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CLDF’s patient voice work during the coronavirus outbreak

Over the last few weeks, we have been working hard to provide up to date information, signposting and support to children, young people and families affected by a childhood liver condition. Much of this has been published on our website and social media platforms.

A lot of work has also been going on behind the scenes to ensure the voice and needs of those affected by childhood liver conditions are considered in the development of national guidance for medical professionals.

Recently, we supported the National Institute for Health and Care Excellence (NICE) in the implementation of two of their COVID-19 rapid guidelines.

These guidelines have been developed to help medical professionals respond quickly and consistently to the challenges of the coronavirus pandemic. They are developed in collaboration with NHS England and NHS Improvement with a clinical group and supported by specialist societies, royal colleges and charities.

Professionals who would like further information about these guidelines can visit the NICE website using the links corresponding to each guideline above.

We have also been working closely with specialist paediatric liver centres, Institute of Health Visiting and other professional bodies to ensure biliary atresia referrals continue to take place during the coronavirus outbreak and supporting to recognise the signs during newborn baby checks. We are very grateful to all the organisations who supported us to spread this message. You can read more here.

We are aware many of you will be affected by delays in transplants and we recognise this is a major concern. Transplants have been focused on urgent and priority cases in order to ensure patients are not at greater risk of the virus. Work with NHS Blood and Transplant is ongoing and we will be communicating further information regarding this over the next few weeks.

We hope this gives you a little insight into the ongoing patient voice work during COVID-19. If you have any queries about CLDF’s voice and policy work or would like to share your thoughts please contact Harpreet (Information & Research Hub Manager) at

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