Four incredible CSOs cover the whole of the UK to offer solace, a listening ear, information and support to people who have had meningitis and the people who love them.
Alison Yelland covers Scotland and Northern Ireland, Gagan Taylor covers the South East, East Midlands and East Anglia, Christine Mather covers the North of England and North Wales and Esme Lee covers West Midlands, South Wales and the South West of England.
The free service – and the impact it has on people who have been affected by meningitis – deserves recognition, which is why we commissioned an independent report to give us the data behind the stories we hear from people about how their CSO helped them.
Amongst many other things, CSOs visit people in their own homes to offer personalised, bespoke support. It takes a special set of skills to create a safe space for people to open up about their needs.
The new report shows that our CSOs’ ability to listen, empathise, offer non-judgmental support and refer people to essential services makes a difference to people’s lives every day.
A survey was taken of 94 people who have received CSO support, and 10 in depth interviews were conducted to gather information about the most impactful aspects of the CSO service.
The results show that CSO support helps to improve mental and emotional wellbeing, especially around reducing isolation, improving people’s confidence and helping them become better connected. Many respondents described how they don’t know what they’d have done without support from their CSO.
In their work, CSOs support babies, children, young people and adults, including older people. Their remit is incredibly varied, including group work and family events, and their ability to adapt to the many different personal circumstances of people with an experience of meningitis is what sets them apart.
We caught up with two families whose lives have been impacted significantly by support from their CSO.
Claire Brosnahan, from Northern Ireland, gave birth to Abigail in 2019. At only a few hours old it became clear that Abigail was very unwell having contracted Group B Strep meningitis at birth. Abigail is now four and a half years old and has complex needs as a result of an acquired brain injury due to meningitis.
Alison Yelland, our CSO who covers Scotland and North Ireland, met the family when Abigail was five months old.
Claire says, “Abigail was born in January 2019. I was induced at 39 weeks and it was my first pregnancy. We left the post-natal ward the following day and arrived home. After a few hours we knew Abigail was not well and we drove her to A&E.
“She was intubated, put on life support and transferred to PICU in the Royal Hospital in Belfast. We were told she was gravely sick after contracting Group B Strep meningitis and sepsis from the birth.
“She had suffered a horrific brain injury from meningitis, seizures and lack of oxygen. This means that Abigail is severely disabled.
“It was such a tough time so we needed all the support we could get. I contacted Meningitis Now in May 2019 and shortly afterwards Alison contacted me to introduce herself as the representative CSO for our region.
“Four years later I know we would have been lost without her!
“Alison opened up our world to opportunities, support and a much-needed lifeline. She offered our family a chance to have a normal life in the midst of trauma and hardship.
“Life has its ups and downs due to Abigail's health complexities. No matter what, Alison always checks in to see how we are doing and I know I can really chat to her about it.
“Alison is contactable for any support, she goes above and beyond to help. Alison also arranges Family Days. I met other families in similar situations, a lot of whom I still meet with on a regular basis.
“The support events enabled me to have a wider network of support.
“I am so very grateful for this and I know we would not be the family we are today without it.
Our second story comes from Lauren Fenwick, from North Yorkshire, whose one-year-old Nellie sadly lost her life to meningitis in June 2021.
“The first visit we had from Christine was not long after we lost Nellie. Looking back now that visit was so vital for myself and my family in understanding the disease, we had so many unanswered questions that we needed help with.
“We needed to process why it could have happened to our daughter, what had we done wrong. We had so much guilt and anger and Christine helped us to process these feelings and realise that meningitis is a disease that can happen to anyone’s child.
“In those early days it was so important we knew more about meningitis so we could start the grieving process for Nellie.
“Christine has been with us every step of the way, from very soon after we lost Nellie to still supporting us now and I hope in the future too. I don’t know how families manage without the support that Meningitis Now offer.
Love and support
“Christine invited us to a Forever Weekend not long after we lost Nellie where we felt the love and support from the charity and, most importantly, from other bereaved parents. They wrapped their arms around us and allowed us to grieve in our own way. I was so glad Christine asked us to join in on the weekend.
“Helping us to pay for Nellie’s funeral was such a massive help to us - we are a young family and we never expected to have to pay for our daughter’s funeral, who does? The financial support took pressure off us, which I am forever grateful for.
“We are now applying for help via the Rebuilding Futures Fund to get Nellie a headstone - we have not felt able to do this till now, but the time is now right. Christine has encouraged us to apply, and the process is so simple in what could be a really hard thing to do.
“Even now, Christine is with us - always there to listen, never judging. We always look forward to her visits, we have cried and laughed together. We recently had Nellie’s inquest. Christine’s support was so helpful to us at this time - she told us what to expect, gave us advice on how to get through the difficult days that did lie ahead in this process and arranged advice for us through one of Meningitis Now Legal Partners. We did get through the daunting experience and got answers for our daughter. Christine’s support really did help us deal with this. Christine has been such a help to us, always understanding, never judging, just always there.”
Through stories like Lauren’s and Claire’s, as well as the new CSO report conducted by Chrysalis, we can shed more light on the incredible work our Community Support Officers do every day.
90% of respondents to the report survey said that CSO support had improved at least one aspect of their wellbeing, as well as improving their knowledge about meningitis. We are proud to provide such an invaluable service. Thank you to St. James’s Place Charitable Foundation for kindly providing a grant to commission this report.
As a centre of expertise for aftercare and support, we understand how tough life after meningitis can be. We’re here to support everyone in the UK who’s been affected by meningitis. If you need support having experienced meningitis, please don’t hesitate to call our nurse-led Helpline on 0808 80 10 388 or email email@example.com.