I need your help again. I have recently moved to York and have been talking to the Rheumatology nurses about my prescription for Barcitinib which can only be prescribed by a Rheumy... I knew I would have to get on the waiting list to see someone but was led to believe that my prescription would be filled whilst I waited. Apparently not, and I am not considered an urgent case... I understand I am not in the true sense but I am regarding my prescription and I can't see anyone for at least 8 months. If I can't get my prescription I may end up being an urgent case... it all seems a little mad to me.
Anyway... if I can't get York to prescribe I will have to find a private Rheumatologist who can whilst I wait. Do any of you know who I could try first? Or have any suggestions on how I can sort this out.
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Mamamia21
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Hi, I know you have now moved but would your previous Rheumy be able to give you a prescription to tide you over until you get a chance to see the new one. It might be worth a phone call to explain the problem.
What an appalling situation - do they do the same for diabetic supplies I wonder!
This guy does private work and works in York NHS - the second link gives phone numbers which may be useful for you to contact a secretary. I think that is worth a try.
Seeing him would have the advantage of him being able to sort something in the NHS if it is possible. When I first looked I got some names (not him though) who I assume are in Leeds. One of them was a doctor I really wouldn't recommend although he may be better at things other than PMR! So do ask me if you decide to head for Leeds although that does have problems getting private and NHS aligned as they are different Trusts again.
It does seem very poor that people who move are reliant on the previous doctors - you at least were within the UK so travelling to see them is possible. When I looked at GPs the instructions were to be sure you had 6 months supply of medication - I'm not sure if I could do that as some medications I take are strictly limited on how much I can collect at one time. I have a very close relationship with my doctors here so I'm sure they would arrange something but more than 6 months-worth seems difficult to envisage.
Thanks PMRpro, I have gone back and left another message for the Rheumatology nurse saying that there was no way my Guernsey specialist could prescribe anything as it would not be valid in the UK. As I have left Guernsey I am not under them anymore... I did try contacting the specialist who works in Guernsey but is from Salisbury hoping she could do something and she said no... another door closed 😒. I was trying to stock up but like you said I had difficulty as they could not give me more than I needed per month. I managed 2 months extra but that was all...
If I have no luck I will contact your person. Thanks 😊
I just wanted to give an update on what has happened with trying to find someone who would prescribe Barcitinib...
Long story short... I managed to see Dr Green yesterday... a very nice man! However, it seems that Barcitinib can only be made available via the NHS so I am now on a waiting list to have it ordered for me by a private dr on the NHS... you could not make this up. If this was known by the Rheumatology department in York why did I have to pay to see someone privately to tell me this... I know I needed a Rheumatologist to do this but it seems a mad way to go about it...
Anyway thanks to a wonderful Rheum in Australia (that is another story) I have 5 weeks worth left and hopefully my prescription will be through in about 4 weeks...
I finally got an appointment to see the Rheumatology nurse about my medication as I tried to get the doctor to prescribe methotrexate which I am also on and they wouldn't. That became a saga too. Anyway long story short. I have a prescription for Methetroxate however, my Barcitinib runs out on Friday... remember I have been trying to sort this since April. I was sat in front of a nurse who was telling me that after filling in this form it would be another 6 weeks to get this system working. She also told me that I should not come off Barcitinib as a break may mean it stops working for me... I was so upset but tried to keep calm... She is now rushing it through but it might mean I have a week without it... I have 4 barcitinib left so now taking one every other day in the hopes that a miracle happens and I get some by Wednesday next week...
I don't understand this system at all... I know they have some in the hospital as an emergency supply as my daughter works there... but they wont give me a weeks supply to get me through... what is that all about.
They knew that this drug can take weeks to order and I gave myself plenty of time but they didn't. I am hoping it is all going to be ok. This is the first time in a long time that I have had a good couple of years feeling normal since 2016 and it might all come back because of this...
Looking positively... maybe I don't need these drugs after all and I will be fine without them... well we are certainly going to find out...
I do hope it works out OK. I'm really concerned about my return to the UK but it will be to Scotland and I'm told that they don't stop Actemra once you are on it and anyway even in England it is approved for inflammatory arthritis which is what is now on my notes. I think it is left hands and right hands not having a clue about each other and that is the fundamental problem after years of mismanagement, But whether they will ever get it sorted again remains a question of faith and hope.
I'm putting it off as long as possible!!! The weather is better there too - except in July and August when it is far too hot a lot of the time, But here in Scotland summer seems to have been cancelled altogether this year ...
Knowing what I know now I would have pushed for an appointment medication review before I got here... the problem is without an NHS number they wont give you one... so I am not sure how I would of got around that to be honest. I even paid for a private appointment and that didn't help either... it is just a crazy situation...
It is - typical of the UK's rather inward looking view of itself, outside agencies don't count!! I know that even moving practices within the UK you are often told to ensure you have 6 months worth of medication from the previous practice! Given some of them hand out steroids a month at a time ...
Yes, my pharmacy was getting ver suspicious when I started asking for more than one a month. I was only able to take 2 months extra with me... I would have tried harder to get more if I had known the problems I was going to have. I was very lucky to see a nice Rheumy in Adelaide as I would have been out of it six weeks ago...
I'm lucky - mine knows as a foreigner I am likely to need more than that at a time! Probably the hardest is the anticoagulant which is now restricted on automatic electronic refill but the GP can write a "pink" script for more. Last year I accumulated 8 packs as I would ask for repeats as other things ran out and the computer generated extra scripts for the anticoag as well in error!!!
Well a miracle happened yesterday. I got a phone call from the company that is employed by the NHS to deliver Barcitinib to say they have received a script and will be able to deliver it today... I will get a 3 months supply and they will follow up with the hospital my next script 6 weeks prior to me needing more. I have finally got this sorted.
It really should not have taken so much time, effort and stress but we are finally here and it was down to the Rheumy nurse I saw on Monday I am sure. She saw my face when she said 6 weeks and even 10 days at a rush... it is so much easier to get something done face to face. Over the phone they can certainly fob you off.
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