Morning everyone. I found out about Late Effects clinics on this forum so I contacted the Beatsons clinic here in Glasgow.
Unfortunately the clinic will no longer operate from this month (March 2025) due to lack of funding. I was really hoping that I’d get some help at this clinic but what can we do. Lack of funding seems to be predominant these days!
I think you should scream from the highest point possible. The whole point of these clinics is to progress recovery from cancer treatment. The NHS doesn’t have all the answers and these clinics are gathering vital information to help people suffering from the aftermath of chemo, radiation etc. without these clinics doctors and consultants have no idea what we are going through years after they think we’ve been cured! Makes me so angry that funding has been cut, presumably to save money. Which of course it won’t because we’re all still looking for treatment and answers to the side effects. Meaning going back to GPs and other departments who don’t know about raidiated bowels, bladders and bones! I can only suggest you find a late effects clinic somewhere that might be able to help virtually.
I’m sorry angry for you. I really hope you can get some help soon. Xx
I was able to speak yesterday to Jane Hall who was extremely helpful. I don’t live in Lincolnshire - hence the phone call rather than face to face
Thank you!!! I will look that up
Hi grecogirl , Unfortunately this is a regional service for Lincolnshire only.
We have a list of Late Effects Services in the UK on our website: prda.org.uk/late-effects-se...
Some of these service may accept out-of-area referrals, though you may require a referral from an NHS Scotland Specialist to request funding to access NHS England Services.
If we can be of assistance please feel free to get in touch via our website: prda.org.uk/get-in-touch/
Best wishes
Sarah
PRDA admin team
Hi janfarrugia , I have removed the contact information for Jane Hall as this is a regional service for Lincolnshire.
Nothing in Scotland then 🤦🏻♀️
Well she spoke to me and I live in Surrey!
I literally just managed to get one their last appointments which is sad, coz I’ve waited 12 years for some sort of help with my issues.
They have said that despite not being to follow me up they can provide me with advice etc and direct me in right areas. So I’m hoping to gain something from it.
It’s such a shame they have cut the funding for such a valued service. It’s always the same. Xx
Thanks for your reply. This forum is great isn’t it? I’ve had so much information over the last year when I discovered it - as usual by myself and not via GP or medical professionals. I get by well enough using loperamide but now and then my bowels just need to evacuate and that’s when I have the Chernobyls as someone else here refers to them. I still don’t know how much loperamide to take. I get it on prescription - capsules. I see on the forum that others take Imodium instants or liquid loperamide. Is there a difference in effects?
I’m SO disappointed that the Late Effects clinic has discontinued. Just wanted to talk to someone face to face about these symptoms. I had rectal cancer and the usual treatments in 2013. Incontinence gradually getting worse as I get older. Oh well, it is true of course, as my consultant said, ‘you’re still alive and I did my job’
It’s fab I only heard of it from leaflet I got in the post from late effects.
I buy Imodium instants as if find they work faster, and like you I’ve no idea how many I should take, I just take one day unless I can’t get on top of the symptoms then I take more, but then I find my bowel sluggish and the pain is like labour, can’t win.
My GP is hopeless I’ve never even been prescribed anything apart from fibregel , I spend a fortune on Imodium and never leave home without it.
If I get any new info at the clinic appointment I will update you as my bowels are the main issue aswell. Xx
You should get loperamide (Imodium) on prescription!! Otherwise we would spend a fortune. I’m in Scotland right enough. Are you? We don’t pay for prescriptions up here 🤷🏻♀️
Morning Grecogirl
That’s super frustrating I’m so sorry. I know a bit of a hike but is there an after clinic in Edinburgh? The reason I say this as some of my aftercare has been done by phone and by zoom calls and of course in person visits but anything to get the ball rolling for you. It’s definitely worth it!
I’ve finally got my PRD diagnosis need to move to an irrigation system to help with my bowels. We’ve also done done pelvic PT I’ve been fully examined and I feel like I’m in great hands.
So I totally agree with Jimbo65 I would scream from the highest point possible like he said the whole point of these clinics is to help and to understand our side effects.
So call the GP call the clinic that’s closing and ask for the nearest alternative clinic. I know it’s not ideal.
I will say the best part (for me) has been the referral to specialist pelvic Physiotherapist maybe you could ask about that in your area. I am assuming that like most of us your issues are bowel/bladder related.
Keep fighting as it doesn’t come easy but after what we’ve all been through we all know that and we also know how to fight 💪🏼
I wish you the very best of luck xxx
Oh I will look into a Late Effects clinic in Edinburgh and… should I get a PRD diagnosis? Where would I go for that ?
Late effects Clinic for Pelvic Radiation Disease now open in Bristol Cancer Institute Horfield Road Bristol
Thank you so much to my pals on PRDA
6 Months on and we’re making some progress 🌞🌞
