Finally an Oncology appointment!

Hello ansteynomad 

Well - at least you have an appointment in a time scale which is way off the Government Targets. i assume the delay in this appointment is awaiting his CT Scan results from 21 September.

I know you involved PALS but my personal opinion is that you should contact your local MP - a nice e-mail giving the full time line of DH's diagnosis path and ask two questions:

* What do they intend to do to stop others in the same boat having these issues.

* Are they able to push for an earlier appointment than 23 October as the anxiety is unbearable.

Sadly this is the NHS in some areas these days - the more people who contact their MP to raise awareness we can only hope the service improves.

Please do keep us up to speed.

Best wishes - Brian.

Millibob said:

Targets. i assume the delay in this appointment is awaiting his CT Scan results from 21 September.

I guess so, although no-one has explained why they needed to do a CT scan on a lung nodule that popped up on the PET PSMA scan and is therefore presumably malignant?

Hello ansteynomad 

You said it's a CT Thorax scan. That's usually done with a contrast so it will be of the chest cavity, lungs, bones, heart, blood vessels and everything else in there. I notice you are a member of the bladder cancer group too - so it's possible they are doing the scan to ensure they have everything.

I think you need to be starting your list of questions for the oncology meeting on 23 October - here's a link to some questions to start your list off with:

Questions-to-ask-your-healthcare-team.

I hope this helps.

Best wishes - Brian.

No contrast on last week's scan.

I joined the bladder cancer group 5 years ago when he had some investigations but got the all clear.

I have questions at the ready. We have already had two Urology appointments where the specialist nurses had said we would get a full diagnosis and a treatment plan. On both occasions we were just told he needed another scan 

Hello ansteynomad 

You appear to be given the "run-a-round" here. I refer to my first post I would be getting my MP involved - there's no joined up plan here!

(My wife had some issues a couple of years ago - she had been in hospital for 10 weeks with no one taking the lead - it was between 2 departments. In the end I e-mailed my MP with full details. 24 hours later after his intervention we had test results, scans, a plan, equipment supplied and she was home!)

Best wishes - Brian.

If you don't get the help you need from the Oncology Department, I strongly suggest that you raise absolute hell.

Start with the MP, and then the board members of the clinical commissioning group and others. You can find the information about who they are like this:

"For Integrated Care Boards (ICBs) in England, which replaced Clinical Commissioning Groups (CCGs), you can find contact details and information about board members by searching your postcode on the NHS Organisation Data Service website. The name of your ICB will appear under 'Higher Health Authority' in the search results. Once identified, you can visit the ICB's official website to find information about its board members and leadership."

If you can, write to each board member personally. I found websites like LinkedIn helped with this.

Local radio stations will carry your story, and it will be on from there.

I am not suggesting that you do this just for yourself, but for everyone else in your area who are suffering the same way as you.

I wish you well, both in terms of your health and your particular position.