Tiny Tickers are working hard to help give babies with serious heart conditions a better start. We want these babies to get the treatment they need as early as possible. We want them to get the right care at the right time to give them the best chance of survival and a good quality of life.
The word “START” also defines our work:
- S -Standards
- T – Training
- A – Awareness
- R – Research
- T – Together
National prenatal detection rates have doubled since Tiny Tickers was launched – and we’re proud of the impact we’ve had. But we want to do even more in each of our START areas.
Jon, Chief Executive
“For a small charity we’ve already achieved so much, and we have big ambitions to do even more. Thanks to our wonderful supporters, we’re growing – which means more training, more support for families and generally having an even bigger impact for babies with serious heart conditions.”
What we do: Tiny Tickers campaign to improve the early detection and care of heart babies
For example: We’re the patient and public representative on the committee overseeing a national piece of work to improve early detection rates; plus we’re on the NHS England clinical reference group for congenital heart disease; the steering group for the ongoing national pilot for pulse oximetry testing; and a range of other committees and boards – all making sure the patient voice is heard in decisions about how services are run.
The impact we’ve had: In summer 2015, after a long review, NHS England signed off a new set of national standards for services. We have been one of the most involved patient representatives in the review process, and now have a place on the expert committee overseeing the ongoing work the review will do, specifically on improving detection rates. Thanks in part to our lobbying, that next phase of work will look at the sonographer workforce and training needs.
The standards already approved by the NHS England board include specific improvements we have lobbied for – as a result pregnant women whose baby is suspected of having a heart defect will be seen quicker by a specialist, and will have a specially trained nurse to support when they do. Tiny Tickers are proud to have achieved real, practical improvements for families at an extremely difficult time.
For example: This year, we’re running a project to offer our specialist training to every sonographer across the Yorkshire, Humber and North Lincolnshire region, working in partnership with the Leeds Congenital Hearts service. This means around 200 sonographers will have the chance to benefit from our expert trainers, through a combination of theory lecture days and hands-on practical training in sonographers’ local units.
The impact we’ve had: Since starting training in 2002, we estimate Tiny Tickers have trained in 75% of sonography units in the UK – meaning thousands of mums-to-be each year are having 20 week scan performed by sonographers who’ve had our specialist cardiac training.
For example: Tiny Tickers’ Think Heart campaign highlights the signs that newborn babies may have a serious heart condition that hasn’t been spotted. It gives parents and health professionals easy-to-remember information about what to look for, and our awareness materials have reached thousands of people this year alone.
The impact we’ve had: Our awareness work reaches tens of thousands of people through printed materials, social media campaigns, newspaper and radio coverage and directly at events like baby shows. As a result, mums-to-be are more informed about their pregnancy scans; health professionals and new parents know the signs of undetected heart conditions; and the general public is more aware of just how common and serious heart defects can be.
We fund academic research into the causes, consequences and treatment of congenital heart defects
For example: Tiny Tickers’ founder Dr Helena Gardiner – a fetal and perinatal cardiology expert and regular reviewer for leading medical journals including The Lancet, Circulation, Heart and Obstetrics and Gynaecology – began our proud history of supporting academic research. We continue to support focused research that will increase early detection and improve outcomes for babies.
The impact we’ve had: Tiny Tickers has supported and contributed to a number of important papers and reports since our launch in 1999 – helping to contribute to professional understanding of congenital heart defects, their causes, consequences and treatment.
We support families who have a diagnosis of serious heart problems, and work with other charities and professionals to make a difference to families affected by CHD.
For example: We’re currently developing a new range of parent support materials, including information for parents who have just received a diagnosis, and for those whose babies are about to have surgery. Our parent supporters have a wealth of understanding and knowledge that we help share with families with a new diagnosis – through these materials, our social media communities and by putting families in touch with each other. Where parents-to-be need specialist support following a difficult diagnosis during pregnancy, we work with ARC (the Antenatal Results and Choices charity) to make sure they get the support they need.
The impact we’ve had: Our work in partnership with other charities includes being part of a national coalition of heart charities that has helped drive improvements to children’s heart services nationally through working with NHS leaders and government. Also, we’re founding members of a bronchiolitis coalition alongside the British Lung Foundation and TAMBA, and support the annual More Than A Cold campaign into bronchiolitis awareness.