Last reply 5 months ago
Run Out Of Meds

This is a little shouting into the void, but also a small cry for help.

I recently moved from Brighton to Wolverhampton which obviously, on top of everything else that’s stressful about moving, included the whole transferring hospital thing. It’s the first time I’ve done so since being diagnosed.

Long story short, there’s been some communication and admin errors. I run flush out of Tecfidera (my MS medication) on Friday, and despite the new dispatch company having had all my details since last Thursday, they have STILL haven’t contacted me to arrange delivery of my new ones.

I’m likely to be going without any medication for a while until they can sort this out. I’m scared because of the reactions my nurses had whenever I missed even one dose in a month (by accident of course). I’m scared I’ll relapse and suffer some kind of horrible worsening of symptoms which wont go away. I’ve been so lucky so far, I just get the fatigue and a little bit of sensory loss, but I’m frightened I’ll get something much worse if I am off my meds.

So yeah… I guess this is mainly shouting into the void. I mean if any of you are in the UK, are on Tecfidera and willing to help a fellow sufferer out by sharing a week of emergency supply that would be nothing short of a miracle… however more likely if anyone has any support or comforting words those would be most welcome.

Note: I have already contacted MS Society Helpline, Tecfidera Support Line, my Neurologist, my Nurses and Biogen who supply the meds. My GP and pharmacies can’t help. So any advice based on these avenues is probably surplus. Thanks anyway 🙂

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5 months ago

Hi @nemily and welcome.

Life could be so simple, yet it continues to go pear-shaped. It’s no wonder the NHS costs so much!!

I’m gob-smacked that you’ve been unable to get any support in your hour of need. That is hardly the professional attitude you’d expect of our caring health service.

I’m tempted to seriously rattle the cage of the delivery company. You need to speak to someone of authority and demand that they resolve the situation for you. But, please remain polite and courteous at all times. Hostility never helps.

Also, contact the Patients Advice and Liaison Service (PALS) at your new hospital. They might want to own the issue.

At a higher level, you should also write to the Chief Executive of the Hospital Trust asking how this fiasco could happen in the 21st century. Mark the letter with “CC: Department of Health”. I’ll leave it to you whether you actually want to copy the Department of Health in, but the effect will be good.

Hope this helps resolve the issue. But, try not to over-stress the situation, as this could provoke some MS activity.

5 months ago

@nemily, joking apart I’m only in Stoke-on-Trent, use Tecfidera myself, Wolverhampton is less than an hour away, I’m on 240mg, have a months spare just in case of accidents/non delivery etc., I know one shouldn’t do this, but if your really concerned, send me a PM and we will sort something out!👂🤞🥊

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