TOPIC:

My husband & I have been trying to help our war vet friend to get the generics, as I've written about on another post..
He's a geno 3, on his 2nd liver TP, & Dr James has been so very kind & helpful.

But we keep coming to dead ends at his hospital.
His specialist isn't keen on the generics, unhelpful.

Now we find out his specialist wouldn't be able to monitor him anyway because he's going away on holidays for ages, which is fair enough, but wouldn't you think he could get another liver specialist there to over see his tx support?

A nurse there rang our friend today to tell him this, that he wont get monitored.
....So the same old.." we suggest you just wait for the orals which aren't long away"..........heard this one before, like for the last 2 years.

She actually suggested that you don't really "know' what's in these generics & shouldn't take the risk.
This makes me so mad.
He's confused enough as it is without her saying that.

He needs close monitoring because of bile duct problems & all the meds he has to have as well for his dodgy liver..

This nurse wouldn't speak to my husband, refused to, even though our friend asked her to as he's brain fogged out.
She could hear him in the back ground (speaker phone) & said he's not to talk, only our mate.

Why's it so hard?
Why do the big wig specialists make it so hard?

We feel like we're just hitting our heads against a brick wall.

What is the big deal? why on earth is it so hard to get anything across?
They don't want to listen (some of them).

Sorry, but had to have a rant!!

Cindi x

As I mentioned, Dr James has been incredibly helpful through all this, and now we think it probably best to wait 'till he can have full support from his specialist with the monitoring, as he's a special case because of the transplants.

We don't want anything to go wrong, best to wait 'till this specialist has had his holiday.
This is probably the best thing for him as he lives close to the hospital in case of any problems.

I personally think doc James is the one who deserves a good long holiday, he seems to never stop working.

Never, ever known a more caring, dedicated & brave doctor, as our special Dr James.
We're all so very lucky to have such a staunch doc on our side
x

CJ wrote: snip.....

This nurse wouldn't speak to my husband, refused to, even though our friend asked her to as he's brain fogged out.
She could hear him in the back ground (speaker phone) & said he's not to talk, only our mate. .........

Hi Cindi,

The highlighted piece is a huge concern! May I suggest that you recommend to your friend (and support them) to speak with either a community or Viet Vets advocate. The advocate's role is to listen to and discuss and define with their client what the clients wishes are, and to then represent those wishes to the relevant person or authority. They will have either the legal skills or the contacts with those skills to ensure that your friend's voice and wishes are heard. I believe this is important for your friend regardless of what decisions are made regarding his treatment.

G

Sounds like a good idea G, thanks.
x

I think GAJ has a great suggestion too Cindi, in the light of such recalcitrance by both the specialist & nurse...its just appalling the way your friend has been treated, and in such an offhand way...and to say you don't know what's in generics? Seriously. I'm scratching my head to work out why you've had such a different experience at the clinic to mine But your friend definitely needs some kind of organised advocate on his behalf, to get a bit of traction with the system.

All the best of luck.

Hi zhuk,

This is about more than the friend's medical treatment.

He nominated Cindi's husband as someone he wished to participate in the phone call as his representative. The nurse refused to accept his wishes. Now, she may have privacy or undue influence concerns but she does not appear to have expressed anything to that effect and in fact seems to have continued the conversation while excluding his nominated representative.

I would suggest that she appears to have exceeded her authority. Cindi's friend needs someone who is fully conversant with his rights to ensure that they are not over ridden roughshod by the nurse's wish to make her life easier or thinking that she knows best.

An independent advocate can ensure that happens.

G

I agree, GAJ.

The cynic might even suggest that knowing CJ's friend has hep-related brain fog/comprehension issues that she seemed to want to cut the more lucid person out of the conversation, where they might take more issue with her attitude. Bad enough that she would treat any patient with such disrespect, but even more so a person who has such serious health problems to contend with...independent advocacy is definitely the way to go.

I can't see how they can refuse to monitor him Cindi if he was to start on the meds then present at the clinic for monitoring. Thats what liver clinics do if you have a crook liver they monitor you in fact the clinics in Australai have been monitoring us for so fucking long they ought all to be experts ! What harm rocking up day 5 feeling better and asking for an opinion, I know what my mate ray would have done.

Thank you for all caring so much.
We'll follow up on that advise.

But seen as his specialist is going on holidays for ages & because of the gravity of our friends situation with liver problems,
we've realised it would be better to wait 'till he can be monitored closely by the specialist, so will have to wait till he comes back from holiday.

Doc James has done his best with this, also talking to all the medics involved, but we've come to the conclusion we'll have to wait.

Paul, our mate knew your friend Ray, & in fact Ray's the one who got him help with this clinic & other things, he said he was a great bloke who helped so many.

And yeah it's terrible that our friend's request to let my hubby talk for him was ignored.

But he will get the generics, he has us & Doc James on his side.
it'll just take a little bit longer.
he wont fall through the cracks again.
x

yes, true, if he has all these problems, you should find some monitoring. I don't have anyone to support me aswell and in the beginning I felt strong about it but after a while you just realise that you need that extra support...the proces is to nerve-wracking on your own, especially if there are other meds or complications involved...

CJ wrote: Thank you for all caring so much.
We'll follow up on that advise.

But seen as his specialist is going on holidays for ages & because of the gravity of our friends situation with liver problems,
we've realised it would be better to wait 'till he can be monitored closely by the specialist, so will have to wait till he comes back from holiday.

Doc James has done his best with this, also talking to all the medics involved, but we've come to the conclusion we'll have to wait.

Paul, our mate knew your friend Ray, & in fact Ray's the one who got him help with this clinic & other things, he said he was a great bloke who helped so many.

And yeah it's terrible that our friend's request to let my hubby talk for him was ignored.

But he will get the generics, he has us & Doc James on his side.
it'll just take a little bit longer.
he wont fall through the cracks again.
x

It is so disheartening, distressing and outright frustrating when people who are supposed to help patients get better are condescending, refuse to help and show not a smidgen of kindness.

I hope you find some monitoring - Hope you can keep the strength and try all avenues until you get the support needed.

Regarding the the title of this ... "Why some Specialists so against generics??"

My first hospital, head hepatologist was given £80,000 by Gilead to write a 'research paper'.

My 2nd hospital (1st consultant was lovely actually, but didn't answer my email re generics) advises Gilead and other drug companies.

My 2nd consultant at current hospital said blithely - "If you take that route, you will have to pay privately 'IF' anyone has any space" - I have yet to figure that one out. Thanks for reminding me to see what I can find out.

As they say, 'Go figure'

(edit) Ah my latest consultant Dr ******** "has received educational grant support from Janssen, MSD, Gilead Sciences, Novartis and Roche" - There you go. If any UK forum members are looking for monitoring, please do not hesitate to PM me if you would like the above Drs names so as to strike off the 'approach' list.