Frustration over results delay

[Lee359]

Just a rant, don't; have to answer
UK here, so NHS. Why is it that they are so secretive over giving results? I phoned the nurse specialist yesterday, 2 weeks after the I/O to be told the results were there and no, I couldn't have them because I have to wait for an appointment.
Ok, so when is that? Tuesday after the Friday Multidisciplinary review today or maybe after the next MD review, next Friday. Depending on what they consider necessary.
Totally Unbelievable.

It's like "You don't need to know the results, we'll decide what's best for you, dear"

Is there a way round this stonewalling?

[steveb_uk]

You could try your GPs surgery (assuming your specialist nurse is not part of that)

Not that I used this at the time, but I found out my pathology report was available long before the first appointment with my oncologist. I needed a copy for insurance, so I just phoned up the practise and asked if I could have a printout. From the printout, it was clear that a) the surgery had a direct logon to the hospital where the pathology was done (it wasn't a scanned letter or anything) and b) the report was completed about a week after the I/O. This was all done though the secetary at the GPs office. It was a bit like getting blood results.

Regards,

Steve

[Lee359]

I tried asking my GP but he said he didn't have access. Not even to the blood test results
Apart from the obvious just wanting to know, I need a copy for insurance as well.
Maybe I'll have to try a different approach Monday

[Jules]

I understand your frustration I think they are condesending, it is why I went private, my tale makes me really angry, here some more of their scattyness.

1986 discovered mass in left testicle, went to see Dr Burman, imigrant Dr. who let my Grand Father die of stomach cancer saying he was fit and well and prescribing paracetamol (tyronol) he died in agony. Dr. could not feel the mass so that was the end of it, go away, the least he could have done was an ultra sound, but they are took arogant and self assured, it was nothing.

1994 works Dr at Atomic energy could find no lump, end of story

2012 Jan. pain swelling, Dr Cumar no lump come back if not better

March 2012 Dr Preist I can feel no lump but as a precaution I will send you for an ultra scan and they find a testicular mass.

So I had been walking round for years with potentially a very dangerous Mature Teraoma inside me, what does it cost for an ultra sound scan?

You could pay around £200 to see an oncologist privately in a centre of excellence, ask your GP for a referal letter and a contact, he might see you straight away and the NHS would be forced to hand over the blood pathology.
Anyway sorry for hijacking your thread, I hope your bloods come back OK, I know how you feel the waiting is awful and if you ever need a moan again then lets here it because I'll listen or you can always PM me. Good luck on your results.

[Jules]

Just another thought, now might be the time to go private, the main thing is to see an oncologist, after the initial consultation you can have NHS treatment but through an oncologist you choose at a centre of excellence, as he'll remember you and as you are choosing him you might get better care and CT scans quicker etc, results quicker.

[steveb_uk]

Sorry to hear you've tried my suggestion and it didn't work. If its any consolation I had terrible trouble getting an ultrasound sorted out (it was originally scheduled another two weeks after I first saw the urologist) and at one point I was going to pay for one myself. As seen by the dates below I had to wait 17 days between I/O and results of CT/pathology.

[eodtech2001]

It is easy to get blown off over the phone. Instead show up at her office and ask for the results. I hate to say it but for the most part you are a number in the system. By showing up in person you place a face to the number and it makes it much harder to get blown off.
If that does not work simply state, " Look this is my life you are dealing with. With testicular cancer time is important it could be the difference between life or death." While you are there ask to speak to her boss. Trust me those little thinkgs go a long way with getting results.
I had to do that with the urologist office, they had the dam report for a week. I had to do the leg work to track down why it was taking so long to get it back. Heads rolled and I took my life care into my own hands and went to the Mayo clinic. Two days later I started chemo.

just my two cents

Stormin Norman

[David72]

Hi Lee,

I agree with Norman...go in person. I went private in Ireland but also extremely frustrating as my report was sitting on consultants desk but he was on holidays for a week (they actually told me this - it was almost like "I am holding your results in front of me but I cant trust you with the information even though its your cancer"). Your taxes are paying for the NHS and its your life......can your GP not push a bit harder? Its madness.

[Grump_uk]

I am sorry I don't think blaming public health care is the answer, it is usually individual people or their local way of doing things. My GP practice seemed to have lost large parts of my history but yesterday morning unblocked the delay at the CoE and got me the oncologist appt with the same person I could have paid to see later privately. Not sure how paying for an early initial consultation then jumping the queue and expecting public treatment really helps -- even though I was ready to do it!

I have had a struggle to get my results in writing from anyone but now I know that by phoning hospital medical records and paying I can have copies.

My initial path was 8 working days with the supplementary a day later. The urologist gave me pre MDT feedback 3 days after that having brought forward the initial appt. It seemed like years.

The MDT made a referral decision different to urologist prediction, as he warned they might which was why normally he saw patients afterwards, and that is where the delay happened, 3 weeks to see the oncologist but to be fair it appears no longer to be an urgent referral - I now have the letter - and Easter got in the way.

No one likes waiting, it certainly is no fun and I did my share of complaining but it is likely to be a fact of life for a while, get involved and work with them. My experience so far is that I got further and as long as I knew I had not fallen down the back of some filing drawer and something was happening whilst not exactly happy I was not totally wired.

Hope this helps.