Update on the proposed decision to destroy newborn bloodspot cards after 5 years

     

Many thanks if you took the time to complete our survey.  The decision has been put 'on hold' for now while the evidence is reviewed - we will keep you informed of the final decision.

 

Has your child's or young person's newborn bloodspot / heelprick card / Guthrie card been tested for cytomegalovirus (CMV) at age 3 years and older? If so, we would really appreciate your help with a short questionnaire...

A new policy is proposed to destroy all newborn bloodspots over age 5 years in the UK. We understand that reasons are financial rather than medical. Following an appeal by patients and doctors, Public Health England have now asked for evidence that the bloodspots are helpful to patients.

The bloodspot (Guthrie card) test is the only way of diagnosing congenital cytomegalovirus (CMV) in children and young people over 3 weeks of age.
We would be very grateful for your experiences and views on this issue as part of the consultation.

The information gathered will be anonymous and shared with Public Health England and other stakeholders involved in the consultation. Please enter this link https://www.surveymonkey.co.uk/r/NYKW3Z6 in your web browser to view the questionnaire. Please complete the survey by Monday 18th June. Thank you very much for your help.'

     

Our Stories

2015 We found out in January 2017 just after Gabe’s first birthday that he had Congenital CMV.  I had a great pregnancy and a delivery with no problems. However he was born with... Read more
February 2014 Our family consists of my husband, Yoav, and our two daughters, Maya and Leila. Our youngest daughter, Leila, was born with congenital cytomegalovirus (cCMV) and has... Read more

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