Well, now it's my turn to blog. I just have to get rid of these feelings somewhere!!
Markus went for a check up today, as they told us he should a couple of months ago. The first contact should have warned us - in fact, it did. The good woman at reception was expecting us, but wanted the transfer slip saying what examinations Markus should have. Well, we hadn't been given one. She didn't believe me and said so. Blood tests and gastroscopic ultrasound, I told her.
Blood test and ultrasound, she corrected me. M was not registered for a gastroscopy.
So, we waited, as you do, and the nurse took some blood. And we waited again.
Then the oncologist we saw last trotted by, to be waylaid by the receptionist. 'We have 3 different versions of the tests Mr H (Markus) should have' she said.
'We've got one on paper, one in the computer and now his wife tells me something else'.
Big Onc paused in his flight to say that a gastroscopic ultrasound would be good and this was arranged for next Monday at 7.45. Good, that at least.
The Onc mentioned a CT, but I only understood that it wasn't possible today.
X rays we had with us already, fresh this week. So now an ultrasound. And Mr Big Onc whisked away in a flurry of white coat
So we waited again.
Then Miss Little Onc ushered Markus into the ultrasound room and said 'Why are you here?' For our breakfasts, of course. If she doesn't know....
'I haven't read your file' she tells Markus merrily. Then she ultrasounds his stomach area. 'Didn't find anything' she says, gaily.
Nobody, but nobody, looks at his chest. He has cancer of the oesophagus, and an enlarged lymph node which has paralysed his vocal chord. He still has no voice.
Markus asks about having his PEG feeding tube removed. 'Oh, we like to leave them in' says Little Miss Onc. 'When your oesophagus is completely blocked we can't put it in again!'So she has registerd there's a tumour there. Not a tremendously sensitive way to deal with the situation.
'That's it' says Little Miss Onc and ushers us out.
'Here's your transfer for next Monday for the gastroscopy' says Receptionist
'Don't forget to come'
We start to walk out.
What about the scan? Is that all? I go back and say I don't feel very happy, I'm not sure that all the tests have been done.
'It's all perfectly clear'says the receptionist. 'Blood tests, ultrasound and lung x rays. Those are our tests here'.
I search out Little Miss Onc then, who says we can have a ct within a week if they think it's necessary.
We leave, thoughtfully and with a great feeling of insecurity again. Standard tests, maybe. But if your cancer is somewhere else?
Next Monday we'll see.
I have to say that this is not the UK, not the NHS.
FormerMember
AAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHH- Feel better? How annoying was that little visit!! It doesnt inspire much confidence in any one or anything - you know what you need to know - as does the Oncol - but communications seems a little lacking. Then there is the dreaded recetionist 'holder of red tape' person - Oh dear and in their hands we trust! Of course the tests will be done my love but oh what a frustrating visit for you. Much love and hugs, Jools x x xx x
Do I take any comfort in knowing that it's not just the NHS that is unable to communicate with itself, let alone us? Not really. But I shan't dwell on it or I will get depressed.
I hope your next visit is a more satisfactory one Pat.
Whether NHS or elsewhere Pat - medical people should be trained how to communicate with people - not just treat their illness! They just don't realise how much additional stress they cause - by not handling situations correctly with a disorganised, awkward, or too casual attitude!
Is to pick out who you want to believe and go with that. Stick to their view at all times and make everyone else do the running about. The scan didn't sound very good. I mean not informative or helpful. The receptionist is just doing what people tell her and is only getting half the story.
Perhaps the Big Oncologist is the right one to go with. He's bound to be hard to pin down. Take a recorder with you next time to catch what he says, and play it over every time someone tells you different. In the meantime, try and get him on the telephone. I know they use them, I've seen them.
I might be completely wrong on the strategy, but the principle should be right. You are just seeking definition, and the one in the driving seat is the one to provide that. I took a recorder and asked at the beginning for permission on the grounds that it was too much to take in and I would need to play it back. They were perfectly happy to allow it on those grounds. Oncology is very complicated, so they would accept that.
It may not be the NHS, but maybe there is a Patients' liaison office at the hospital. They would tend to field complaints and sort them out before they solidify on the hospital record.
Dear Pat, I am so sorry that you got another lousy day, with people that are ill equipped to deal with your problems in a civil manner, I know this is not the UK or NHs, but it makes no difference, we all want to be treated in a confident respectful way. I hope that your next appointment is much better, if not kick up a fuss, what have you got to lose.
Tom and I went to Addenbrookes today, he will start treatment on 18th August, has to have scans and endoscopy first.
