A recent NHS England Public Consultation asked for views from both organisations and individuals on what should be included in a new 10 Year health Plan for England.
We have shared our response on our website if you would like to read them in full:
prda.org.uk/prda-response-n...
Best wishes
Sarah
Excellent news! After much hard work, a long-awaited Late Effects Service is going live in my own area (Oxfordshire) next week. This will also serve patients who live in neighbouring Wiltshire and Buckinghamshire.
great news! I have only been able to access a late effects clinic because I moved area. Late effects are part of the good news story that we are now surviving longer. Quality of life is important not just for physical health but for the effect on mental health too.
That's great news: however there is a need to ensure that clinicians provide a comprehensive explanation of the effects, including late effects, of radiotherapy before it is started
thank you for sharing
That's great. There are so many of us suffering & unable to access the appropriate help. The lack of knowledge of PRD in both Primary & Secondary care takes it's toll on both my Mental & Physical health. It's exhausting feeling like you are the Doctor & having to explain everything over & over again, just to be told that they don't know what to do!
Fingers crossed things will change in the future & thank you for the work that you do everyday to help us.
Good news but not for the U.S. which is behind Europe in acknowledging real aftereffects of Radiation therapy. In my case, during 44 days of externa radiation beam therapy for prostate cancer, my colon was destroyed. 60 days of immense acute pain and infection led to 11 days in surgery and ICU and removal of my perforated and infected colon. After the ileostomy, I am left wearing an external pouch attached to the end of my small intestine for the rest of my life.
BEWARE THE SHORT AND LONG TERM EFFECTS OF RADIOLOGY!
TexasPRD said what I was thinking: the USA doesn’t even call our after effects a disease. We are left to manage on our own with the doctors thinking that the cancer is gone and their job is done. Before radiation treatment began I had to sign papers confirming that I understood what the short and long term effects might be. (ie, “You can’t sue me now.” I remember thinking that I was gambling -and I signed the paperwork with hopefulness that it wouldn’t be me, thinking, “Do I really have a choice?” Best wishes to all of us.
I too remember signing those papers at age 19. What choice did we have!
I to remember signing and thinking OMG am I expecting anything as a result. Well yes but that’s another story
Wow, that was a lot of radiation! No wonder you were damaged. I have only known people who had 20-30 days of radiation. So sorry for what you endured. I am also in the U.S. and once patients are done with treatments, that's all the doctors feel they are responsible for. Pretty sad.☹️
Thank you for sharing this, Sarah. A really good response from PRDA. I hope there will be action as a result.
Hi Sarah,
Thank you for sharing this important document. I think it is really comprehensive. So many important points raised but in particular the part about coding PRD for nhs providers means that finally it will be a more widely recognised disease & hopefully that will bring about awareness, research, empathy & more importantly training into managing the disease in a holistic way (ie there being so many branches to PRD - gastro/urology/sexual/the list goes on!
I think I speak for many of us when I say just how hard it is to endure the cancer treatment & then unknowingly end up with the incurable disease that is PRD. For oncologists to say “it’s no longer an “oncology issue because the cancer has gone” , to be too complex for your gp & then get stuck in an endless cycle of being told by consultant specialists that it’s a complex and challenging condition to treat, it’s a very much trial and error approach! This alone proves the disease isn’t being managed & the expertise just isn’t there widely enough.
I really hope that funding is put in place to make late effects services available to every region. I’m fortunate & in my area (West Country) I was part of a pilot study to hopefully make it a commissioned service.
The sentence about adding life to years not years to life was so poignant!
amazing news !!!
Late effects Clinic for Pelvic Radiation Disease now open in Bristol Cancer Institute Horfield Road Bristol
Chronic Radiation Enteritis Sufferer
Recent changes
