The Encephalitis Society
Submitted by: Dr Ava Easton
Published online: 21/2/17
The Encephalitis Society began life in 1994 when it became clear there was little to no information or support for people affected by encephalitis and their families. Today The Society has the vision:
To live in a world where Encephalitis is as rare as it possibly can be given its eradication is unlikely, and that those affected and their families, have access to early diagnosis, excel- lent management of their condition, timely access to rehabilitation and other forms of social support.
Its primary aim is to ‘Improve the quality of life of all people affected by encephalitis’, and The Society achieves this in three primary ways:
- Supporting adults and children affected by Encephalitis, their families and carers by providing advice and evidence-based information and working at a national and international level to improve services.
- Raising awareness about the condition and its subsequent problems among relevant professionals, statutory agencies and the general public.
- Conducting research and work in part- nership with other researchers and their establishments.
Encephalitis is inflammation of the brain. The inflammation is caused either by an infection invading the brain (infectious); or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis). Encephalitis is a thief, one that has quietly been at work for hundreds of years, robbing families of their loved ones, and even in those families where the person survives, it often robs them of the person they once knew. Encephalitis steals their capacity to remember as well as their personalities and the types of abilities we all generally take for granted: concentration, attention, thinking, judgement, inhibition. For many there are additional outcomes such as epilepsy and levels of fatigue so great that returning to work or education are mere pipe dreams. This is of course, where the person survives, many don’t. For many years statistics around incidence were scarce to non-existent and encephalitis was side-lined into the silo of ‘rare disease’. However due to great work conducted by many committed researchers and their insti- tutions over the last decade we now know there are around 6000 people diagnosed with encephalitis in the United Kingdom alone 1 each year. That’s 16 people every day. The authors suggest this may be an underestimate. Not only that but it is thought that, and again this is an underestimate, that encephalitis is costing the NHS around £40 million a year. A gure that does not include the costs of rehabilitation, long-term care, and the loss to the economy from those of working-age unable to return to work.
Therefore encephalitis has a higher incidence than motor neurone disease and certain forms of meningitis.2 Yet, despite encephalitis being more common, these conditions continue to receive a much higher clinical and public profile. Invariably people have not heard of Encephalitis unless it has happened to them or they are caring for a survivor.
Support and Information
Support and information for survivors and family members is critical. Encephalitis is a complex condition to diagnose and manage. Therefore a lot of the information surrounding it is often complex for the uninitiated. The Society takes this information and restructures it in ways that are meaningful for those new to the condition. Information consists of factsheets, newsletters, and guides for adults and families. All the information provided is evidence-based, peer-reviewed and accredited by NHS England. Therefore patients and professionals alike can be assured about the reliability of the material. The Society also provides direct support via phone, email, skype, and chat online. Other services include connecting people in a similar situation, and a burgeoning global network of volunteers. There are also moves afoot to provide more long-term and social support to patients in evolving encephalitis clinics in Oxford and London.
More recently The Society has launched The Encephalitis Society Neuropsychology Service. This operates in the knowledge that neuropsychology is perhaps the primary intervention that, if a person survives, can help support The Society’s primary aim of improving people’s quality of life. The service is operated by a consultant Neuropsychologist and is not established to duplicate the work of the many excellent services around the country. The service is there primarily to pick up people in areas where a neuropsychology service does not exist, and also in areas where waiting lists are detrimental to maximising a person’s potential recovery and rehabilitation (www.encephalitis.info/support/neuropsychology-service).
The Society’s primary awareness drive is World Encephalitis Day on 22nd February each year (www.worldencephalitisday.org). This global day was launched in 2014 and to date has reached more than 20 million people since its inception. 2017 sees landmark buildings and businesses around the world illuminating in red, in order to drive awareness about the condition, through digital and social media channels. There are lots of other ways each year for people to get involved by engaging with their #RED4WED and #ShowYouKnow campaigns as part of the day’s activities.
The Society is involved with a plethora of research studies including two randomised control trials in Oxford and Liverpool. The Society provides a substantial amount of information for professionals each year including an ‘Advances in Research’ guide which acts as an annual archive of the year’s most prom-inent research into the condition. In addition there are a range of initiatives engaging with junior doctors and early years’ researchers such as essay prizes and travel bursaries. The Society also contributes to research financially and has just launch a co-funded PhD fellowship with The University Liverpool. There is also a popular annual conference held in December in London each year and which brings interested professionals up to speed with the latest in the condition.
The Society strives hard to meet its aims and objectives. They achieve a huge amount with few resources, a small team, and with the voluntary contributions of its Board of Trustees and Scientific Advisory Panel.
- Granerod J, Cousens S, Davies NW, Crowcroft NS, Thomas SL. New estimates of incidence of encephalitis in England. Emerging Infectious Disease 2013;19(9).
- Easton, A. Life After Encephalitis: A narrative approach (2016). Routledge. Oxon