[Raglet]

I went to see my rheumie today - there is a STUPID new hospital policy that means I can only see her every six months, which is just crazy. To see her any more often means that i have to be referred back to the hospital by my gp, which in reality takes months so I am pretty much screwed. This is NOT an insurance issue (I have no insurance and do not live in America) it is hospital policy, and I see hospital specialists for my lupus. Don't really have any other options. That leaves me with my gp to treat my npsle.

Otherwise my appointment went well, and I have been referred to and ENT have my vocal folds looked at as it seems I have a nerve palsy going to one side of my larynx. Also a referral to orthotics for splints and those little finger clips to hold my fingers out so I can use them better (they curl in a ball due to a brain lesion). It's really disappointing that I have so much active disease going on seeing I have so recently had another round of rituxan, but thems the breaks.

cheers

raglet

 

[keebler]

Oh Raglet,

That is a very stupid policy. Cant your rhumey do anything about it? Write the hospital board? There has to be many others that are in the same situation that you are. Go on the air and let people know what is happening.

The idiot that thought up that policy needs a good kick in the bottom. We have enough problems without having to deal with idiots and the stupid decisions that they make.

I am sorry this has happened to you. :hug: Take care Raglet.

:flower2:
Lyn

 

[Katharine]

Hi Raglet,

Yep that is a very stupid policy I mean you can't be the only one that needs to see a rheumy more often! Six months is a long time, even I see mine about every 3 months (sometimes every two) and I don't have all the issues going on that you do.

As I say, you can't be the only patient in this boat, it's sheer madness!

Katharine

 

[BigSis]

I agree.......that seems ludicrous when your disease is so active:worried:

I see my rheumy every three months with a disease half as complex as yours.

Sorry Raglet, but I don't know how you can fight a hospital policy.

 

[nemo_importante]

Hi

I agree that this is a stupid policy. I see my rheumatologist every 6-8 weeks! Outside these times if I have any problems I ring her or leave a message with her secretary. Would that be a possibility for you?

 

[KarolH]

Raglet,

This policy is ridiculous and just obserd to boot!!!

I would love to know what suit and tie came up with this brilliant idea.

If you have a emergency then what do you do?

Is your GP qualified to treat your Lupus?

This also puts a burden on GP's who are not qualified to treat Rheumy conditions and that probably leaves the GP's annoyed too.

I hope this new stupid policy gets revised.

Sorry about all of the issues you deal with. My heart goes out to you. Let us know how you get along with the ENT doctor and good luck.:wink2:

 

[specialk16]

Awww Raglet... that stinks! I have never heard of that before. All I can say is hang in there my dear. My prayers are that you can fight the policy and win!

 

[Lis]

That is one stupid policy - it even puts UK NHS silly decisions and policies in the shade. Hope something works out for you.

Lis

 

[lazylegs]

Hi Raglet,

That policy is just nuts. In the long run it will cost them more because you will be seeing two doctors to see one. Plus that doesn't even consider the extra inconvenience on you. What school of economics did these bean counters go to?

Enjoy your weekend,
Lazylegs

 

[Raglet]

I think this is actually about a shortage of rheumies, so they are trying to cut down on follow up appointments. Fortunately my gp is very good with my lupus, and i know my rheumie will try and get me in asap if it all goes south. I have been seeing this rheumie for about 15 years, and she is really great and has done a lot of fighting on my behalf (many of you will remember my 18month battle to get rituxan approved).

They have also cut back on blood tests to check my b cell levels and I am not able to have them any more like I did after the first rituxan treatment. I think they will redo them in about a year. Actually I don't mind this as I as I could only get them done at the hospital, and I hated having to troop up there just for stoopid blood tests.

oh well, this doesn't actually surprise me, same old same old from our health system. It has always been pretty hopeless.

cheers

raglet

 

[helloos]

Hmmmm that just surprises the heck out of me. I am glad though you have faith in your gp to handle things. There are no exceptions at all to this rule? That certaintly is not in the best interest of the patients. Geesh.

 

[lazylegs]

Hi Raglet,

They no longer test for my B cells anymore either. Now they just go by the symptoms and treat accordingly.

Take care,
Lazylegs

 

[raggedyann1]

Hi Raglet,

I am so sorry to hear about this added frustration for you. The shortage of Rheumies is not just in NZ. There is a growing shortage of Rheumies in the USA that is expected to get even worse over the next 15 years as the baby boomers retire. From the sounds of your Rheumy things would get taken care of if you have any problems that need immediate attention.

Take care,
Karen