Our Voice
Children’s Liver Disease Foundation is here to act as the voice for all children and young people affected by liver disease and their families.
The National Institute for Clinical Excellence (NICE)
NICE provides evidence based guidance and information for commissioners and providers of healthcare. The advice is produced for England but is often followed by the devolved healthcare systems as well. CLDF plays an active role in reviewing and commenting on guidelines, information and advice for healthcare professionals to ensure patients and families are at the heart of all decisions.
In February 2022, NICE confirmed that the drug Odevixibat (Bylvay) would be available on the NHS as a possible treatment for progressive familial intrahepatic cholestasis (PFIC) in people six months and older. Working with our families, CLDF played a key part in getting to this stage. Our families took part in the trials of the new drug and subsequently participated in the appeals process following NICE’s original decision not to recommend the drug for the treatment of PFIC. The result means that the lives of children with PFIC and those who care for them will be transformed.
Obesity Health Alliance (OHA)
CLDF is a member of the OHA which is a collaboration of 50 organisations who have joined together to advocate for policies to improve population health and address obesity. Latest available data from the National Child Measurement Survey indicates that in the academic year 2021/22, 23.4% of 10 and 11 year olds (year 6) were obese.
CLDF is particularly concerned about the impact on the liver health of children affected as obesity is a risk factor for non-alcoholic related fatty liver disease (NAFLD). We work with the OHA to develop and advocate evidence-based policy recommendations and to influence policy makers and the media in order to tackle the obesity crisis.
Prescription Charges Coalition
The Prescription Charges Coalition is a group of over 40 organisations campaigning to end unfair prescription charges for people with long-term medical conditions. Whilst prescriptions are free for those under the age of 16, or 16-18 and in full time education, the burden of prescription charges on young people can be huge. CLDF works with the coalition to campaign for all long term conditions to be eligible for free prescription.
Find out more here Prescription Charges Coalition – Home
Other organisations
CLDF is also a member of:
BSPGHAN – the British Society for Paediatric Gastroenterology Hepatology and Nutrition . This is a society that brings together colleagues from a range of professional disciplines and is recognised by the Royal College of Paediatrics and Child Health (RCPH) as being responsible for this field of paediatric medicine.
ESPGHAN – the European Society for Paediatric Gastroenterology Hepatology and Nutrition. ESPGHAN provides representation for all professionals involved in paediatric gastroenterology, hepatology and nutrition, to promote basic, translational and clinical science, to lobby for stronger support of research, and to offer the highest standards of education to members and all professionals involved in this important area.
National Voices – a coalition of over 200 health and social care charities in England who advocate for more inclusive and person-centred health and social care
European Reference Network Liver Group, the aim of which is to improve the care of rare liver disease patients throughout Europe.
In over 40 years of representing the interests of families whose children have liver disease, we have been involved in a number of campaigns:
Voice of child liver disease during the COVID-19 pandemic
During the first weeks of the pandemic in 2020, CLDF supported the National Institute for Health and Care Excellence (NICE) in the development of two of their guidelines:
- gastrointestinal and liver conditions that affect the immune response
- children and young people who were immunocompromised.
We also commented on the shielding guidance issued by BSPGHAN and liaised with the Scottish Government regarding the guidance they provided to ensure that the needs of children and young people with liver disease were covered.
Organ donation
Paediatric liver transplant is a life-saving development for children with liver disease but there is still a shortage of organ donors. CLDF was one of the charities who campaigned to address this shortage by changing the law to an ‘opt out’ system whereby individuals are assumed to consent to organ donation when they die unless they have recorded a decision not to or are in an excluded group. An opt out system is now in place throughout the UK What is the opt out system? – NHS Organ Donation. Families are always consulted before organ donation takes place, however so we still encourage all individuals to discuss their wishes with their loved ones.
Hepatitis B
For several years CLDF, together with other charities, campaigned for universal vaccination for children against hepatitis B in the UK. The Hepatitis B virus puts people at high risk of death from cirrhosis of the liver and liver cancer. The campaign was successful and in 2017 it was announced that Hepatitis B would be included in the universal infant vaccination programme.
Establishment of specialist children’s liver units
In 1999 the Department of Health designated surgery for biliary atresia to be confined to specialist children’s liver units in England and Wales. In addition, they decided there would a third specialist children’s liver centre established, based in Leeds. CLDF played a key role in making this happen. Find out more here
