalitis
What is Encephalitis?
Encephalitis is an inflammation of the brain. It is caused either by an infection invading the brain (infectious encephalitis) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis).