Anyone else who has to ask for Mycophenolate & Hydroxy every month from GP instead of having it on repeat prescription?

I saw my GP yesterday to discuss various tests & treatments I have been having recently (I was diagnosed with MCTD with 'lupus like symptoms' according to consultant in April 2013) and to go over my medication. I am under the shared care of my local rheumatologist and The Royal Free n London. My local rheumatologist prescribed me Hydroxychloroquine but thought I was having a reaction to it so stopped it. They then prescribed me Mycophenolate. When I saw the consultant at the Royal Free they didn't think I had had a reaction to the Hydroxy (rather a flare) so prescribed me Hydroxy again and told me to remain on the lower dose of Mycophenolate 1g rather than increase it to 2mg as I had been about to do. All good so far but I have now run out of the Mycophenolate and Hydroxy that the hospitals gave me so I asked my GP to add both medications to my repeat prescription. Basically I was told I could not have the drugs on repeat prescription and that I would have to request them every month. I don't understand this but as I had already been with the GP for nearly 40 minutes I didn't have time to go over it there and then. I will contact my GP and ask why I can't have the drugs on repeat prescription and if I have any further problems I'll contact my consultant for advice but I wanted to know if anyone else has this problem with their GP and these particular drugs? What I don't get is that my GP will prescribe the drugs but not on repeat prescription but as I have problems with memory and brain fog the onus will be on me to remember to ask for the drugs and in good time to make sure the surgery gets them in on time (it's a country practice with their own pharmacy). I guess I'm just concerned that I will forget and I don't understand why if I can have the drugs and as long as my consultants feel I should have the medication I should have to request it every month.

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  • I'm only guessing but it could be that your GP is falling good patient safety guidelines.

    On the drug you're now on, do you have to have regular blood tests with your GP?

    It may be as simple as when you request your prescription your GP will want to ensure that you have been attending for your regular blood tests in line with the shared care protocol. So long as all is well, they will prescribe the medication. I believe for methotrexate the most recent guideline is only to prescribe one month at a time too, for patient safety reasons (or it is in my health authority).

    It probably is with this in mind, rather than to make life difficult for you. Hopefully your GP can clarify this for you.

  • I am on Mycophenolate and my GP can not prescribe it so I get mine from the hospital I ring them up when I need some and they send out 2 months supply I am told my GP is unable to prescribe it due to the fact that I am taking it for something it is not labelled for.

  • Thanks for your replies. I've just emailed two of my consultants (they're usually good at responding to emails and it's easier than trying to talk to a secretary I've found) to ask about it and if there is anything they can do to see if I can get repeat prescriptions from my GP or make other arrangements. I only found out yesterday I had to have monthly blood tests! I have had regular tests when starting Hydroxy and then the Mycophenolate but after 3 months they stopped but I did have one a couple of weeks ago when I was at the Royal Free having an Iloprost infusion so I presume everything is OK...!

  • I am on Methotrexate and am only given a months worth at a time. I am sure ( as others have said ) that this is for safety reasons as bloods have to be taken regularly and the amount you take will alter over time. These type of drugs are given under shared care schemes, the consultant has to prescribe it initially but it is up to the GP to monitor things. Can you put reminders in a calendar or diary?

  • Thanks all - just got a reply to my email from one of my consultants (how good is that?!) saying they have written to my GP asking them to enter into one of these shared care agreements for the mycophenolate and the 4-6 weekly blood test monitoring. I don't know if that will then mean I can get it on repeat prescription (and on repeat prescription I only ever get one month's supply of each drug anyway but it means I don't forget to order it) or whether I still have to formally re-request it every month and whether the hydroxy is included in that agreement or not etc but I'll wait for my GP to get the letter and then talk to them about it. I am terrible at remembering things and always try to write things down on my calendar and attempt to set alarms on my mobile phone but still get in a muddle. I've evem been known to check and re-check appointments I've made and STILL managed to write them down wrong. Doh! :-(

  • It most probably means it will continue in the same vein. I have the same problems. The actual GP has to authorise it every month and they wont give more than one months supply. I have already asked my consultant whether he could prescribe and he said he was happy to do so. I havent gone down that route yet but may request again at my next clinic appointment.

  • I am on both hydroxy and Mycophenolate. My consultant writes to dr once a year stating what meds they want me on and my gp does it on repeat prescription. I have boots do the Dosett boxes so I don't have to worry. Hopefully the gp will just do this.

  • hi, I'm on shared care with GP and hospital. My GP gives me prescriptions for plaquenil but only 2 months supply and not on repeat prescription, I have to make an appointment to see him

  • It's interesting how there is not one system for all of us which is odd considering we're all under one umbrella - the NHS. I had never heard of a Dosett box Cma9905 but have just googled it and think it's exactly what I need - thank you!

  • You are so right tcogb. My GP won't prescribe my drug at all (6-mercaptopurine) and I have to go to the clinic to get my consultant to re-prescribe it every 3 months, at great inconvenience to both of us. My GP says it's because their surgery cannot monitor it, so I arrange the blood tests myself, ask for print outs of the results, check them as insturcted by my consultant and report back to him when I see him or notice something going wrong. If I can monitor things and I am not medically qualified, don't ask me why my GP cannot! Crazy.

  • Bitternwatcher and all other replies (thank you all for your contributions - I've learnt a lot the past two days!) I've now looked into this a lot more and as I understand it, it seems that whoever signs the prescription is legally and clinically responsible for the drug prescribed to you and monitoring you. With drugs that are used to treat conditions for which they were't originally licensed, a GP will not normally be the Clinician to first prescribe them, the prescriber will be a consultant and only when your are stable (on the drug concerned) and you have been initially monitored may the consultant then want your GP to enter into a shared care agreement where the clinical (and presumably legal) responsibility is shared and the drug can be prescribed by your GP and you can be monitored monitoring by your GP. Some GP's refuse to do this and apparently are perfectly entitled to do so if they feel they don't want to accept the clinical and/or legal responsibility and/or do not feel clinically able to monitor you.

    This is from General Medical Council website:

    Shared care prescribing

    41. If you share responsibility for a patient’s care with a colleague, you must be competent to exercise your share of clinical responsibility. You should:

    a. keep yourself informed about the medicines that are prescribed for the patient

    b. be able to recognise serious and frequently occurring adverse side effects

    c. make sure appropriate clinical monitoring arrangements are in place and that the patient and healthcare professionals involved understand them

    d. keep up to date with relevant guidance on the use of the medicines and on the management of the patient’s condition.

    42. In proposing a shared care arrangement, specialists may advise the patient’s general practitioner which medicine to prescribe. If you are recommending a new, or rarely prescribed, medicine, you should specify the dosage and means of administration, and agree a protocol for treatment. You should explain the use of unlicensed medicines, and departures from authoritative guidance or recommended treatments and provide both the general practitioner and the patient with sufficient information to permit the safe management of the patient’s condition. *

    43. If you are uncertain about your competence to take responsibility for the patient’s continuing care, you should seek further information or advice from the clinician with whom the patient’s care is shared or from another experienced colleague. If you are still not satisfied, you should explain this to the other clinician and to the patient, and make appropriate arrangements for their continuing care.

    And this is from the British Medical Association website:

    • What is a shared care agreement?

    Sometimes GPs will come to an arrangement with a consultant regarding a patient’s care where in essence the clinical responsibility is shared between the two doctors. There will usually be a formalised written agreement/protocol setting out the position of each, to which both parties have willingly agreed, which is known as an ‘effective shared care agreement’. This could also be an enhanced service that the GP provides. There are some drugs (e.g. certain growth hormones, Erythropoetin, Methotrexate, Ritalin and Memantine) which it would not be appropriate for a GP to take sole responsibility for without sharing the care with a consultant. A GP can refuse a shared care agreement if he or she is not happy with the burden of responsibility it puts on the GP, and then the consultant must take full responsibility for prescribing and any necessary monitoring. Pressure on a GP to prescribe, where a GP does not agree, is not acceptable.

    So it seems as it if does entirely depend on an individual GP whether or not they are willing to share responsibility with your consultant to prescribe these drugs used to treat conditions for which they were not originally licensed and share your care and monitoring.

    And we're all just caught in the middle ;-)

  • That's really useful to know. I have scleroderma but not lupus but have just been prescribed Mycophenolate by my consultant. When her nurse gave me the prescription she said 'she's not sure if your GP can do a repeat or not, doesn't know whether he is allowed to' which I thought sounded a bit strange (this is all quite new to me) so although it's an 8 week prescription, I thought I'd better start finding out about the issues and now I understand. My GP surgery will be doing my bloods anyway so I assume he can then monitor me which hopefully means he will be able to do repeats after an initial check-up when the first lot run out.

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