Request from the British Liver Trust- patient publications

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 [e-mail]

[davianne]

Hi trust 1,

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.

I can't fault them.

David

[Hidden in reply to davianne]

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.

Thanks,

Warm wishes

Trust1

[whatnow18]

Would be happy to help. Since cirrhosis diagnosis 18 months ago I have found site and publications very informative and helpful.

[Hidden in reply to whatnow18]

Thanks so much, please do contact Karen, we would be very grateful for any feedback

Trust1

[Mama41]

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.

[Hidden in reply to Mama41]

Good afternoon Mama41, please see message below -

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.

I hope this helps,

Best wishes

Trust9

[Mama41 in reply to Hidden]

Thank you for this. We have been trying for a few years to get Fibrolamellar on the info sheets..

I have in the past given you the contact details of the Fibrolamellar Foundation in the USA..please advise if you would like me to resend it.

[Hidden in reply to Mama41]

Good morning Mama41,

Message from Karen-

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 ?

Thank you ,

Trust9