Wait for oncology appointment

Hi Daughter93 is your dad on HT?  David

HiDavid2017  Yes he has had one Prostap injection with a short course of Bicalutamide. I know this will already be working but it’s a much longer wait than we were expecting or hoping for.

The wait will be 12 weeks so I believe it would also leave him short of time to decide and/or start some other treatments if those was to be an option?  

Thanks for that. Hopefully others will add their thoughts but once on HT the main panic is reduced.  David

Hello Daughter93 

Yes, I am sorry - although I am a volunteer for Macmillan we don't have access to your records, etc so I tend to give out information for England

In Scotland it's Patient Advice & Support Service Scotland - Link here - PASS - SCOTLAND

I do hope that helps. The cancer pathway is 62 days from visiting the Doctor to start of treatment. You can argue (I know he's started HT) you haven't had the Oncology appointment and the date given is causing anxiety,

I do hope that helps - if not please come back to me, I have other strings to my bow.

Best wishes - Brian.

Thanks Millibob . Do you think it’s still best to contact the Urology CNS in the first instance? I’m not sure if she will just end up speaking to the Oncology secretary my Dad spoke with today! 

Thank you for sharing the link for PASS Scotland. I’ve had a look on the website and forgive me if I’m missing something but after you contact them, do they reach out to the Department in question or advise you how to go about trying to resolve the issue?

Out of curiosity, what are the other ‘strings’? I know it shouldn’t make a difference but seeing ‘making a complaint’ does make me a tad nervous about the repercussions (although you’d hope there would be none when it comes to treatment!)

ItHi Daughter93 ,

I have to say that my knowledge about what happens in Scotland is very limited. However the Scottish Citizens Advice website gives a good summary of options.

The web page below summarises rights:

https://www.citizensadvice.org.uk/scotland/health/nhs-healthcare-s/nhs-patients-rights-s/

It refers to this page to see waiting times for treatment:

https://www.nhsinform.scot/care-support-and-rights/health-rights/access/nhs-scotland-waiting-times/#waiting-times-the-basics

There does seem to be a problem with the wait for the oncologist based on this but you are already being treated if you are on HT. Do some research on the likely treatment options available to you long-term  to discover whether the wait is counter-productive for physical reasons beyond the anxiety and fear felt. 

Seek the advice of the GP about the anxiety felt. If he/she prescribes treatment for the anxiety then that is support for any argument that you might have. 

Then the web page below shows information about complaints. The first stage - contacting people who are giving you the problem is standard for all complaints. Make sure that they understand your problem, but be kind about it. Ask for help before making any complaint formal. Make sure that they know that you will be available in case on cancellation.

https://www.citizensadvice.org.uk/scotland/health/nhs-healthcare-s/nhs-complaints-s/

Aside from that, I don't know enough to offer any other kind of assistance in Scotland, but if you look up the contact details for Citizens Advice Scotland, they will.

Best wishes ,

Steve

Hi again Daughter93 , I knew some others would be along with sensible advice, hope that helps.  If it were me, I would try and chat to the CNS as they know the system much better than we do and generally have a good working relationship with the consultants.  Best wishes.  David

The only thing I can add to the excellent replies is that it might be an Idea to stress that the delay might reduce your options in getting the most effective treatment. Here is the PCUK link which stresses the 12 week cut off for Triplet Therapy.

https://prostatecanceruk.org/prostate-information-and-support/treatments/darolutamide?scrollTo=triplet

I really do hope you get things sorted soon.

Good Morning Daughter93 

Like Steve (mstev2)  above I am in England and have used our system here. I am aware the Scottish NHS system is different and I am aware that in Scotland treatment times and waits are much longer than England.

I know that you feel if you complain that it may affect the relationship between the staff and patient, on the other hand you want the best possible treatment for dad.

My wife has a rare illness and was in hospital - no one wanted to accept responsibility for her, I spoke to the ward manager, then PALS, next a registered letter to the head of nursing at the hospital and finally a registered letter to the head of the Trust giving them 72 hours to sort things out. Nothing.  I then sent my MP the entire file. The following morning we had two consultants, MRI scan, two other tests, a back brace fitted, discharge arranged with appointments for ongoing treatments. 

It's a sad state of affairs now in the UK but to get things done you need to advocate for yourself.

I hope this and Steve's post help. If I can do anything else for you please let me know. Please keep us posted as to how you get on.

Best wishes - Brian.

Thanks all for your responses, my Dad has left a voicemail to speak to the CNS this morning so we will see what transpires.

I appreciate there are long waits on the NHS just now but I’m just very frustrated that the secretary said she could see nothing had happened with the referral once it was ‘verified’ on their system (23rd of December) so he appears to have gone to the back of the queue behind another 4/5 weeks of referrals. It doesn’t seem fair and makes it a very long wait so hoping they can do something to help.