Monthly, Drop-in and Connect Sessions are here…
A message from Debbie,
CMV Connect Project Coordinator
This update shares the work that has been ongoing, building on what families have been telling us. We’ve had our fourth meeting of the Family Advisory Panel I will tell you more about below and I’ve been having some interesting conversations with clinicians involved with cCMV to see how we can work together.
As ever, I really appreciate your continued involvement and support.
Thank you!
What’s been happening
Support Service
Some of you may know, or have even used, our Support Service – either by calling or emailing us. The Support Service has run for a number of years and is supported by volunteers who have lived experience of cCMV.
In 2025 the team handled over 60 enquiries with over 1,500 minutes of support time, with contacts ranging from parents in acute crisis just hours after a diagnosis, to families seeking community years later, to bereaved parents navigating grief. We can also seek advice and guidance from our medical advisors for more complex situations. The service is small, but the reach and the weight of what it handles is substantial.
We’ve been doing some behind the scenes work to identify exactly what type of calls we get, the best way to respond to these and developing our volunteer support material to make sure volunteers have all of the information to hand. It will make the service stronger than ever.
If you think you have may have the skills or experience to be a support volunteer, do get in touch with us.
Family Advisory Panel
We held our fourth meeting in February. During the meeting, families gave us feedback on some branding and website ideas as well as some feedback on the support service, helping us to think about what would make it approachable and what kind of information would be useful.
Families noted that diagnosis in particular can feel overwhelming, and speaking to someone knowledgeable and empathetic is particularly valuable early on. One member had used it and found it useful. But some families weren’t aware of it.
Suggestions for improvement included:
- Clarify the operating hours
- Clearly communicate response times
- Specify whether calls are answered live or returned via call-back
- Maintain written contact options (email/messaging for those not ready to speak by phone, and look at adding WhatsApp)
- Make clear the limits of support
- Ensure responses are compassionate, calm, and non-clinical
- Make sure the service is promoted well
Linking with clinicians
We’ll soon be sharing a research paper highlighting the importance of psychological care for families affected by CMV. I was fortunate to meet with some of the authors and contributors of the paper to hear about their work and findings, and share our thoughts about the experiences of the families we work alongside at CMV Action. This has helped us to think about some online wellbeing sessions – watch this space!
We also thought about how clinicians can make families aware of CMV Action as a support space and we are in the process of developing some information that Paediatric Disease clinicians will have that can be given to families.
We’ve also been liaising with doctors at Imperial College Healthcare Trust about some leaflets for children and young people they have developed to give them information about cCMV. They want to make sure they are as good as they can be and have asked us to ask the families we are in contact with. We will be sending out some surveys through our social media platforms to get you and your young people’s views on these in the next couple of weeks.
It’s really good to be ‘connecting’ with clinicians to support families on their cCMV journey.
Drop In and Connect
Join us for Drop In & Connect, our relaxed monthly drop-in session taking place on the second Tuesday of March, April and May.
These informal online sessions are a chance for families to come together in a welcoming space with no set agenda, just time to chat, catch up,share experiences, ask questions, or simply listen and connect with others who understand the CMV journey. Whether you’ve joined before or are coming along for the first time, you’ll be warmly welcomed.
We’d love to see you there for conversation, community and support.
Extra news…
Our Online training package for volunteers has been launched! ‘The Academy’ is now live for our volunteers and has some essential training (keeping people and information safe) as well as ‘Beyond the Essentials’ depending on the volunteering role.
We’ve been working on expert led online sessions on cCMV, supporting siblings and wellbeing and liaising with other organisation who can provide some session on school/ SEND challenges – more on this to come soon.
Thank You
As we move further into the year, and hopefully towards some spring weather, we want to thank you for being such an important part of the CMV Action community. Whether you’ve shared your experiences or connected with others online, your involvement helps families feel supported and less alone. We’re looking forward to continuing our work together throughout 2026 and to sharing more news, updates, and ways to get involved in the months ahead.
Online Communities
Just a reminder CMV Action also has a private Facebook group and WhatsApp community for families. These spaces offer a safe and supportive environment to ask questions, share experiences, and connect with others who understand the CMV journey. If you’re not yet a member and would like to join, we’d love to welcome you.
Share your feedback. Let us know your thoughts – we want to hear what kind of support or events would mean the most to you – drop me an email at debbierennie@cmvaction.org.uk
CMV Connect has been made possible thanks to funding from National Lottery Community Fund.