Liveryman Tom Ross, OBE, is chairman of the Children’s Liver Disease Foundation. At our dinner on 30 January he updated the Company on how donations from our Charitable Trust had make a big difference to the charity.
This what Tom said:
Liver disease in babies and children is comparatively rare , with a similar incidence to childhood leukaemia. There are about 100 different types of liver disease, so some are very rare indeed, and all are life-threatening. The effect on families when a diagnosis is made is often devastating, and it was through providing information and emotional support to families that CLDF had its origins about 40 years ago.
The provision of emotional support and information to families remains a key activity for CLDF. It also provides information and education to medical professionals, it funds research and it acts as an advocate for liver disease in children in a world where competing demands for health service resources make the voice of those with comparatively rare conditions difficult to be heard.
Over the past 11 years, CACT has made regular donations totalling £52,000 to CLDF, and I would like to record the gratitude of all connected with the Charity for this generous support. One of CACT’s wishes is that donations should be used in ways which makes a real difference to people’s lives and I am confident that this has been achieved throughout the past 11 years
As with many medical conditions, early diagnosis is key to a successful outcome. The right aftercare is also vital. A problem with liver disease in newborn babies is that symptoms of liver damage are very similar to those of jaundice and are easily missed by busy practitioners who may not have come across the condition before. The Charity’s highly regarded Yellow Alert campaign, which aims to educate midwives, nurses, health visitors and GP’s about the early warning signs, has been supported for some years by CACT donations. It is a campaign that has undoubtedly saved lives. CLDF has also run many study days for practitioners covering early diagnosis and aftercare. The materials for these days have been funded by CACT donations. The feedback has invariably been excellent.
CACT donations have also supported the funding of information packs for parents and families of affected babies and children. These cover a wide range of topics, for example information about the particular condition of the child, how to navigate the hospital and aftercare system, managing diet and drug regimes, and explaining the implications of it all to siblings. Despite all the information now on the internet, we find that families really value leaflets and booklets that are relevant to their circumstances and are expressed in non technical language. The actuarial world is not the only one where there is a danger that experts will lapse into jargon!
In conclusion, thank you again to CACT and its donors for your support. The liver journey for children with liver disease and their families is not easy, but your support has helped to make it much easier that it would otherwise be.
Tom Ross, 30 January 2020