Late effects Clinic for Pelvic Radiation Disease now open in Bristol Cancer Institute Horfield Road Bristol

[jude-the-obscure]

I attended the late effects clinic last Friday and met with two therapeutic Radiographers who specialise in the management of late effects. They were so helpful and understanding and gave me a whole hour of their time.

I received useful suggestions on a range of issues, and they were truly empowering. People can self-refer to Zoe Walker for help and advice. At present it is pilot scheme sponsored by Macmillan. I must confess I shed some tears of relief at being "heard and understood" by professionals in this field.

Zoe will liase with my GP about some changes to my prescribed medicines.

I Downloaded the new journal on a better way forward for the treatment of Late Effects after PRDA conference. Beware - it is many pages long! Haven't read it all yet!

Best wishes to all, in the hope that there will be a brighter future!!!

Jude 😊

[Oonsy]

Hi there, this is really positive news, thanks so much for sharing!Can I ask is this available in a specific geographic location only? I'm in Northern Ireland and unfortunately we don't have any late effects clinics here at present.

[jude-the-obscure Community Pioneer in reply to Oonsy]

Yes, I fear it is for the Bristol UK area at present, but I have kept asking for a Late effects clinic for some years and it has finally happened. We do try to offer guidance on this website however and share any tips and ideas with participants. It cannot replace advice and prescriptions from your GP but may be supportive and helpful in the meantime. All radiotherapy departments should consider offering this service as many of us are now living much longer than previously. This is a benefit to us and our families and friends but has its drawbacks too! Radiotherapy is "the gift that keeps on giving".

Please let us know what you are coping with, and we will try to offer useful comments!

The late effects clinics are doing their best to educate GP's too!

all the best

Jude

[AlfredSaxon]

Hello Jude

I'm pleased that you have found a useful source of support. As I live near Bristol I did an internet search for Bristol Cancer Institute in Horfiels Road Bristol--I'll try searching the Macmillan site. Macmillan have a presence within the Southmead Hospital site, but the road next to the buiolding is Southmead Road.

Best wishes

[jude-the-obscure Community Pioneer in reply to AlfredSaxon]

I can give you the email address of Zoe Walker if you like. She is pioneering this clinic. It is Horfield Road - sorry if I mistyped it! best wishes

Jude

[jude-the-obscure Community Pioneer in reply to jude-the-obscure]

Email Zoe Walker at : [e-mail] I am sure she will get back to you

Kind regards

Jude

[Silver1-lady in reply to jude-the-obscure]

yep I have sent an email thanks again

[Bluegenie in reply to AlfredSaxon]

It's behind the BRI, off St Michael's Hill.

[jude-the-obscure Community Pioneer in reply to AlfredSaxon]

Alfred, you need to contact Zoe Walker. She will send you a questionnaire to complete and then if she thinks she can help you she will send you proper appointment

[e-mail]

Best wishes

Jude

[Silver1-lady]

amazing news I spoke to a gasroentonologist in south bristol a few weeks ago please share co tact details of Zoe as I to have been hunting for help and was referred to south bristol by my gynae consultant and specialist nurse I’m on amitrypiline and it does nothing for the pelvic pubic pain I suffer with it would be good to talk to someone who understands the PRDA have been amazing as well

[Silver1-lady]

this is where I had my treatment so why do the specialist nurses not know about it I gave them lots of info re PRDA and they said they would let me know they did refer me re bowel bladder issues to south bristol hospital

[jude-the-obscure Community Pioneer]

It is a new development. I heard about it when I rang the senior radiographer who monitored my treatment 11 years ago. She referred me to Zoe. You can self-refer but it is at the oncology unit not south Bristol. I will get back to you with some more details tomorrow

Regards

Jude

[Silver1-lady in reply to jude-the-obscure]

thank you that will be brilliant. I had my radiotherapy there and chemo in 2018

[jude-the-obscure Community Pioneer]

Hello

It is Jude again

Try contacting Zoe Walker via her email address: [e-mail]

I am sure she will get back to you quickly. Macmillan are sponsoring this venture, but if they can produce evidence for their success, then it will become financed by the NHS

Best wishes

Jude

[Sarah_PRDA Partner]

Thanks so much for sharing this with the community jude-the-obscure being heard and understood is so important. So please you had a good experience ♥️

If anyone wants to look at the Best Practice Pathway for Pelvic Radiation Disease it can be found on our website: prda.org.uk/prd-best-practi...

The document is aimed at healthcare professionals but is also an opportunity for people living with PRD to better understand their current care options and how to advocate for better care for themselves.

[Bluegenie]

Thank you for letting us know, Jude. This is fantastic news for me, as I live in Portishead. 🙂

[Silver1-lady]

thank you again Zoe contacted me yesterday

[jude-the-obscure Community Pioneer in reply to Silver1-lady]

Great! She is really helpful.

Jude

[piselli]

Hi I just wanted to add that my oncologist at BRI referred me to Zoe and when I spoke to her on the phone she asked whether I'd prefer to go to Bath RUH clinic where I'll be going in January. I didn't realise Bath also offer this but am relieved as BRI is a pain to get to for me!