Can you give a few minutes of your time over the next two weeks to help the British Liver Trust improve its patient information? We’re looking for people with experience of liver conditions to answer a few general questions about our publications, so we can make sure the information we’re providing is helpful, accessible and presented in the best way.
You can answer the questions via email or phone, and it shouldn’t take longer than five minutes – unless you want to tell us more! No medical expertise required – we just want to hear your views on the style and format of our publications.
If you’re interested, please comment below or contact karen.hollocks@britishlivertrust.org.uk
I have read all your publications on advice for cirrhosis sufferer,s and I can only say, that they are very comprehensive, informative,honest, and a boon for the new sufferers,s seeking advice, knowledge and reassurance.
Thank you so much David, we really appreciate your feedback. If you do have comments about any of our publications please do get in touch with Karen, your input as a patient is so important.
Very disappointed that once again Fibrolamellar Hepatocellur Carcinoma gets no worthwhile mention ..we have been assured each time that you update your patient leaflets that Fibrolamellar will be included...and once again you have failed to include it.
Response from Karen, new Publications Officer at the British Liver Trust:
I am very sorry to hear that you have been frustrated by the lack of British Liver Trust information regarding Fibrolamellar Hepatocellular Carcinoma. Work on a factsheet about Fibrolamellar is underway. This was started by the last Publications Officer and she had contacted a wide range of people including colleagues in America.
Looking at the files, the process was hindered by delays in some of the experts coming back to us. Unfortunately, the Trust did not have a Publications Officer in post for six months of this year, so its production was then delayed further.
Please be assured that the Fibrolamellar factsheet is one of my priorities now that I have taken up my post. I am currently reviewing its content and organising the appropriate checks with clinical experts, and aim to make it available via our website as soon as possible.
Looking at the files, it looks like my predecessor did contact the Fibromellar Foundation, but if you wouldnt mind sending the details again that would be great, then I can double check and follow up.
Perhaps you could send them to me in private chat and I will forward to Karen ?
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