Worried about diagnosis of bone mets

Hi CCG.

I am very very sorry to hear about your oncology appointment that is a crazy amount of time to wait.

When we have any problems with appointments we have got a list of consultant secretary's phone numbers and email addresses who we can contact.

You can also contact the hospital to see if they have got any cancellations???

If you have no joy with these you can contact the "PALS Service" at your hospital.

I do hope that this helps???

Prostate Worrier.

Hello CCG 

That's no use.

So first off I would be contacting the sender of the appointment letter and reminding them of the Government Guidelines - 62 days from diagnosis to start of treatment.

Next - If the initial contact refuses to give and earlier appointment - tell them you are available to drop everything and take a cancellation. You need to remind them that he's been diagnosed with Aggressive Advanced Prostate Cancer with a Gleason 9 score.

If that doesn't work it's the hospital PALS department (Patient Advisory and Liaison Service) ask them politely but firmly if they can do anything. Again remind them of the Guidelines, it's causing anxiety and it's aggressive.

The next step - it's your MP's office and the local paper.

I know it's wrong but my CNS said to me "Brian - in the NHS he who shouts gets" so a polite but firm stance is required.

I hope this help - please keep us posted.

Best wishes - Brian.

Hi

We were told 12 week waiting time. I felt very anxious with that.

I thought I read somewhere amongst the vaults of info that hormone therapy is counted as treatment. Not sure if that’s correct or not but certainly manipulates time frame. Given that the biopsies etc show what’s what I thought a referral should start then to save time but apparently only after results are given.

Hello GilliB 

Yes, technically being started on Hormone Therapy is the start of treatment,

The exact words are "should have a confirmed diagnosis and start treatment within 62 days"

Now to me if you have Prostate Cancer you tend to see the urologist first and they will more often than not start HT. Yes that's treatment BUT the argument is it's not the full treatment pathway as you are waiting for oncology and THEY sort out the FULL treatment pathway.

It's akin to when you e-mail a big organisation and they e-mail you back to say we have your e-mail and are dealing with it. Why not just deal with it and reply.

The other "issue" is all health authorities and the devolved Nations are ALL working under their own interpretation of the guidelines - to say it's frustrating is an understatement.

(I am working with other volunteers and some staff on a project trying to find a simple way to resolve this issue!!).

I hope this helps.

Best wishes - Brian.

Thanks Prostate Worrier; really helpful :)

Thanks Brian, really helpful steps, I’ve shared them with my family. Hopefully we can get movement on this. 

Hi CCG. 

My partner had a 4 month wait time from Diagnosis to Consultant meeting, so we paid for a Private consultation straight after the urologist. (two months) We found the wait too long and stressful. 4/5 months is just too much.

L

Thanks L, was that a private meeting with Oncology? How did that work for starting treatment if it wasn’t on the NHS?

Hi Brian

Thank you for that. Echoes my thoughts exactly. It’s to tick the box.  Which then causes so much anxiety.

It helps with confirmation but doesn’t help with the wait and wanting to see the stronger treatment start.

Thank you though.

G

Hi CCG

it was straight forwards, we contacted the Royal Marsden and booked a "second opinion" on the scan and biopsy results and discussed what they would suggest as a treatment plan. We didn't have a problem , I think somebody here said they wasn't able to do that for some reason? Also jacobanddafna did something similar with the Oncology dept that they were with . she left an excellent step by step post a week or so. ago. Ive tagged her in so hopefully she will comment.

L