Hi All,
I contacted the BCN via their dedicated phone number on 1st March to advise them that the pain in my largest bone metastasis had increased and asked if my to be scheduled CT scan (due April) could be brought forward.
So far i have received no response.
I have had previous bad experiences of this team (primary diagnosis) and hoped they would be better now, but sadly mistaken by the look of it.
Anyone else had similar issues?
I will ring again today, and submit a complaint if i get no response by Friday.
I’m sorry to hear about the challenges you’re facing with the BCN’s response. It’s incredibly frustrating when there are delays in addressing health concerns. Making that call and advocating for yourself is a crucial step, and I hope you receive the prompt attention and care you deserve. If necessary, escalating the matter through a complaint is entirely valid. Remember, your well-being is a priority, and your persistence in seeking the care you need is commendable. If you encounter further difficulties, consider reaching out to patient advocacy groups who might provide additional support and guidance. Wishing you strength and a swift resolution to your concerns.
Reply received today after chasing. Delay was apparently due to BCN referring to a colleague.
CA153 is apparently stable but these have never been high for me (27) so not sure how useful they are.
No dramatic weight loss but its been going down steadily over the last 5 months. Whilst documented not commented on!
Still no guarantee that CT will be brought forward a couple of weeks, and until thats done i’ll be anxious, then stress waiting for the results.
Its so stressful.
Not sure if having a 2 month gap between Denosumab injection could be responsible either.
I despair…
After talking to the BCN I have a new date for my oncology appointment (great) but still have no date for the CT Scan.
Without the scan there is no way of knowing if i have or haven’t got progression.
Just called the BCN to ask about CT, quick call back and its this Saturday… no appointment letter has been received so could have easily been classed as a no show!
NHS admin is shocking, and i’m sure it adds to the volume of patients missing appointments.
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I’m having exactly the same issues. I got diagnosed 2 months ago, I keep being told I am having “urgent” referrals but in 2 months I have had 2 scans and been told to come off tamoxifen. That’s pretty much all the treatment I have had. I find it frustrating that primary cancer has targets which hospitals have to respond to but secondary cancer patients seem to be ignored and forgotten. I’ve rung consultants and emailed, but nothing is further forward. I hope things have improved for you by now.
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Hi,
Sorry you are having problems with hospital admin, its a mess. Anyway my scan came back stable amd my oncologist was more than happy to agree to a holidays (Philippines scuba diving).
Next appointment letters arrived and only a minor miss communication regarding picking up some medication.
I hope you get the appointments and tests you need soon. Keep pestering the BCN and go to PALS team at hospital if you get no joy.
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I had that problem with the BCN not replying due to referring to colleagues. I fed-back that while I appreciate that they are busy people the waiting is unbearable. I didn’t even know if my calls had been received. A quick response saying she was dealing with it would have made all the difference.
Due to my feedback the system has now been changed and if the BCN can’t get back or needs to investigate further an admin person responds to explain. x
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