NHS England’s Congenital Cardiac Consultation

We would just like to remind you to take part in the  NHS England congenital cardiac consultation. Having agreed a new set of Standards, which aim to raise the standards of treatment and care across the country,  NHS England have suggested some changes to the service to ensure that the new Standards can be met. … Continued

Children’s Heart Study

The Great Ormond Street team have sent through some detail on their progress with a new study that they are conducting in partnership with many of the other centers on the impact of cardiac surgery. We thoughts that you might like to see their recent patient and parent newsletter. Children’s Heart Study Newsletter Issue 2_FINAL

News from the Department of Work and Pensions.

Many of you know that a number of congenital cardiac charities have been working together to get the Department of Work and Pensions to re-introduce information on childhood heart disease in the DLA assessors guidance. Today we have had a letter from the DWP to say that the information will be introduced in February/March, in … Continued

Keeping children’s heart services safe.

It is always so sad to hear that any child has received poor treatment or care whilst in hospital, or from a community medical team. With advancements in treatment, complex though that treatment is, poor care should never be seen.  Issues around failures in the surgery offered by one surgeon at Leeds Royal Infirmary have … Continued

Update on the infection risks associated with heater cooler units used in open-heart surgery

NHS England have sent us this update on the issue of the very, very low risk of heart infections in children and young adults who have recently had open heart surgery. See below. Every patient, or their family, will be receiving a personal letter of explanation from their local hospital team in the next month … Continued

Heart charity spread Christmas cheer at Bullring

Little Hearts Matter recently entertained shoppers at Bullring Birmingham with Christmas carols and live music. The charity and guests performed Christmas carols and festive songs along with two choirs: St Alphege Music and Bourneville Young Singers and the brass band Bold z Brass on Saturday 3rd December. Little Hearts Matter, which is Bullring’s Charity of the … Continued

Help us raise awareness of the needs of children with heart disease with the Department of Work and Pensions.

Why does the Department of Work and Pensions exclude Heart Disease in Children from DLA guidance? 1 in 145 children a year are born with heart disease and a further unknown number develop heart disease in childhood. There are 3700 open heart surgeries carried out on children every year. However, the DLA Assessors’ Guidance does … Continued

Help us make a change to Disability Living Allowance for children with heart disease.

Why are so many heart children turned down for DLA despite their disabilities? We think it’s partly because heart disease is not given a place in the guidance used by the people who look at claims. On Tuesday 29th November national children’s heart and adult congenital heart charities are holding a meeting in Parliament to … Continued

Holiday company to support families when their child has half a heart

A holiday rental company, called Charmron, with apartments in Eastern Algarve Portugal, have agreed to donate funds from each booking to Little Hearts Matter, a national charity that supports families when their child is diagnosed with half a working heart. The holiday makers decided totcher, owners of Charmron, said: “After finding out we had hosted … Continued

Bristol Children’s Hospital invite patients and families to a listening event

The Bristol Children’s Hospital team are inviting patients and families to a listening event on Thursday 13th October. Please click here to download the newsletter which contains more information about the listening event.

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