Meningitis Now Community Support Officers report August 2023

Community Support Officers (CSOs) are here for anyone who has been affected by meningitis, offering a listening ear and a wealth of knowledge and experience. Whatever people’s experience of meningitis, CSOs can offer a range of support for as long as it’s needed, including:

• Providing emotional support to help people come to terms with the trauma meningitis causes, and with the ways meningitis changes lives

• Answering questions about meningitis and its after-effects

• Referring to other organisations who can help

• Helping people access financial support, including through Meningitis Now’s Rebuilding Futures Fund

• Support to help schools understand how meningitis can affect learning and wellbeing

• Support to help employers understand how meningitis can affect your ability to work.

There are four CSOs who each cover an area of the UK and they support people of all ages and experiences. They provide a lot of support through home visits but also keep in touch via phone and email. Their role also covers organising support events and moderating peer support groups.

The evaluation and evidence for this report

Meningitis Now commissioned Chrysalis Research to carry out independent research, so we could understand more about the impact of our CSOs’ work.

The report uses different types of evidence, including:

• An online survey completed by 94 people who have been supported by CSOs

• Interviews with 10 people who received CSO support

• Interviews with Meningitis Now staff

“I think what categorises the CSO role is the breadth of things we do. It would be very difficult to give you a typical day. Because there never are typical days. Everything’s different depending on what’s going on and the one-to-one support that we offer.”

Meningitis Now CSO

CSO activity at a glance in 2021-22

• 126 new people referred for support – 92 came via the nurse-led Helpline

• 28 home visits, although 26 of these were between October 2021 and March 2022 due to lockdown

• 643 support phone calls

• 2,569 one-to-one emails or text messages

• An average of 207 active cases per quarter

What do Community Support Officers do?

90%

were very positive about the support received from CSOs

90%

said CSO support was excellent or very good

80%

people described their CSO as being understanding, positive, professional and knowledgeable

“Having a trusted person to talk to is priceless. My CSO is like my very own security blanket. I always feel more assured after our meetings.”

Supporter who has had meningitis

Our research shows that feedback on our CSOs is overwhelmingly positive.

Home visits were found to be particularly valuable. People can gain a lot of comfort and feel more able to open up about their experience when they are in their own home.

Home visits also give CSOs the opportunity to engage with people who might struggle with remote contact, such as video or phone calls. At the same time, our evidence was clear - whilst home visits can add real value to people in some circumstances, they are not needed or wanted in every case.

“For me personally it’s the home visits. To have somebody just come and sit and listen to you is just priceless, it’s enormous – especially because she came here in the privacy of my home. Those visits have been the most valuable to me. When I speak about my son and I speak about how I feel I want it to be face-to-face.”

Supporter who lost a loved one to meningitis

90%

said support from their CSO improved at least one aspect of their mental & emotional wellbeing

This included reducing feelings of isolation, improving people’s confidence and helping them become better connected, heard and understood. It was striking how many people described their CSO having helped them through a dark time in their lives and that they did not know how they would have coped without this support.

CSOs also help people access funding, treatment, therapies or equipment which can improve their quality of life.

One bereaved father said he was not offered support from any other organisation (including the NHS) and the support he has received from Meningitis Now has been crucial in helping him and his wife cope with their experience.

“I had terrible, terrible feelings of guilt that I didn’t get him to the hospital soon enough, and it was debilitating really. The CSO was the only person that could get through, so that I understood that it wasn’t my fault. I can’t overstate how much she was fundamental to helping me to get through those feelings that were crushing, they were crushing me. She’s just been such an enormous, enormous help.” Supporter who lost a loved one to meningitis

“She is such a unique person - her listening skills, her empathy and understanding. She is simply able to hear and allow your grief. This sounds like it’s not difficult but believe me it is hard to listen to someone else’s pain, especially when it is the pain of losing your child. I cannot thank my CSO enough for the support she has given me since my child died of meningitis.

Supporter who lost a loved one to meningitis

Claire and Abigail’s story

“Abigail contracted Group B Strep meningitis at birth, leading to a severe brain injury that means she is disabled. I contacted Meningitis Now when Abigail was four months old and shortly afterwards Alison introduced herself as the Community Support Officer for our region. We would have been lost without her!

Alison opened up our world to opportunities, support and was a much needed lifeline.

She offered our family a chance to have a normal life in the midst of trauma and hardship. Alison always checks in to see how we are doing and I know I can really chat to her about it. Alison is always contactable for any support. She goes above and beyond to help. Alison arranges Family Day Support Events so I can meet other families in similar situations. I am so very grateful for this support and I know we would not be the family we are today without it.”

90%

said their CSO helped them improve their knowledge about meningitis, its causes, after-effects and how to manage these

80%

said they felt better heard and understood

80%

were more aware of the support available to them because of CSO support

Abigail and Alison

“The fact that they know so much about meningitis – all the different types, about all the vaccines that are available…you know what Meningitis Now say is fact, that’s your gold standard, that’s where you’re going to get all the information.”

Supporter who lost a loved one to meningitis

Conclusions and recommendations

Our analysis shows that the CSO service is effective and well received by the people it supports. As such, our priorities are to retain the current level of service and to provide the support, training and development CSOs need to perform their vital role.

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.

To find out more about how Meningitis Now can help you, including support from a CSO, contact our nurse-led Helpline:

Call: 0808 80 10 388 (9am-4pm Monday - Thursday and 9am-1pm Friday)

Or email: helpline@meningitisnow.org

Ways we could improve our CSO service include:

• Monitoring whether the CSO support reaches people of all backgrounds

• Ensuring 100% consistency of people’s experience of the service

• Making sure that CSO support is as effective for people who have had meningitis themselves, compared to people whose loved ones have contracted the disease.

“I don’t know where we would be without Meningitis Now because there was no support anywhere else. They’ve just been 100%.”