Let’s make DLA fair for heart children

Every year thousands of babies are born in the UK with congenital heart defects. Others develop heart disease during childhood. I think most people would recognise that these children have a disability. Even once they’ve had the surgery or surgeries they need, many of these children will continue to live with the affects of their…

Help us change DLA for CHD patients

On Tuesday 29th November, we’ll be joining forces with other congenital heart charities to urge MPs to help us improve access to Disability Living Allowance (DLA) for CHD patients. The national coalition of CHD charities – which includes Tiny Tickers – believe some patients may be being turned down for DLA partly because CHD is not given a…

NHS England review of heart services

NHS England has published plans for congenital heart services in the future, following a three-year review and the development of new standards of care. You can read more about their plans here: www.england.nhs.uk/2016/07/chd-future.

How you can help future heart parents

Are you the parent of a child with a heart defect? If so, you can help us help future parents. We’ve launched a new online survey to gather advice and experiences that will help new mums and dads of babies with heart conditions. You can find out more and complete the survey by clicking here. Thank you!

Just keep swimming…

Staring at the fish-filled wallpaper in the children’s outpatients waiting room today, I was reminded of a quote from Dory in Finding Nemo (which I know shouldn’t be one of the favourite films of a man my age but it is, okay, it just is) – “When life gets you down, do you wanna know…