Representing our families

The needs of the families, children and young adults diagnosed in childhood remains at the heart of CLDF’s work. Representing their needs and concerns to other agencies has become an increasing role for CLDF over the past decade.

Last year we reported on the considerable work and liaison we had undertaken in ensuring the patient voice and priorities were heard in considerations of care and professional guidance during the pandemic. This was done alongside interpreting guidance for our families and young people across the four nations and this work has continued . More recently questions about the COVID-19 vaccine have been top of the list for many families so we were delighted to be able put forward the concerns and questions of our families into a consultation from the Royal College of Paediatrics and Child Health, to help them develop guidance regarding the vaccines for children and young people with underlying health conditions. Our Voice work over the last period has however extended far beyond Covid.

CLDF lobbies for Yellow Alert to go into in the Red Book

Our Yellow Alert campaign to advise health professionals and new parents of the symptoms of liver disease in newborn babies has been a key area of our work for many years. Last year, together with Professor Deirdre Kelly (Birmingham), Professor Anil Dhawan (Kings) and Dr Eirini Serena Kyrana (Leeds, now Kings) we made formal representations to the Royal College of Paediatrics and Child Health about including Yellow Alert resources, including the stool chart, in the Red Book (The Children’s Health Record), which is given to all new parents. Together a detailed proposal was then developed and submitted to the National Screening Committee. The outcome of that work wasn't an immediate yes. We are encouraged though that the NSC have committed to extending the scope of the biliary atresia review due during the next 12 months to include a more detailed evidence analysis in relation to the resources. We will not stop striving to get the resources into the Red Book, but in the meantime will build on the successes with individual maternity units, encouraging more hospitals to give Yellow Alert resources to all new families on discharge .

New approach for treatment & eradication of Hepatitis C in UK children

We are delighted to be part of a new national multidisciplinary operational delivery network (ODN) to treat children and young people with Hepatitis C (HCV) in England. Launched in April this year, the ODN is the first in the world to provide a national treatment pathway for children and young people with HCV, ensuring that they receive high quality treatment and equity of access close to home.

The team will be led by Professor Deirdre Kelly and includes clinicians from the three national paediatric liver units; paediatric infectious disease specialists; representations from regional centres and patient organisations including CLDF.

We’re“ proud to be part of a multi-disciplinary approach which will mean that children and young people in England can now receive timely and appropriate treatment to prevent the long term complications of HCV” said Alison Taylor.