Multiple Sclerosis Medication Rant – HELP!

Disability Multiple Sclerosis

Been a tough month. Pain levels have been high. Higher than normal, I think. Not sure why, but like last time, my skin has been super-sensitive, making tasks  much harder!

But what I really want to talk about today, is the problems I am having with delivery of my medication.

Each month I take a delivery of Rebiff, a beta-interferon that reduces the number of relapses I have. Every three months, I take a delivery of Fampyra, which is my main med, which allows my to have some function – enough to transfer from a wheelchair to an office chair or my car, nothing major, but it enables me to go to work.

I’ve taken these for many years without any problems. The way it works, is that the hospital raise a prescription each month for the meds (which can only be dispensed by the hospital) which is then sent to the delivery company (used to be BUPA). I get a phone call from the delivery company (DC) to let me know when the delivery would be coming, and then I get the delivery. If I’m ever not in, they have instructions to deliver to my pharmacy, which is just across the road from me, who will then drop it to my house at the end of the day. Sorted.

Three years ago, the NHS decided to change suppliers of this service to another company (not BUPA). Since then, this whole process has become the most stressful thing ever! Every three months I take a delivery of Fampyra, or at least I should. Every time a new delivery date rolls around, there are always problems. Not all, I must add, the fault of this company. Sometimes the hospital doesn’t send the prescription through to them in time. Sometimes the company say they haven’t then the hospital says they have and I have two weeks of them arguing who has or hasn’t sent the prescription. Either way, it leaves me without meds.

This month was a new low for me. Everything that could go wrong did. Here’s the sequence of events:

  • DC tells me the hospital hasn’t sent the prescription.
  • I call the outpatient pharmacy at the hospital. They don’t know what I’m talking about. They give me an extension number for the MS consultant.
  • I call the MS consultant only to get a recorded message telling me this phone is not manned.
  • I ring the main switchboard at the hospital and say ‘can you please help me, I am trying to track down a prescription that- ’ before I have a chance to explain what I am looking for, he transfers me to the regular pharmacy who have no clue what I’m talking about.
  • I call back to the switchboard and ask them to let me finish my sentence before transferring me.
  • Switchboard offers to put me through to the MS consultant’s secretary. I ask what the extension number is, and he gives me the unmanned number again. I inform him and he gives me another number to try.
  • I try this new number and get his secretary who tells me that my prescription has just been sorted but can’t tell me if it’s been dispatched yet. She gives me another number to try.
  • The number gets me to the neurology team who tell me they can’t help me. I will need to try one of the MS coordinators. I get a new phone number to try.
  • I call this number and get an MS coordinator, although she tells me she is only covering for someone. BUT she helps me and confirms that the prescription has been sorted but can’t confirm when it will go to the DC, I should call them tomorrow (now I have 3 days of tablets left).

So that’s the hospital, and let me say all the people I spoke to in the above phone calls were nothing other than helpful.

So that’s the hospital, and let me say all the people I spoke to in the above phone calls were nothing other than helpful.

Onto the delivery company…

  • DC calls me up with a delivery date for one of my meds (Rebiff). Good, but not the one I’m about to run out of.
  • What’s worse is that they decide to call my wife, not me. Strange, after 3 years they would start doing that.
  • They tell me my delivery date, but now, if I’m not home, they will no longer deliver to my pharmacy, only to their own high street pharmacy.
  • I call them up to check and this is what they tell me:

As part of a new policy, they will no longer be delivering to other pharmacies. Any missed deliveries will have to go to a neighbour. Now, I asked if my neighbour could be across the road and they said yes. I live at number 51 on a turning circle. The house directly across from me is 41. My pharmacy is between 41 and 43. I asked if that was okay. They said no. 

  • Their own high street pharmacy is some distance away from me, making collection difficult. 
  • I call the pharmacy to see if they deliver. They don’t.
  • Back to the DC. They say a neighbour is more secure than my pharmacy, so it cannot go there. I can arrange the delivery to go to #41 or #43, just not the pharmacy in between.

My question to you: is this crazy or is it just me? My pharmacy has been taking my deliveries for several years with no problems. Does anyone else have similar difficulties getting their medication?

My question to you: is this crazy or is it just me? My pharmacy has been taking my deliveries for several years with no problems. Does anyone else have similar difficulties getting their medication?

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14 thoughts on “Multiple Sclerosis Medication Rant – HELP!

  1. I have a similar system in place. A very complicated system that goes wrong on a regular basis. We shouldn’t have to cope with the stress (or feeling like the worst nuisance in the world) just to ensure our health stays on a stable (ish) level… Makes you wonder how many people have actually died due to their incompetence…

    Liked by 1 person

  2. It is crazy – no offence to neighbours in general, but surely a pharmacy is the safest option for taking your delivery. There is always some anonymous person who comes along and changes anything that is working well!

    Liked by 1 person

  3. I have had similar problems with medication deliveries, Steve. I now collect both my children’s medications directly from the pharmacy which is a pain but at least I can control it. Not sure it that is an option for you.

    Like

  4. Hi, Steve. I’m in the US, so it’s a little different, but it was a nightmare when I first was prescribed my interferon (Plegridy) trying to get it coordinated with insurance and nurses. I hope they get your troubles sorted out soon! MS is trouble enough without the added stress of playing phone tag.

    Liked by 1 person

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