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Project information

Encephalitis Lifeline

500,000 people are affected by encephalitis (brain inflammation) each year. Our project is a major development of our telephone support line to incorporate a secure video call platform. We will also launch a dedicated encephalitis YouTube channel allowing story sharing & delivery of advice & help.

May 2019 - December 2019

Charity information: Encephalitis Society

Encephalitis Society logo
  • Need


    A recent YouGov poll reveals that, despite encephalitis being a potentially life-threatening and disabling condition that strikes 1 person every minute, only 20% of the population know what it is - and this can lead to delays in diagnosis. Those who do survive can struggle with the new normal that an acquired brain injury brings - loneliness, isolation, memory problems, physical, behavioural and emotional challenges and the hideous feeling that who they once were can never be recaptured.


    We will innovate the way we deliver a major part of our Support Services, using a secure video call platform for those people affected by encephalitis who need help. We will couple this by launching a moderated encephalitis, YouTube Channel where patient stories can be shared (lessening isolation and building confidence), training can be delivered (increasing knowledge and building resilience) and information can be watched repeatedly by people with memory challenges.

  • Aims

    Aim 1

    Increase the number of people we can help across the world


    » Redevelop one facet of our expert Support Service by developing a secure, online, video call platform.

    What success will look like

    Our data on the number of people supported will increase.

    Aim 2

    Extend our expert Support Service by launching a moderated & encephalitis specific YouTube channel


    » Share stories and patient narratives
    » Deliver information by medical and research experts about different facets of encephalitis, ie diagnosis/in hospital/recovery and rehab
    » Repeat broadcasts so that people affected can view as many times as their memory challenges require

    What success will look like

    YouTube data can be analysed - this shows the number of views and the length of time people watch the channel

  • Impact


    More people will be supported and they will know the person who is supporting them as they can see them.
    Sharing stories of their encephalitis journeys via YouTube lessens isolation and sharing these successes via social media increases confidence.
    People can access the YouTube channel on demand at a time convenient to them and can rewatch the content that helps them, as many times as they like.


    Unmoderated YouTube content could be a risk but we will closely moderate all content and comments.

    Consent would be sought from all participants.


    We will update donors on the progress of the campaign through our website, social media and ‘Connect’ our quarterly newsletter.

  • Budget

    Budget - Project Cost: £5,000

    Loading graph....
      Amount Heading Description
      £500 Video Conf Secure video conferencing facilities
      £4,000 Stories Filming people affected by encephalitis stories
      £500 Promotion Publication of information and campaign materials.
  • Background


    Global - managed from the Encephalitis Society's UK Office base.

    Encephalitis is indiscriminate, striking young and old alike and showing no respect for ethnicity, gender, social status or culture.


    The general public; our membership (approximately 10,000), the 500,000 individuals who are directly affected by encephalitis each year, their family, friends, carers and associated medical professionals.

  • Why Us?

    Why Us?

    We have a 25 year history of being at the forefront of the encephalitis landscape, raising awareness of the condition and supporting those affected.
    There is a wealth of expertise within the organisation and our highly experienced board of Trustees is augmented by a 15-strong Scientific Advisory Panel of global experts. We are Charity Times' Charity of the Year 2017/18

    Read more about the Charity running this project.


    Dr Ava Easton - Chief Executive

    Dr Ava Easton, a world recognised authority on encephalitis, will oversee the content of the campaign and, ultimately, sign off on all messages.

    Phillippa Chapman - Director Of Operations

    Phillippa overseas our volunteers as well as the charity's operations and governance.

    Alina Etherington - Projects And Information Coordinator

    Originally from Romania where she practiced nursing for almost 10 years, Alina will oversee all of our resources available.

    Jon Ainley

    Jon is our Support Team lead and has many years experience in supporting people affected. Jon is an encephalitis expert.