New (UK) Guidance for gastrointestinal consequences of cancer treatment

[Sarah_PRDA]

Hello all,

Just to share that new guidance has been published by the British Society of Gastroenterology to help healthcare teams improve care and symptom management for those affected by the long-term effects of cancer treatment.

This is a positive step forward in improving care for people living with PRD.

Find out more and access the journal abstract* using the link below

prda.org.uk/new-guidance-on...

Best wishes from the PRDA admin team

*EDITED - the document is now fully open access 🎉 so you don't need a subscription to GUT to access it.

[katdotmead]

Hi Sarah

Do we have to have a subscription to the Gut journal to access this updated information? Could the PRDA obtain permission from Gut to have the full article available for PRDA members?

Best regards

Kat

[Sarah_PRDA Partner in reply to katdotmead]

Hi katdotmead , initially the document was only accessible to GUT subscribers but I'm thrilled to share, following feedback, that the document is now open access 🎉

[katdotmead in reply to Sarah_PRDA]

Thank you very much Sarah, that is wonderful news!!

I look forward to reading it.

[maddie_1234]

Hi Sarah, is the new Guidance automatically shared with GI consultants/specialists? I doubt that Gp's will even be aware of it. I went to my Gp a while ago with 1 page about PRD for her to read. She didn't even look at it & told me to keep it! That is what we are up against. It's exhausting when you're always trying to educate the 'professionals', especially when you're lying in agony in a hospital bed 😈😈

[Sarah_PRDA Partner in reply to maddie_1234]

Hi Maddie,

Unfortunately it's not automatically shared with specialists but as it being published in GUT it carries high significance and is more likely to shape gastroenterology-specific clinical practice and policies. It has greater impact, with guidelines published in GUT being well respected in the medical community.

I'm sorry to hear the experience you had with your GP, this sounds incredibly frustrating. It shouldn't be down to you to educate health professionals, that's why we're working hard to get the message out and spread awareness of PRD far and wide 💙

[maddie_1234 in reply to Sarah_PRDA]

Thanks for getting back to me Sarah. Yes, it's unbelievably frustrating when you are trying to educate even the Gastro Specialists. I have been dismissed so many times, I couldn't count. They seem to have the attitude of 'Don't tell me how to do my job!'. What does GUT stand for & can we now see the whole thing from the Link you provided in your 1st message? Thank you all for your continued hard work at trying to get the word out. I 🙏 that it will be taken on by those who are treating us with such complex needs after cancer treatment. 💕

[Sarah_PRDA Partner in reply to maddie_1234]

You're very welcome maddie_1234 , GUT isn't an acronym, it's just the title of the gastroenterology focused publication of the BMJ (British Medical Journal). The link at the top of the page takes you to our website article which has the journal link.

Never forget that you are an 'Expert by Experience' which deserves equal respect to medial knowledge 💙

[Sing72 in reply to Sarah_PRDA]

That is so true Sarah! Never looked at it that way before.

[Skellige Community Pioneer]

This is a real step forward, simply the acknowledgment of PRD symptoms is an excellent thing. Congratulations to all of you who keep pushing.

I’ve not been in touch for a while, as I was struggling with my own symptoms, and for a while I found reading other people’s experiences too distressing and what we now call ‘triggering’ for me - it raised my anxiety about what might be in store. I’m sorry I’ve not been more supportive.

I’m in year 11 post cancer, still hitting issues and still up against GPS and even hospital dieticians who have never heard of PRD, or if they have, don’t really know what to offer. However, on a positive note, I’m far less unwell far less often, due to low FODMAP and understanding my own particular PRD, so I’m grateful for that. Good luck and keep going, everyone.

[Sarah_PRDA Partner in reply to Skellige]

Absolutely no need to apologise!

Putting yourself first and your wellbeing is the top priority. It's wonderful to hear that you've found some success with the low FODMAP diet and seeing a reduction in intensity and frequency of the episodes you'd previously experienced. Thanks for sharing this with us, it's great to celebrate these types of wins too 💙 Lovely to hear from you.

[Sing72]

I've just read your post and learnt more about symptoms. I have had a poor appetite for some months now and problems with acid reflux too. Interesting for me to read that they could be under PRD too.

[Perido]

A gastroenterologist I saw recently didn't want to hear anything about the possibility that pelvic radiotherapy in 2017 might be contributing to my various GI issues. He cut me short and asserted that radiotherapy would only have short term effects with the exception of blood vessel changes.

Many thanks to all who are pushing for improvements to PRD care.