Summer 2015

     

Help us Raise Awareness, Help us Change Lives 

Dear supporters,

As we wrap up our second June awareness month campaign we’re reflecting on some of the highlights.

The objective of this year’s campaign was to raise awareness amongst professionals and professional bodies.  In particular we aimed to change attitudes about antenatal education and the importance of discussing risk reduction with pregnant women.

The theme of the month was ‘We need to talk about CMV’. The month kicked off with a professional training day and launch of a midwife e-learning package.  We then closed the month with the publication of an expert report publishing clear calls to action to reduce the number of babies born with CMV infection each year, such as GPs and midwives discussing risk reduction with patients and local health systems ensuring they have guidelines and pathways in place for diagnosis and management of CMV in newborns.

But did it get people talking?

One of the most important tools that CMV Action have to help raise awareness is social media – Facebook and Twitter In particular.   CMV Action use Facebook and Twitter each day and we ask our followers to support us and share our posts.  Boy, did our supporters deliver this year!

We mixed up messages and content, some video, some pictures and news stories, every day delivering a new message.  Every post without fail was shared, the average reach being over 10,000 people every day.  Our expert report reached over 30,000 people when it was released on June 30th.  Our trailer video was viewed over 3,000 times and had a reach of over 14,000 people.  Important conversations were started and people did get talking about CMV.

The press coverage was all positive, including nationals and regional press.  June awareness month kicked off with a fantastic piece on BBC South East interviewing mum Vikki and her twins.

We had significant media coverage especially on NHS choices, the UK’s biggest health website and the Daily Mail – online and press.  A lively but educational debate happened on the Daily Mail Online through the comments section.  Many supporters stepped in and took up the awareness and educational baton.  Comments were sensible and well informed.  Both the Daily Mail and NHS Choices offered fantastic opportunities to reach huge audiences, especially amongst health care professionals.

Other press and online coverage included Daily Mail, Daily Express, Evening Gazette, Medical News Today, Community Practitioner, Net Doctor, Mummy Pages and the Wendover News. 

One of the highlights of the campaign has been the response from the Royal Colleges that represent some of our key professional audiences.  The Royal College of Paediatrics and Child Health released a statement of support.  The Royal College of Obstetricians and Gynacologists has commissioned a Scientific Impact Paper to improve the guidance available to professionals.  And the Royal College of Midwives has publicly set out their commitment to furthering the recommendations:

“More needs to be done to ensure midwives and others caring for women both before and during pregnancy are equipped to ensure women receive advice about those simple hygiene measures which will help to prevent this virus causing harm to babies. The RCM is committed to furthering the recommendations of this report”

Our Trustees were busy writing letters to stakeholders before and after the report was published.  As a result we have discussions set up with the Chief Medical Officer of Wales, the Chief Medical Officer of Scotland, The British Maternal and Fetal Medicine Society, the British Association of Perinatal Medicine as well as other charities such as Bliss, AVUK and the Patients Association who are interested in collaborating.

Our fabulous supporters have also been starting conversations locally.  More than 80 of you have ordered our awareness packs and handed out leaflets at surgeries, schools and hospitals.  Several people have written to their local MPs and Commissioning Groups .  You can still order a free awareness pack or contact us for a letter to send to your local health decision makers.

None of this would have been possible without the support of our fantastic fundraisers.  Thank you for helping us to get CMV on the agenda.

We’re taking a well earned break for the next few weeks but our support for families is always available on 0808 802 0030.

Have a great summer!
The CMV Action team

     

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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 unilateral hearing loss... Read more
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