Meningitis acts fast. It is currently one of the few infections that can kill an otherwise healthy person in just 24 hours.
Those affected and their families are left shell shocked, alone and struggling to understand what has happened. Over a third of those who survive the disease will be left with life altering after effects including amputations, severe scarring, deafness or neurological damage. There is no single aftercare plan for meningitis, the wide range of after effects mean that survivors of the disease often fall through the gaps of aftercare and do not receive the help and advice they require.
The detrimental impact of meningitis on body image is well documented, particularly following amputations or scaring, and is a major contributing factor to withdrawal from social contact. Feelings of isolation and loneliness affect not only the individual but also their families, many of whom become carers for a disabled child or partner, with a resulting higher incidence of relationship breakdown, depression and anxiety.
Providing support those who have experienced meningitis and/or septicaemia is at the very heart of what MRF does. We offer a lifeline through a variety of outreach, direct support and peer to peer services, which help to combat feelings of isolation and have a positive impact on mental health and well-being.
Much of our support is offered on a personal level, tailored to individual needs, with well-established programmes including a hugely valued helpline, community outreach, telephone befriending, home visits and support days such as Pushing the Boundaries.
However, we’ve found that some people are not able or willing to access our services in their current format. Some simply do not want to talk on the phone, attend an event or receive visitors in their home, while others may lack the confidence to call the helpline. These are the people, whether they be children or adults, who are most vulnerable to becoming isolated due to their experience with meningitis and/or septicaemia.
What we are doing
We are now expanding our support offering, with the introduction of Meningitis Mentors; a new online resource where users can upload, watch and comment on videos focused on sharing tips, experiences and advice for those affected by meningitis and septicaemia. This platform will provide an accessible form of support for those unable or unwilling to access our traditional services via telephone or face-to-face.
The platform will offer a way for users to connect with others by sharing their experience via videos or within commentary. Videos will cover a range of topics, such as driving with amputations, coping with the death of a loved one or living with the invisible after effects of meningitis.
Whilst targeted at those affected by meningitis, the vast majority of the topics covered will also apply to individuals seeking support following a non-meningitis related trauma or illness, leading to bereavement, limb loss, acquired deafness or cognitive impairment.
The project has been inspired by Izzy Weall, a quadruple amputee as a result of meningitis at the age of 7. Izzy has made a series of inspirational videos offering practical advice and support for coping with daily tasks and pressures. She has a large following on Youtube, with many of her videos attracting over 500,000 views.