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Jane Wells, Meningitis Trust, UK
The first experience of meningitis I had ever encountered in my life was with my son Dan. I can honestly say it was the most frightening time of my life, thinking I was looking at a seriously ill child but no one was helping us. The lead up to the hospital admission was a nightmare and I thank God for my natural motherly instinct to protect my child.
The first two years of Dan's illness were a total mystery to us. We had so many unanswered questions, not least, would our son ever make a complete recovery? I felt very passionate and angry about the way this disease had affected our family and just wanted to help others who were experiencing similar situations. I wanted to alert parents to be aware that such a deadly, shocking illness could strike without warning but their instinct must guide them quickly and confidently to seek help. Some, unfortunately, are not afforded that precious time due to the speed that meningitis can strike. It is for them also that we fight.
Dan came home a shattered child. We struggled to gain any information on why he could not sit or walk unaided; why he suffered petit-mal and tinnitus which impacted on his ability to concentrate and remember. His slowness at school was ignored and I was told by one of his teachers that it could not possibly be attributed to something which happened two years previously. I fought long and hard for an acknowledgement from the medical profession that there were indeed long term after-effects of meningitis affecting behaviour and academic levels; something perhaps only a parent could at first detect, yet that same parent was classed as being over protective or too questioning.
My strength is that I am tenacious and if I believe something is wrong I will challenge the unchallenged at the highest level. I remember visiting the Department of Health in London and I argued with the then Minister of Health that cases of meningitis were drastically under notified - which meant they did not know that it was (and still is) a fairly rare disease! Sometimes our constant questioning and demand for information got us into trouble; we were not always popular. But I truly believe that our strength was that we were a small group of parents, from simple, family backgrounds, who believed strongly in justice being done - meningitis was needlessly killing our family members all for the sake of ignorance.
Therefore our primary aims were awareness, both in the public and health sector, practical support for families experiencing the aftermath of the disease, and importantly, research into facts, figures, consequences and preventative methods to help drastically reduce the number of cases of meningitis. And the Meningitis Trust was born.
As a consequence of our success in Gloucestershire the Meningitis Trust became a national charity, the primary UK provider of professional services and community based support for people affected by meningitis. It has become a leading authority on meningitis, using its expertise and knowledge to give meningitis survivors the strength to rebuild their lives. It helps around 20,000 people a year in the UK - but there are many more out there that need its support.
Looking back over the last 23 years and appropriate simile would be 'from small acorns large oak trees grow'. We have achieved our aims in awareness and research. One of the most significant points that should not be overlooked in research is that it was the Trust which brought it to the attention of pharmaceutical companies which, along with the Government, now fund the bulk of the vaccination programmes. Our initial contributions were equally as important to kick starting the vaccination programmes and we have been instrumental in the development of vaccinations for HIB, Meningococcal C, Pneumococcal and the improvement of existing vaccines.
The future still holds a challenge for the Trust in that sadly, thousands of families have been affected by this traumatic disease which has left deep psychological and physical scars. We are committed to supporting these families so that they can live a life which gives them equal opportunities and a better quality of life. Fundraising and keeping awareness up there with the rest will be particularly challenging in this post recession world.
My life is now in Africa, where I am seeing so many soul destroying cases of meningitis. Brought about by lack of awareness, unqualified doctors and ill equipped hospitals; where meningitis is often treated alongside many other illnesses. Knowing all that I have learned from the Trust, I am trying hard to make a small difference to the health professionals in my own community in Africa - here we go again!
Although I am no longer on the Trust's Board of Directors due to my life in Kenya, I am still very much involved and my passion for the Trust will never die. It has done an outstanding service to the world and I am very very proud to have been involved in that. I feel that even if I die tomorrow my life has made a difference. I thank God for the health of my children and especially for my wonderful son Daniel, without whom, maybe the Trust would never have happened.
Jane Wells
