Wall of silence

[Pug Gamer]

Hello everyone, i am on azathioprine and of course have my regular blood tests. My GI has said every 2-3 months now. I had one in january and one 2 weeks ago. The forms are either from my GP or the hospital ones from my GI and i fill in the section "copy to" with GP and thats been fine for 6 months. Everyone got a copy of the results, happy days.
Well i put my repeat in wednesday, got a call yesterday morning saying i cant have my azathioprine as i havent had a blood test since Jan! Grrr! After explaining, they have told me I have to get hold of my GI, and get him to fax over my results. After explaining this is impossible due to being impossible even in a emergancy, to get hold of anyone. They still refuse. It has taken 8 months to build up enough to work, and for 2 months now ive been doing well on it. I cant miss any, but i run out tomorrow and have frantically been calling IBD nurse and my GIs secretary for 26hours now. They dont answer so you have to leave voicemails. Which they are both not answering!
Its stressed me out to the point of kicking my stomach off. My docs refuse to help me or do anything to contact them. Ive done my part and no one will admit whos at fault for this, so i dont know how to stop it happening again!?! Its happened before but i thankfully had a GI app the next week, and they gave me my pills and warned me next time it has to be done by.
Sorry for the long post, what should i do?

 

[Sophabulous]

This is my fear too. The hospital have now handed over prescribing the drug and checking bloods to my GP surgery, but they asked for a book to record all my results in. If that goes astray or doesn't get updated I'm screwed!

I feel your frustration, I've had this with other medications where the script hasn't been sent over or the pharmacy have lost it. Nobody will admit fault and even if they did it doesn't help when they refuse to dispense the prescription!

Maybe put in an official complaint from the point of view of getting an investigation into how it happened. It doesn't help you now unfortunately but they will be more diligent in future I'm sure!

 

[Pug Gamer]

Thats a good idea sophabulous, about the book with my results! I might ask them about that, because at the moment i dont touch or see any results ever. I just keep getting my pills and hope its ok. When i see my GI he'll tell me its fine, if i ask him to check my bloods. I think i will say to him when i see him in june, that hell have to give me a months supply there and then, so if it happens again ive got a buffer. On my repeat they only give enough to literally give me 3 days worth after getting new ones as early as i can, so no room for error. It is a worry, maybe you could also ask for a little buffer amount? I wouldnt recommend being in my position if you can help it lol.

 

[Sophabulous]

My hospital simply posted me the results book automatically and when the GP rang to confirm they asked me to hand it in for them to keep up to date. Definitely worth asking them about! I also have a copy, but it's a little bit pointless as it never gets updated as I don't see the results either

I might do that too, a few days supply never hurts! For what it's worth as azathioprine is slow acting anyway, I don't think missing a few days will reverse the good it's done. Of course it's not ideal and you are having symptoms again but try not to worry. I've got a bit lax with taking it on a few occasions and never noticed any difference but that's likely because I wasn't even thinking about it never mind worrying!

Take care

 

[Pug Gamer]

Just a quick update, my IBD nurse got back to me. She is such a life saver. I honestly feel like she cares. She is dealing with it all, my GP wont answer phone to her and shed been trying for hours to get the fax number. She said not to bother trying to get hold of my GI as she cant either and they are in the same building! My results are good except my vitmin D deficiancy is still bad, my GP sent me a letter refusing to prescribe it and said i need to pay over the counter. My nurse was angry by this and is forcing them to put it back on repeat as id have to take tens of pills per day to make up for the dose i take. She is stating the "duty of care" they have and have failed me on to them. I also now have a vitamin B12 deficiancy, so need injections. Im going to send a thank you card to her.

 

[Sophabulous]

Awww, glad to hear she's sorting it for you! She does sound like a gem

I went to pick mine up yesterday (ordered last Thursday to pick up yesterday) and the GP hasn't sent it over to the pharmacy yet! So I'm now out too! Tempted fate there, although I suppose it's my own fault for leaving it late. I put it all in a pill dispenser every week and didn't realise it was even that low until I was refilling it last week! [emoji31]

 

[DEmberton]

Mine was always prescribed by the GP. The GI told me to go and see them so they could manage it, and I completely confused the hell out of the receptionist trying to explain the situation. She could only say "do you want to see a doctor", which I didn't. In the end they got a doctor to phone me and was able to set it up.

Good old NHS.

 

[Sophabulous]

Mine was always prescribed by the GP. The GI told me to go and see them so they could manage it, and I completely confused the hell out of the receptionist trying to explain the situation. She could only say "do you want to see a doctor", which I didn't. In the end they got a doctor to phone me and was able to set it up.



Good old NHS.

Oh lord, that sounds like fun! Thankfully my surgery were fab and handled it straight away. They were the ones who said to hand the book in for them to record the results. I was a bit nervous as the hospital were dispensing it for the first 3-4 months but it was a seamless transition for me. There was even one month my wbc count went a bit squiffy and they were straight on the phone to book me in for another test within 2 days.

I will defend the NHS til my dying breath but it isn't without its faults and it can be bloody frustrating at times!

 

[JMC]

Ok, so this is the same problem I have been battling with for several years!. My problem is this, I live in South London and I go to a hospital in East London (Royal London and the Barts) because it is close to work and convenient. My GP is on the Kings College London computer system, but cannot access blood test results taken at the Royal London(!) Therefore, unless my GI write a paper letter to my GP they do not have blood results and will not prescribe azathioprine resulting in me having to take time out of work to go to King's for another blood test.

In the end, I had no option but to submit to my GPs demands and have blood tests with them from time to time. It is infuriating but there seems to be a "computer says no" attitude and GPs are scared to prescribe if the computer flags up "red" even if you tell them you have had a test and you are an adult and willing and able to take responsibility for your own body!