Feeling Frustrated and a little worried so having a sound off

[CDreamer]

I spent a lot of time yesterday trying to find out what to do if my pharmacy cannot secure a supply of medication which is fundamental to my treatment of Myasthenia, not the AF, although the lack of treatment may affect my hear. The med is Mycophenolate mofetil which is an immune suppressant, most usually used after organ transplants to prevent rejection.

The story so far:-

Order meds through the excellent NHS app and expect my excellent pharmacy to deliver in 3-4 days time. I have about 10 days supply and my GP usually prescribes 400 at a time. After a week of nothing and now only 3 days of supply left I drop my husband off at the Pharmacy to collect them. He comes back with 100 tablets and the story that they are unable to secure anymore. Now I’ve had this before with another essential med and the CEO of the charity which supports Myasthenia had to go to the Sec of Health to get him to allow the NHS to prescribe the Patented version rather than the generic version - there was a cost difference of £8 per bottle but I and other people relying on the med were stuck between the GPs and the pharmacy and NHS. Production of the generic version had ceased in the UK for maintenance so the only sources of supply were branded, imported versions - hence the cost difference. The NHS refused to recompense the pharmacies for the £8 difference, the GPs were told by the CCG’s not to prescribe the branded version and we Myasthenics had to resort to sharing supplies. Thankfully not for long as the Sec of Health relented and GP’s were allowed to prescribe the branded version.

It seems this is a different scenario - production seems to have ceased. There have been reported problems it seems in US and in Australia from Feb - July this year but nothing that I can find reporting a difficulty in the UK, other than my personal issue.

I posted on Myasthenia UK FB page and no one else has so far reported a problem so I am left wondering if it is just in my area, my pharmacy - who uses 3 of the big wholesalers. I have now 50 tablets left which will last me another week.

What to do? Pharmacy - ring your GP.

GP - oh you need to ring a different number for Prescriptions.

Prescriptions - oh - need to speak to your GP.

Me:- Appointments told me to ring you.

Prescriptions under breath: that figures.

Me - so what do you suggest? Can you put a message for my GP that they will see in the morning?

Prescriptions: OK but she won’t be able to do anything to change your meds without your specialist say so.

Me: OK - I’ll ring the specialist’s sec.

Prescriptions: If you get them will you ring us back and tell us because we can’t get through.

Me: O ...K

Ring specialist Sec direct line - thank goodness I kept the number because it’s now not on the hospital web-site!

It’s an answer machine. I leave a message, as requested.

Now all this is after having to listen to the NHS COVID message 4 times now (I rang the main hospital number first to get the Sec no but got too impatient to wait to be answered and remembered I had stuck the no away in a drawer in case of emergencies. By the way - if you have this problem I learned that you can circumnavigate the message by pressing the # button on your phone! It works!

3pm yesterday afternoon, no response from anyone.

I ring the pharmacy again. Ring the hospital again they say.

I ring the Sec again and leave another message.

4.40p,m Sec rings back to say that she had received my message and had contacted their pharmacy who had some supplies but as it came in so many forms and some people could not have certain brands she need to know exactly what I had, get back to the hospital pharmacy, get hold of my specialist to get him to write a script - if the pharmacy has the right form and enough spare stock.

Moral of the story:- As patients we cannot sit back and assume everything will just happen. Names fall off waiting lists, Medications have interruptions to supply chains and we need to be proactively - Polite and Persistent.

But golly, it’s really exhausting and not a little stressful! Oh, someone told me that stress is bad for my condition (TIC).😱

[Hidden]

My view is that if you're on medication that is truly essential, like some of mine, then 10 days supply is FAR too low. Either order much earlier if you can or somehow get a little stock built up. I have an essential heart drug and managed to build up about 1 month's stock as a minimum. I did that when I changed surgery and the new surgery didn't take into account anything from the last in terms of timing.

[CDreamer in reply to Hidden]

I tend to agree with you and my GP is very good about that - unfortunately the NHS App isn’t and you can’t order meds before the date it specifies. I’m just about to order my anticoagulants - same problem. Even so, if there is there is an interruption to the manufacturing of the medication - then what?

[Stinky1953 in reply to CDreamer]

My GP has its own on line prescription re order system which allows me to re order when I get down to a months supply.

[Crystalbowl]

That is some story, CDreamer! I hope you get it resolved satisfactorily ASAP. It is worrying as we have heard that there could be disruption to medical supplies if we do leave the EU with no deal (and maybe even if we do manage to negotiate a deal). Good luck and thanks for the advice to keep on top of things ourselves.

[CDreamer in reply to Crystalbowl]

I don’t think this has anything to do with Brexit but I do think there is concerns as to what is may happen. Phoenix for instance is one of the wholesalers and that is a European based company - Germany I think.

Take care and keep safe.

[Crystalbowl in reply to CDreamer]

Yes, I was only flagging up concern that your problem at the moment about supplies could escalate in the near future due to Brexit. It is interesting that different surgeries use different apps. Mine uses the MyGP app. I negotiated with my GP before lockdown to be able to order 2 months’ supply each time as I seemed to be ordering repeats so often when it was only a month. This was a boon when lockdown hit and, so far, I have had 2 months’ supply ever since. I am hopeful that the pharmacy is going to deliver my next order today or tomorrow and I will see what I get this time.

[CDreamer in reply to Crystalbowl]

My GP is great & will prescribe 3 months if I ask her but we were asked not to unless essential ie travelling. GP used to use SystemsOnLine but actually a really like the NHS app - more secure I think & easier to use on mobile devices.

Trouble is when manufacturing stops it doesn’t really matter - there are no supplies.

I’ve been on FB page & learned others have similar & worse difficulties.

The whole system is cause for concern & who knows what will happen if there is a US trade deal. Time to emigrate to Ireland me thinks.

[Jalia]

What can I say ....unbelievable ! A ' lesser' person would not have been able to get this far . Persistence pays off but very stressful for you all the same.

[Hidden]

Feel for you CD, hope you get it resolved soon. Fortunately you have the tenacity to fight your corner (even tho you shouldn’t have to). There are so many who are unable or cannot and with Brexit looming I fear it will get worse before it gets better....good luck, hope you get the medication you need.....

[BobD Volunteer]

So sorry you are having problems but this is nothing to do with Brexit but a normal function of logistics and the supply chain. A year or so ago everybody was panicking about shortage of flecainide and before that is was something else. Scary indeed but we only ever hear about the drugs that affect our particular problems. I do hope it resolves soon but as you say we need to be our own advocates in such matters. Forza CDreamer!

[CDreamer in reply to BobD]

C’est la vie Bob. You are right. When we think of the lack of medical care in other countries we can only be thankful ours, on taken overall, is relatively efficient in normal times.

[jeanjeannie50]

If my pharmacy tells me they can't get the drug I need, I ring the maker of it to ask if there's a shortage. If there is, I ask when it will be resolved. If they say there's no shortage, I then ask which wholesale suppliers have it in stock so that I can tell my pharmacy.

Life is never easy is it!! All designed to drive you mad!

Jean

[CDreamer in reply to jeanjeannie50]

I’ll bear in mind Jean - but seems we need to do their work for them?

[jeanjeannie50 in reply to CDreamer]

Yes, I agree!!!

[Desanthony]

OH I know how that feels like

[CDreamer]

Update. My GP practice rang me this afternoon to say the pharmacy had tracked down a supply which will be delivered tomorrow - 👍phew.

Thanks for all your support & suggestions.

[wilsond]

This is very worrying ..and frustrating ! I worry about people who are less able to be proactive .

Seems very disjointed these days between GPs ,pharmacies and specialists .

Sign of times I suppose.

Now....relax!!

[Tricia239]

What a nightmare but good for you for your perseverance. You made me laugh, sympathetically, about listening to the Covid message 4 times - having relatively recently relocated to Wales I find it quadruplely ( is there such s word?!) frustrating having to listen to it in Welsh as well as English!

[CDreamer in reply to Tricia239]

Try pressing the # key on your keypad - it circumnavigates that message & gets you through to the next step - in our surgery ANOTHER recorded message - tip learned through our U3A techies, works here.

So - 90sec initial message circumnavigated - can’t dodge the second - another recorded message saying they are aware it’s difficult to get through ( irony seems to be lost on them) get to 3 rd message - ‘You are now number 5 in the queue.......’.

And there is an increase in mental health issues?! Mmmmm.......... I wonder why!

[Coco51]

Well done!

[Tricia239]

Thanks, I will certainly try that. And, too right about mental health, I don’t know anyone who isn’t driven insane by these horrendous recorded messages. Theoretically there should be no need for Government handouts because everyone one is dealing with an exceptionally heavy work load, so profits should be booming! I’m joking, of course, but so ?????? irritating.

Thanks again.

[Singwell]

EEK. That's an awful hassle and so so stressful. Well done you for being so determinedly proactive. I hope all will run more smoothly now as a result. Fingers firmly crossed for you.