Glasgow PRDA advocacy

[WeeGinger45]

Hi There, are there any Glasgow based advocacy contacts for medical/emotional/family support? I'm currently tied in with Maggies who have been amazing trying to direct care into correct pathways. Been stuck in a referral loop for some time and trying my best to move this along. Had been referred into the Beatson late effects team via GP and unclear with this as referral came back.Best wishes, Moira

[Corey19]

Hi Moira, I attended the Beatson during COVID and had radiotherapy and brachytherapy with has resulted in radiation proctitis. It's been nearly 4 years and it's a struggle. My consultant has tried to refer me to the late effects team without much success and we were told it has to be someone at the Beatson who refers you which is frustrating as I am still under the Beatson but I see her at the Vale of Leven to save me travelling further. I'm going to pursue it further in the New Year. I do feel quite alone sometimes as my GP doesn't have any help to offer.

[WeeGinger45 in reply to Corey19]

Hi there sorry for the delay. Have been referred and it's tricky as came from forth valley hospital and no cancer medical links in Glasgow. Very extreme family/emotional consequences after treatment and then fell through the cracks during covid and piece by piece just getting back to actually getting through the day safely. It's been a horrific time including my son going to live with his father and now I don't see him and can't seem to access correct pathways. Was on the prda zoom in December after heating about it and cried all the way through the meeting when heard what this was about. I can't change a thing that's happened but really heartbroken as been trying for years to get help xx

[Corey19 in reply to WeeGinger45]

I'm so sorry things have been so hard for you, I hope this year brings better things your way.

[NJ85]

hi sorry you’re having such a rough time.

I accessed the late effects team in 2019 and was diagnosed with bile acid malabsorption. I’m sure my oncologist referred me. I then accessed again in 2023 as my symptoms were so severe and got a dietician. The Beatson also have a psychologist which can help me with his you are feeling. Your oncologist or cancer nurse specialist should refer you to both of these services

[Msdoubtfire]

I have used the services in Glasgow and it was my oncologist who referred me. Try phoning your oncologist’s secretary or your link nurse. The services really help so it is worth pursuing.

It is hard but life can get better xxx

[Greektragedy]

Hi Moira. I have been receiving support from the Late Effects Team at the Beatson for the past year and have found them really helpful. They have provided me with medications, referred me to various departments to try and pinpoint the root of my problems and have also provided emotional support at a time when no-one else appeared to care.Unfortunately, in my last telephone consultation on Monday I was told that the unit is closing this month. NHS Greater Glasgow and Clyde have decided to withdraw funding for.the only late effects unit in Scotland. I have written a letter of complaint and intend to copy it to MPs and MSPs for the area.

[WeeGinger45 in reply to Greektragedy]

I'm really glad you've been getting support that's amazing. It's so difficult to even speak about things and how difficult can be. Really glad found this group