Medicine shortage

edited 30 November -1 at 1:00AM in Health & Beauty MoneySaving
30 replies 2.8K views
NickiNicki Forumite
8.2K Posts
edited 30 November -1 at 1:00AM in Health & Beauty MoneySaving
My DD takes liquid tegretol to control her epilepsy and is prescribed 3 bottles of it at a time. I have never found a pharmacy which carries this as part of its stock (I live in London) and it always has to be ordered which is usually very quick.

When I collected her last prescription from the pharmacy, they told me there was a manufacturing problem and they could only dispense 2 out of the 3 bottles, and to come back in a few days for the third. That was nearly 3 weeks ago and their supplier has still not been able to get any more in for them. DD has about 2/3 of a bottle left, which will last her about another week.

The pharmacist told me to come back again on Thursday when he hopes his supplier will have sourced some more. If he hasn't been able to find any however what should I do? Has anyone encountered this problem before? I imagine that most pharmacies have a common supplier or is this not the case?

Any advice would be very welcome.
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Replies

  • VfM4meplseVfM4meplse
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    Hi Nicki,

    you are right that most pharmacies have similar suppliers - there are 2 major wholesalers and lots of smaller ones, but ultimately the supply comes from one manufacturer (in this case Novartis), and if one supplier has run out, it's not long before everyone is in the same situation. To be fair, if there has been a problem with the manufacturer, they will try their best to give a date when the supply will resume.

    The specific problem you have is that you don't want you DD to fit unintentionally, but unfortunately the liquid and syrup are not interchangeable as the bioavailabilities are different. I'm sure your pharmacist will be doing their best to source this from another store that may have stock - even the independents are linked into other pharmacies and "borrow" non-CD stock - but I would suggest you give them a buzz tomorrow l/t to see whether any progress has been made (the tel no is on the label). Don't stress as you still have a week's supply.

    VfM
    Value-for-money-for-me-puhleeze!

    "No man is worth, crawling on the earth"- adapted from Bob Crewe and Bob Gaudio

    Hope is not a strategy :D...A child is for life, not just 18 years....Don't get me started on the NHS, because you won't win...I love chaz-ing!
  • Try another pharmacy - I often find large Boots' pharmacies have things in stock that smaller ones don't. You should be able to get another prescription from the GP so you can take it to another pharmacy. You could also ask your GP on the off-chance they know of somewhere that has it in stock.

    This doesn't help with your current situation, but if 2/3 of a bottle is a week's worth, and you only get 3 bottles at a time, that means you only have a month's worth at any one time? Have you asked the GP if you can get a prescription for a few months at once?

    For any important medication (insulin, and Keppra when I was taking that) I make sure I never have less than a month's supply, it's just too risky otherwise. (not risky in terms of dying, but risky in terms of having to faff about rushing to get an urgent prescription from the GP, then rushing to pharmacies to find one that has the right stuff in stock, and what if I've got flu and can't leave the house etc etc).
  • NickiNicki Forumite
    8.2K Posts
    Thanks VfM

    I am stressing a bit to be honest, as they have already been trying unsuccessfully for 3 weeks to get hold of it. I know that my DD's consultant does not want her to stop taking this abruptly, as when she had some significant side effects in the beginning we discussed changing it to something else. If she needs to change to another anti convulsant it needs to be a phased weaning off, which obviously can't happen if she has finished her whole supply and none can be obtained from anywhere else. DD has severe learning difficulties in addition to her autism, so only certain drugs are suitable and only in liquid form, and I know from these previous discussions with her neurologist that the options are very limited.

    Would you advise being patient for a few more days, or trying to get an urgent appointment with the consultant? It would need to be private, as the NHS does not work that quickly (roll eyes smiley needed) but we would rather do this, than go back to months of uncontrolled seizures and lengthy stays in hospital.
  • NickiNicki Forumite
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    Humphrey10 wrote: »
    Try another pharmacy - I often find large Boots' pharmacies have things in stock that smaller ones don't. You should be able to get another prescription from the GP so you can take it to another pharmacy. You could also ask your GP on the off-chance they know of somewhere that has it in stock.

    This doesn't help with your current situation, but if 2/3 of a bottle is a week's worth, and you only get 3 bottles at a time, that means you only have a month's worth at any one time? Have you asked the GP if you can get a prescription for a few months at once?

    For any important medication (insulin, and Keppra when I was taking that) I make sure I never have less than a month's supply, it's just too risky otherwise. (not risky in terms of dying, but risky in terms of having to faff about rushing to get an urgent prescription from the GP, then rushing to pharmacies to find one that has the right stuff in stock, and what if I've got flu and can't leave the house etc etc).

    I thought I was doing well to get 3 bottles at once. To begin with, they would only give me 1 at a time and I was having to visit the GP every 10 days for a refill! I was under the impression that current guidelines only allow them to prescribe a month at a time, but that might just be my PCT (or whatever the local body is now called!)

    I will give this a shot, but I have in the past tried a range of pharmacies for this, including large Boots without success. We live in London, so not out in the sticks, but I think it might not be something which is commonly prescribed in this form.
  • i had a similar thing with the pill a few years ago - one pharmacist told me to go get a prescription for another one... not helpful (not as serious as anti convulsion medication in any way, but the idea of changing because of a short term problem when it would take at least 3 months to adjust to a new one wasn't attractive). they did tell me to come back a few days later and it ended up being in stock. tbh, if it's that the pharmacies don't have it in, i don't know that a private consultancy appointment would help that much. can your GP's surgery give you any advice, or maybe the PCT would be able to find where they have some in stock, perhaps in some hospitals with epilepsy units or something like that? how soon before you run out?
    :happyhear
  • peachypricepeachyprice Forumite
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    If it gets desperate would it be possible for your consultant to give you a prescription for the hospital pharmacy or a private script for one of the private hospitals in London?
    Accept your past without regret, handle your present with confidence and face your future without fear
  • NickiNicki Forumite
    8.2K Posts
    i had a similar thing with the pill a few years ago - one pharmacist told me to go get a prescription for another one... not helpful (not as serious as anti convulsion medication in any way, but the idea of changing because of a short term problem when it would take at least 3 months to adjust to a new one wasn't attractive). they did tell me to come back a few days later and it ended up being in stock. tbh, if it's that the pharmacies don't have it in, i don't know that a private consultancy appointment would help that much. can your GP's surgery give you any advice, or maybe the PCT would be able to find where they have some in stock, perhaps in some hospitals with epilepsy units or something like that? how soon before you run out?

    A week until we are completely out.

    The reason to see the consultant privately would be to have her medication changed to something different if the Tegretol cannot be sourced. The GP would not do that, and even if they would, we would not trust their judgment on this to be completely honest. The reason to do it privately is that the local paediatric neurology department is massively backlogged, and even urgent referrals/complications take a minimum of 4 months and often much more. We've ended up seeing her NHS consultant in her private practice for this reason more than once since she was diagnosed last year, and both the consultant and we are happy to do it that way.
  • You should be able to succesfully argue that you should always have at least two bottles - one in use, and one spare - what if you have only one, and it gets dropped on the floor?

    I've been told to always have spare insulin in the house + what I have in use in case eg the pen breaks, the cartridge gets broken, my bag with the insulin gets stolen. I would have thought the same applies to epilepsy medication as you shouldn't just stop taking it.

    Something that might be more useful to your current situation - if you go to Boots they might be able to ring other branches to see if anywhere else has it in stock, if they don't have it there?
  • From http://www.epilepsysociety.org.uk/Forprofessionals/Questionsandanswers/Anti-epilepticdrugs :

    "Questions from healthcare professionals
    Q: Are you aware of any problems with the supply of tegretol liquid? I have heard that it is "long term unavailable".
    A: We have contacted Novartis who confirm that they have stocks of tegretol liquid. If any pharmacy is experiencing problems in supply, they should contact Novartis who will supply them directly (rather than via a wholesaler).
    November 2011"
  • Hiya, you should get your pharmacist to call novartis direct, manufacturers usually have an emergency stock for situations such as yours, alternatley, if it is a large chain they should email all of their other stores I'm sure there will be some stock somewhere in the country. hope you get it resolved asap.
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