Our new men's group is the brainchild of our supporters Augustine Joseph and Ash Parry.
Having been put in touch by Isobel, our Volunteer Manager, Ash and Augustine mentioned the invisible after-effects they both experience following meningitis.
They ended up speaking for hours on the phone and realised how powerful a group for men with an experience of meningitis could be in supporting other men who have been affected.
Augustine and Ash will be joined as co-facilitator for the group by our Community Ambassador Graeme Burridge. Graeme lost his daughter Katherine to the disease, bringing a different perspective to the group.
Always been needed
Augustine, who contracted pneumococcal meningitis in 2023 and was left with severe fatigue and mental differences, particularly with mental processing and memory, said: “A group like this has always been needed. As I look back on my three-year journey since becoming ill I know I could have done with this from day one.
“Men can find it really difficult to open up. And by the time they do, it can be too late. I don’t buy into that cliché that opening up is weak, quite the opposite in fact.”
Ash, who became ill with meningitis 16 years ago but still lives with the legacy of the disease added: “It’s amazing to be able to help people, but I recognise I may not be able to get through to everyone.
Community of experience
“I’m very open but not everybody is. It will help massively to have that community of people with the range of experience and approaches – whatever the issue there will be somebody with something similar, and probably something they’ve never told anybody previously.
“For me it was really hard when I came out of hospital. Everyone assumed I was better, but I wasn’t, and I had to find my own way of moving forward as a new dad – I never actually dealt with it at the time.
“I’m looking forward to getting this group up and running, building on this positive energy and seeing where it takes us.”
Feeling of helplessness
Their thoughts are shared by Graeme. He added: “As a bereaved father, I found it difficult to come to terms with my loss, especially the grief aspect and the feeling of helplessness.
“The loss of my daughter Katherine was made more difficult by not having anyone to share my feelings with, apart from my wife, Gail. Gail grieves differently; her emotions were totally different to mine. Apart from a couple of male friends, who I met occasionally, I had no one to talk with who fully understood the loss of a child to meningitis.
“Like many men, I turned to alcohol – the only way at that time I felt able to cope was to go to the pub and get drunk.
“To have had the opportunity to talk, empathise or cry with another male, who had experienced the same utter grief I was feeling, may have helped.”
Still trying to process it
Also joining the group is our supporter Alex Basford, whose eldest daughter Mia died of bacterial meningitis on her 20th birthday in 2023. Since then, Alex and Mia’s family and friends have channelled their energy into fundraising and raising awareness.
Alex told us: “As a parent three years later I’m still trying to process it; trying to come to terms with Mia’s death.
“We continue to have support from family and close friends, but this is predominantly female. Since Mia’s funeral there has been little real support from male friends and to this day none of them will bring up her death, how we are dealing with it or even ask how we are.
“Men don’t make other men aware of their feelings, even if they would like to share more – a support group like this will give them that safe space to show how they’re feeling.”
Range of support
The new group will offer a range of support including a WhatsApp group, one-to-one and group meetings, get togethers, walk and talks and telephone support, with a focus on mental health. Meningitis Now will apply for grants for a dedicated support worker to support the group and funding for a Men’s Weekend, similar to our well regarded Forever Weekends.
The group is open to all men aged 18 and over, whatever their experience, including:
- Men who have had the disease and are dealing with after-effects;
- Bereaved fathers or other family members;
- Men with a caring role for someone impacted by meningitis;
- Siblings aged over 18; and
- Young men who had an experience at school or university.
Our Community Support Officer Paul Blackburn will provide initial support for the group.
Become whatever it needs to be
“Let’s see how it evolves,” Augustine added. “It can become whatever it needs to be. It’s all being done out of love and care, somewhere where anyone can let it go in a safe space. I’ve no doubt that all the right things will come from this. Come and have a chat.”
The formation of the group has been welcomed by our chief executive Tom Nutt. He said: “This Men’s Group will fill a gap that currently does not exist within the charity, giving men, through a common bond, the opportunity to talk openly and honestly in a safe and confidential environment about their feelings.”
It will sit alongside our existing Facebook Peer Support group and a Facebook Bereavement Support group, which will continue.
For more information please contact:
Meningitis Now Helpline. Email: helpline@meningitisnow.org. Tel: 0808 80 10 388.
