Hubby update. Referral: Thanks to queueing at... - Vasculitis UK

Vasculitis UK

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Hubby update. Referral

Footygirl profile image
13 Replies

Thanks to queueing at 8.30 am on the doorstep this morning hubby got appointment with GP.

He told her his tale. Told her he had been on Vasculitis website. "Website?"

Yes, the people who know about vasculitis, and they recommend that I see this chap at the Kellgren centre MRI. He pushed the written details toward her. She just sat there. He moved them forward again, twice and repeated he wanted to be referred. She said ok eventually and is cancelling the derm one.

He also asked for the kidney function test. She said it had been done and it was 70 which was not bad. Without any other info. I have no idea what that means.

He is not willing to phone helpline, I dont know why. Maybe it would be too real?

Anyway, deed done thanks to your invaluable advice.

I will let you know how we get on.

Regards to you all

⚽️

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Footygirl profile image
Footygirl
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PMRpro profile image
PMRpro

One more step along the way we go ...

I might follow that up to be sure it hasn't been forgotten in a drawer.

Footygirl profile image
Footygirl in reply to PMRpro

😡😡😡😡😡😡😡😡😡😡😡😡😡😡😡

Just had phone call booking hubby appoint with dermatologist. Which was supposed to be cancelled.. Went yesterday for correct referral. Didnt do it in front of him 😡😡😡😡😡😡😡😡😡😡 now going back up to ask again. Showed him NHS site where first line is "in surgery with GP". I said they are giving you the run around. Hes gone off in a huff cos doctors dont do that😡😡😡😡😡

Sorry but after all hes been through, still not seeing the light. Sorry sorry sorry

I am changing surgery TODAY.

All this time hes not getting his diagnonis

Thanks

⚽️

PMRpro profile image
PMRpro in reply to Footygirl

"Hes gone off in a huff cos doctors dont do that" - they don't do they? He'll learn. ;-)

Did you hear about the guidelines from the Royal College of Surgeons?

morleyobserver.co.uk/news/s...

This is re surgeons - but maybe it will spread to other fields. The end of the "doctor knows best" culture they called it on Sky News this morning.

Footygirl profile image
Footygirl in reply to PMRpro

Sorry PMR the link wont work for me

I had hoped all my negative experiences would have made him aware. Hey ho

Hubby has just been told requests for second opinions are triaged by consultants to see you if will be given an appointment! So much for instant appoointments.

We awaitdevelopments

PMRpro profile image
PMRpro in reply to Footygirl

What - you mean being sent to a rheumatologist instead of a dermatologist? that isn't a "second opinion" - it's getting the patient sent to the right specialist...

in reply to Footygirl

hi again Footygirl, if you are in UK, each hospital has a PALS dept., Patient Advice and Liaison scheme. Ring, explain your situation follow up with email, calm, quiet. They are duty-bound to do something. Once I was sent to the wrong dept after waiting a long time, I rang PALS within 24 hours I was seen. I am an older person, I've had the impression many times, that older people are considered second class citizens. I follow my own rules, I keep ringing. Earlier this year I 'sat in' in the out patient"s dept., with a bottle of water and a sandwich, a space was made. Footygirl , I've done the same for other people. We have one life. Often, even in the surgeries, the receptionists who say they have no medical training, give appointments at their discretion. Here am I spouting, I should have a box in Hyde Park. Best wishes

weathervane profile image
weathervane

Great news, its terrible that you have to be pushy to get anywhere, i hope you get an appointment soon xx

hi Footygirl, I think the kidney function test is CPK or something similar. From tests I've had I believe 70 is very satisfactory. I think it depends on your hubby's age too. 😃

PMRpro profile image
PMRpro in reply to

Just thought you might be interested to know:

The kidney function test is eGFR, electronic Glomerular Filtration Rate, which they work out using your blood creatinine level, age, sex and race and do every time you have a blood test that includes creatinine these days. Creatinine in blood is a waste product of muscle metabolism and also comes partly from eating meat - and remains at a fairly stable level. The eGFR falls with age and a lower level is to be expected at age 70 than 50 just because muscle mass reduces as we age. Normal is above 90, 70 suggests a mild reduction in function - but it depends on age and diet.

labtestsonline.org.uk/under...

CPK is creatine phosphokinase - an enzyme involved in metabolism in muscles. It rises if muscle that has a lot of it is being damaged for any reason - in a heart attack, in some muscle diseases and acute kidney damage for example.

Footygirl profile image
Footygirl in reply to PMRpro

Thanks, guru, as always. You will be pleased to know things seem to be moving in the right direction, thanks to all the help from you guys and the helpline.

Love

⚽️

in reply to

well I made a mistake, thank goodness we have PMRpro. Thankyou

PMRpro profile image
PMRpro in reply to

No - not a mistake at all. They use all these abbreviations and unless you work in the field it is gobbeldy-gook. And I'm sure you've seen even GPs get it mixed up - and when WE know the right words we can't be dismissed quite as easily :-)

in reply to PMRpro

how right you are, I'm making a list for Friday when I go to my appointment.

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