Your voice can make a difference..
At CMV Action, we consistently hear from families who want all babies to be screened for CMV. Many parents ask why this is not already happening, often sharing the profound impact that late diagnosis has had on their children and families. Newborn screening decisions sit with the National Screening Committee, and this issue is currently under active consideration, making it a crucial moment to ensure family voices are heard.
Please take part in the consultation and share your views by Friday 6th February.
This is a vital opportunity for families’ voices to influence the decision on CMV screening.
You can access the consultation here:
https://view-health-screening-recommendations.service.gov.uk/cytomegalovirus/
What you need to do
The consultation consists of six questions (up to 500 words per question).
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The first question asks how CMV affects you, your family, and your friends. This means that not only parents, but also relatives, carers, and others who understand the impact of CMV are encouraged to respond.
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The remaining questions focus on the evidence and the report, and give you space to share your views, experiences, and suggestions.
When responding, please try to include:
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The timing of your child’s diagnosis and how this affected outcomes for your baby and your family.
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If your child was diagnosed as a newborn, explain the impact of early diagnosis, such as access to treatment, monitoring, and support.
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If diagnosis came after 21 days, describe the consequences of this delay. For example, whether diagnosis relied on the blood spot test, whether treatment was missed, or whether it was no longer an option.
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The impact of the virus itself, as well as the emotional, practical, and long-term impact of the diagnosis (or delayed diagnosis).
Personal experiences and individual stories are incredibly powerful and can make a real difference.
Finally, consider why you believe CMV screening is important and how having screening in place might have changed the outcome for your baby or child.
We’ve prepared these FAQs to support you in completing the survey and help you share your experience in a way that feels right for you.
Our team is also on hand to help if you have any questions if you require more support. Please reach out to sarahdewar@cmvaction.org.uk
We’re inviting families affected by CMV to help raise awareness by contacting their local newspapers and sharing their story.
Personal experiences are powerful and can help shine a light on the consultation, whilst also raising general public awareness of CMV, and encouraging others to get involved and have their say.
To make this easy, we’ve created a simple email template you can copy, paste, and personalise when reaching out to the press.
Your voice could make a real difference. Thank you for your support.
Background to the consultation and why your voice matters
We have met with the external reviewers to speak directly on behalf of parents and families, sharing the realities of living with CMV and the impact it has on the children and families we support. Again and again, we stressed how vital early diagnosis is, and how different outcomes can be when babies are diagnosed in time.
Despite this, the current review has concluded that the criteria for CMV screening are not yet met, stating that more evidence is needed.
This is why your voice is so important right now. Behind every statistic is a child, a family, and a story, and decision-makers need to hear those stories clearly.
We are asking parents, carers, grandparents, and friends to take part in this consultation and share the reality of how CMV has affected your family. In the last consultation in 2021/2022, only 155 families responded. Together, we can make sure that this time many more voices are heard.
CMV Action was involved in analysing the responses last time, showing just how powerful family experiences are in shaping understanding and policy. You can read what families shared and why their voices matter here:
Even if you responded before, please respond again. Your experience still matters and it may help change the future for another family.