Anyone not seen an oncologist?

Good Morning AM123

So sorry to hear of the awful circumstances around your dad - it's shabby treatment to say the least. I can only offer the following and hope it helps:

* I had a delay in my contact with oncology. I spoke to my dedicated nurse in urology and ask the question why my case not been brought to the attention of oncology. There had been an error in my records and the contact was missed. I then received my appointment with both an apology from the Urology Consultant and the Oncology consultant.

* Mrs Millibob spent 15 weeks in hospital with a diabetic/back pain issue. We could not get the matter resolved and PALS were useless. In the end I e-mailed my MP and the day after the e-mail the issues were resolved. The hospital couldn't do enough for us.

It's worth a try with the MP - you need answers and you need them now.

I hope this helps and that your dad's condition makes significant improvements.

Kind Regards and Best wishes.

Brian.

I would contact the oncologist's secretary and check that your referral for appointment has not been lost if you have not already done so.  I would then contact your MP.  Look them up and contact them via email.  We did this years ago about my sister's care it was 2007 - around about this time as she was taking up space in a hospital bed when she could be home for Christmas releasing a bed for the use of someone else but they had told her that a machine she needed to use could not be used at home - we found it could be and indeed was being used by people at home in that very area.  We got a fantastic letter from the MP and it was referred to the Minister for Health and she was home with the machine for Christmas. 

Thank you for your response and sorry to hear you’ve had such a rough time of it as well.
My dad hasn’t been assigned a specialist urology nurse, surprise, surprise…

I will try PALS again, to be fair they have been reasonably helpful in our case, but failing that I will try the MP, that’s a good shout. 

The G.P is utterly useless as well. There is one G.P at the practice and she works three days a week. She has never once seen or even spoken to my dad since he joined three years ago when my parents moved house. She hasn’t recently remotely prescribed him some Adcal (we have no idea who asked her to prescribe this, it was the pharmacy who rang my mum to let her know it was ready for collection). My dad is being tested for hypercalcaemia so Adcal is the absolute last thing he needs. It’s all so frustrating. 

Like others, I agree that your MP should be a useful contact.  Other options depend on where you live in the uk as I only know the system in England  - and Scotland etc might be different? In England Care is organised geographically at ‘System’  level so you could write or email  the chief executive of your integrated care System. You could also contact your local Healthwatch.. locally you might have a ( non hospital provided) patient advocacy service? Also, your dad’s GP might be useful? ( if you can get through to him/her!) some options!

I have found that the most stressful and tiring part of this whole cancer journey is having to constantly monitor what is and is not happening for my husband within the NHS and assertively, persistently but politely requesting the appropriate care he has paid for all his life in terms of taxes. I just wish the NHS could recognise it is just that - a SERVICE which we all pay for.

best of luck!

I find it amazing how service is so different throughout the UK, I never had a problem with contacting oncology, I've never seen my oncologist but we have spoken by phone every 4 months, I was told by a registrar not seeing my oncologist face to face is a good thing as he is responsible for giving any bad news. I cincerly how you all get the service you require when you require it 

I have to say that, so far, the oncology service has been spot on - no need to chase anything up. I’m hoping the experience will be the same when the RT is due to start!

Pleased to hear that, I had no problems with RT 

Apologies for delayed response, had a crazily busy few days. 
I’ve contacted PALS again, waiting for a response. If no luck there, will contact MP. I feel guilty for doing that and/or complaining as I worked for NHS for 24 years and I know how horrible it is at the moment with all the backlogs, but I just want my dad to get some decent care. 
we’ve heard nothing about the biopsies he had taken two weeks ago, or the results of his blood test (to check for hypercalcaemia) and he has no appointments scheduled besides his MRI in January. 
The GP is completely useless, may as well not even exist. 

Good Morning AM123

I know it's hard when you have worked in the NHS (Mrs Millibob did 30 years as a nurse) but you need to look after dad!

* I would get the MP's office address and phone number and speak to his secretary to get things moving as soon as possible.

* Regarding the GP and tests - my results from my GP took ages to come through. To get this sorted I have the NHS app. I then requested full access to my GP records on the app. I now see my test results as soon as they are back with the GP. I then ring them and ask what they are going to do now they are back.

I hope this helps - if you need to speak to me you can private message me - it's no problem.

All the best for Christmas and New Year - and remember there's always someone on here to talk to.

Kind Regards - Brian.

Thank you for your help. I’ve just spoken with my mum who said dad cannot get out of bed this morning due to the back pain and feeling like his legs will give way. I’m very worried about spinal cord compression and so angry they have flagged him as high risk but haven’t arranged for an MRI until 7th Jan. Mum has contacted palliative care team and is waiting for them to call her back so I’ve told her to stress the concern about MSCC. But I think you’re right, I think it is time to contact the MP.