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What a week!

Kirsty07Kirsty07 Posts: 65
edited 23. Nov 2017, 11:55 in Living with Arthritis archive
What a week its been!

I'm due to run out of the methotrexate that the hospital put me on soon, so I phoned my GP to see if they had been given the letter yet explaining that I had been started on the medication and if I could have a repeat prescription. However, I was told it was the hospitals responsibility and that they would need to send over a shared care guidelines before they could take over prescribing. I asked the rheumatology DMARD monitoring blood nurse if she could give me a phone number I could ring to put me through to the hospital when she phoned on my blood test result phone call, but they do not have one and the admitted that the advice line is very rarely listened to (helpful...).

My GP then said they will not prescribe it yet as they can't do that until I have been on it for 3 months and have been stable. The blood nurse phoned me back to say she could get a letter sent over to my GP asking them to prescribe it but she can't sign it and the matron is on holiday. The GP used the word 'unfortunately' a lot. I asked how I was supposed to get the medication, and no one seemed to know. In which I replied that there's no point me taking it then.
On the 6th phone call from them I had gotten so worked up I burst into tears, after this the receptionist said she would try and ring the hospital and ask them to send a prescription but had to leave a message.
Today I received a call which sounds as though the receptionist got a phone call back from a consultants secretary who said she will speak to a consultant to see if they could please write out a new prescription and send it to me in the post. I hope I get given another 6 weeks worth because that will then bring me up to my next appointment, because I have no idea how I will get future prescriptions given to me and I don't want to go through all of this again.
I really hope they do send it out soon and appreciate that the GP has tried to get things sorted but I can't quite see why it all has to be this complicated and why hospitals and GPs can't speak to each other.
I have today started to have a bad flare I think because of how stressful its been and I hope it goes off by Saturday because its my birthday :(

I do have one quick question, as I made an appointment with my GP next week (to get some more sulfasalazine which seems fine to prescribe for some reason...) Do I need to get the folic acid on prescription or can I buy this from the shop? (I only take 1 tablet on a Friday and take the 4 Methorexate on a Monday). I'm just worried they won't prescribe me that either.

Sorry for the rant and I hope everyone else is having a nice week.

Kirsty x

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    My meth has never been prescribed by my GP, it's always come from the hospital (likewise my humira). When I was on sulph and NSAIDs they were prescribed by the GP after letters from the hospital but I no longer take either of those - none of this helps you though.

    I know from bitter experience that it's best if we do our own medmin (medicines administration) - I have learned to never presume that those who should be taking care of such things will have enough interest in their work to do so. Falling between two stools is so easily done and it is rarely our fault, it's usually due to one person saying it's another person's job and that other person saying no it isn't. :x

    Now, the FA. As I understand it the FA we take is prescribed because it is a stronger dosage than can be bought OTC - this was what I was told when I asked about it. Do you have a prescription pre-payment certificate? They save us a large amount of money. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Kirsty07Kirsty07 Posts: 65
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    My meth has never been prescribed by my GP, it's always come from the hospital (likewise my humira). When I was on sulph and NSAIDs they were prescribed by the GP after letters from the hospital but I no longer take either of those - none of this helps you though.

    I know from bitter experience that it's best if we do our own medmin (medicines administration) - I have learned to never presume that those who should be taking care of such things will have enough interest in their work to do so. Falling between two stools is so easily done and it is rarely our fault, it's usually due to one person saying it's another person's job and that other person saying no it isn't. :x

    Now, the FA. As I understand it the FA we take is prescribed because it is a stronger dosage than can be bought OTC - this was what I was told when I asked about it. Do you have a prescription pre-payment certificate? They save us a large amount of money. DD

    Hi DD,
    Thank you for your reply, its all been a bit hectic. I'm hoping that when I see the consultant in January next year I can speak to them about it, and see if there is a way I can get a contact of someone I can ring up to get my prescriptions, because clearly the advice line is useless.

    I'm also going to see my GP on Tuesday so am going to speak to her about it and my mum said she will come too, because she explains things better than I do sometimes.

    Hoping I will get there in the end just adds much more frustration doesn't it.

    Oh okay I see, I hope the GP may prescribe the folic acid as it is a type of vitamin isn't it and isn't a specialist drug like the methoreaxate is.

    Sorry to ask but have you been able to get the folic acid from your GP in the past? even though the hospital prescribes your medication. Also do you speak to the consultants secretary about your repeat prescriptions. I'm just trying to get an idea of how it all works, as I'm a bit clueless at the moment.

    I am looking into the pre payment scheme because I think it would save me a lot of money, which would be a big help. I'm just waiting for pay day at work :)

    Thanks again,

    Kirsty
  • InflexibleInflexible Posts: 31
    edited 30. Nov -1, 00:00
    I can only endorse what DD says about a pre-payment certificate, the penny has only just dropped and I recently got one - it's saving me a fortune.

    I'm really sorry you're having these issues Kirsty, the rheumatology department at my hospital have been brilliant and made a review appointment for me just as my stock of Methotrexate is gone, moreover I've used the Rheumatology Nurse advice line several times (including today) and they've been very helpful. I just hope you get the support and attention you need.

    I could be wrong, but I think the idea of monitoring you for three months before prescription duties are handed over to your GP are so that they can be sure that your blood chemistry is OK and that the methotrexate doesn't violently disagree with you.

    Martyn
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    You are quite right about the FA, it is a supplement rather than a medication. My FA is prescribed by the GPs after a letter from the hospital. I went without FA for around eighteen months because one person thought another person had dealt with it - they hadn't and I wasn't aware I should have been taking it. I had and have such little trouble with the meth that I don't bother with the FA even though it remains on my repeat script. I've been taking medication for most of my life and can sometimes be a little too casual about it all - what bothers others barely ruffles my surface but if you are new to it all then yes, it is a bother, confusing, difficult, sometimes distressing and certainly an experience no-one wants.

    I am pleased your mum is able to go with you, it is very easy for us as patients to get tongue-tied and flustered so having another voice/pair of ears can be an absolute blessing. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Kirsty07Kirsty07 Posts: 65
    edited 30. Nov -1, 00:00
    MartynP wrote:
    I can only endorse what DD says about a pre-payment certificate, the penny has only just dropped and I recently got one - it's saving me a fortune.

    I'm really sorry you're having these issues Kirsty, the rheumatology department at my hospital have been brilliant and made a review appointment for me just as my stock of Methotrexate is gone, moreover I've used the Rheumatology Nurse advice line several times (including today) and they've been very helpful. I just hope you get the support and attention you need.

    I could be wrong, but I think the idea of monitoring you for three months before prescription duties are handed over to your GP are so that they can be sure that your blood chemistry is OK and that the methotrexate doesn't violently disagree with you.

    Martyn

    Hi Martyn,

    Thank you for your reply.

    I'm planning on getting one next month if it can be processed before Christmas. I didn't realise quite how much I would save until I starting adding up the predicted costs.

    Thank you, I know its been a bit of a nightmare to be honest. When I was put onto Sulfasalazine it was fine and my GP prescribed it from the second prescription but its just been very frustrating on the Methotrexate. I just want to make sure I give it a go so I can see if it helps with the pain. Hopefully it'll get sorted, I'll see what happens.
    Your hospital sounds brilliant, I thought mine was quite good but they do not seem very good at following things up and explaining things.

    Fingers crossed it will work out okay in the end.

    Thanks again,

    Kirsty.
  • Kirsty07Kirsty07 Posts: 65
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    You are quite right about the FA, it is a supplement rather than a medication. My FA is prescribed by the GPs after a letter from the hospital. I went without FA for around eighteen months because one person thought another person had dealt with it - they hadn't and I wasn't aware I should have been taking it. I had and have such little trouble with the meth that I don't bother with the FA even though it remains on my repeat script. I've been taking medication for most of my life and can sometimes be a little too casual about it all - what bothers others barely ruffles my surface but if you are new to it all then yes, it is a bother, confusing, difficult, sometimes distressing and certainly an experience no-one wants.

    I am pleased your mum is able to go with you, it is very easy for us as patients to get tongue-tied and flustered so having another voice/pair of ears can be an absolute blessing. DD

    Thanks DD, that's been really helpful. Fingers crossed it'll be sorted soon and I'll learn how to request prescriptions through the hospital.

    Kirsty.
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