"I sat and wrote a letter to a mother of two young boys who lived nearby - Diana, Princess of Wales."
Co-founder Sue recently spoke at our remembrance garden party about her memories of the early days of Meningitis Now.
Her speech reflected on her personal experience of meningitis, her memories of co-founding Meningitis Now and why she remains dedicated to supporting the charity.
“I am glad to be here today at this lovely place of reflection. Like all of you I am experiencing many different emotions today – sadness, frustration, acceptance and hope. Hope is sometimes all that we have to cling on to.
“Something that I know is that everyone here today has a special connection. I will not mince my words – we are all connected BY meningitis. Meningitis is truly horrible, we are, though, all connected THROUGH something good and positive and that is Meningitis Now.
“Meningitis Now support all of us and enables us to support each other.
Old original
“Now perhaps I should tell you a little about myself. I am Sue, Sue Neale – mother, grandmother, and I have spent most of my life in the valleys and hills of Stroud. I am also a founding member of Meningitis Now so perhaps I should call myself an ‘old original.’
“Meningitis has always been in my life. I remember from when I was young, perhaps 4-5 years old, the hushed voices of my parents and grandparents, the tears of my aunt and uncle. To me it felt rather like a monster in the background. Something disturbing and frightening. By the time I was 7-years-old I understood that two of my cousins had died after contracting meningitis, both were two-years-old.
“The years went by – I went to university, I married, I began my career as a teacher, our daughter Rachel was born and then our son Adam. We were content, and simply getting on with our lives.
“Then meningitis struck our family again. Another two-year-old boy – our son, Adam.
Critically ill
“Adam was critically ill for several weeks suffering with meningococcal meningitis Group B and meningococcal septicaemia.
“I was told by Adam’s doctor that we should stay hopeful. I was too frightened to hope because if I was hopeful and lost him, I felt that would be worse. He told me to hold on to hope because that’s the only way you can get through.
“Against tremendous odds, Adam survived. When we brought him home to recover we believed the nightmare had ended. We had no idea that in fact Adam was to be the first case in the Stroud outbreak of meningitis in 1986. We could never have believed there would be 64 more cases, sadly including two deaths.
“Cases spread along the Stroud valleys. It attracted huge media attention, some of which was helpful but much of which was just sensationalist. I clearly remember reading the headlines proclaiming “Princess Anne lives in death valley.”
Rumours spread
“Rumours spread causing even more fear, Perhaps it was locally made ice cream, maybe it was the pork pies, produced by a local company. It must have been the local swimming pool.
“Answers were desperately needed but who could be asked? How could the people of Stroud find out what was happening and why?
“Thankfully two members of Stroud District Council called a public meeting. It was packed! The meeting gave the chance for questions to be raised – but there were still no answers.
“A small group (8-9 people) decided to try and support each other. Each of the group had a family member, who had suffered meningitis in the outbreak. We met in our own homes or in the backroom of a Stonehouse pub.
“We decided that we would have to try and find some answers on our own. We became the Stroud Meningitis Support Group. The first donation we received we tried to return! When this didn’t work, we realised we would need charitable status.
“We became the Stroud Meningitis Trust in 1985. We had converted a local cottage into an office and we had our first two members of staff. This cottage is on the same site as the current Meningitis Now HQ.
Support groups
“In 1986 we changed our name to The National Meningitis Trust and we had support groups forming across the UK. At this stage I was the Vice Chairman of Trustees.
“By 1989 we had more staff and were raising more funds. We were producing awareness materials, were fundraising research into meningitis and responding to the need for support for families and individuals suffering after-effects of meningitis.
“Still, though, we knew we were regarded by many politicians and civil servants as merely well intentioned amateurs. We desperately needed credibility.
One night, unable to sleep, I sat and wrote a letter to a mother of two young boys who lived nearby. I wrote this as Chairman of The National Meningitis Trust but more importantly I wrote it as a mother of a young child who had suffered from the illness.
“I asked if she could help us. The next day I took the letter to Jane Wells (co-founder) who duly typed it up properly. We then posted it to the mother in question – H.R.H Diana, Princess of Wales.
Princess Diana
“The reply we received astounded us all. Princess Diana offered to take up the active role of President of The National Meningitis Trust. This was THE turning point.
“We now had total credibility. Our awareness campaign grew exponentially. Funding grew. We were able to take on more research commitments, we were able to help so many more people. We saved more lives and rebuilt more futures.
“For years hope sustained us as we formed this charity. It sustained me as a mother and as Chairman. I am more hopeful today than I have ever been. It is 40 years on and we have an incredible team at Fern House HQ of Trustees, Patrons, Ambassadors, staff members, volunteers and supporters.
“I know that this charity at the heart of Stroud is in safe hands.
“Today, as I reflect on all the charity has done and will go on to do in the future I find, for me, there is meningitis then…which was purely fear and despair…and there is Meningitis now.
“The situation of today – meningitis still causes fear, despair and grief, but there is something good, positive and tangible. There is Meningitis Now, the charity which embodies hope.
