By Jon Arnold | Chief Executive
Our work to improve the detection, diagnosis and care of babies with congenital heart defects in the UK continues.
We are continuing our core work on training sonographers in NHS hospitals in the UK, with most recently training being provided in the north west of England.
We are continuing to play a key role in influencing NHS England’s new review into congenital cardiac services in England, including as part of the patient and public engagement group alongside other relevant national and regional charities and support groups. We are delighted that NHS England have recognised the need to improve prenatal and newborn detection rates as a one of the six objective of the new review, and we will be part of a working party to explore the issue in more depth.
We see this new review as a superb opportunity to make a real difference to detection rates. For example, we have been calling for a national database of screening outcomes (currently only half the UK is monitored and that is across a number of regional registers). A database of this type would enable targeted training where it is needed the most. At the latest meeting with the NHS England review team, they intimated that the review was in favour of just such a database.
We are developing projects further training initiatives, and an awareness campaign for mums-to-be.
We continue to be moved and inspired by the experiences of CHD that our supporters share with us, and by the phenomenal fundraising efforts of many supporters. We are developing our range of challenge events – from British 10k and Great North Run places to the Big Heart Bike Ride in India planned for 2015.
In our last report we mentioned fundraiser Ed White, who is taking on the Marathon des Sables – the world’s toughest footrace over six days across the Sahara desert – on our behalf. Ed is now well into his training, with the event fast approaching in April. We wish him all the best and will report back on his efforts!
Please feel free to follow us on Facebook and Twitter (@tinytickers) or via our website – www.tinytickers.org – and to give us feedback on info@tinytickers.org. We’re only able to do this work because of the generosity of our supporters, so thank you.
Many thanks for your support,
Jon
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