Hello folks I’m new to the forum and wonder if you can help with the following problem involving my son who was diagnosed a year ago. He is currently serving with Royal Navy based in Portsmouth and is under the care of Southampton NHS Trust, unfortunately there was a delay in him being prescribed medication as the NHS Trust expected Royal Navy to pay for the drugs (Absolutely no idea why) which they refused to do. After 6 months of back and forth the NHS trust prescribed Tecfidera and he recieved 2 weeks supply which was delivered to him by courier. Since running out over 2 months ago and despite promises from his Consultant and other medical staff he has yet to recieve any further medication. He has been told that all Tecfidera is dispensed by courier from a depot in York and that the couriers/ suppliers are to blame, I wondered if anyone has had trouble sourcing this medication as I find it difficult to believe that it is such a palavar to obtain it - Many thanks in advance,
No help directly but Tecfidera is distributed by specialist pharmacies on the direction of major MS Neurological centres and this seems to cause problems and delays.
This is partly down to agreements needed about the cost. I have not bottomed out the funding as it is expensive and relatively uncommon so is funded in a different way to GPs prescriptions.
I was slow in starting Tecfidera (my MS nurse is not directly associated with MS Centre) and when I restarted after a pause it took a long time and even longer to sort out the fact they appeared to be delivering to two different schedules concurrently!
My supplier is based in Burton on Trent, but deliver from Bristol.
This needs to be sorted out with the Consultant. My MS Nurse did this, but it was very frustrating as there was no clear chain of command.
I have similar problem with my meds, it was a real problem to begin with as only a few places are licenced to hold and distribute the drugs, but when thats sorted so long as they have a prescription there isnt a problem. There have been a couple of occasions when they havent had a prescription - that caused a delay.
Can you contact the supplier of your Tecfidera? find out from that end where the problem is?
Thanks for the reply, his nurse is tearing her hair our at the moment trying to sort things out. His home address is Aberdeen and he is still registered with our local GP, but unfortunately they know nothing about his diagnoses as it was all dealt with in Southampton. We are currently trying to obtain a copy of the prescription and have his records sent to our GP to hopefully expidite things and have him referred to a Consultant in Aberdeen.
A nightmare, but things always to take longer than they should because it is less time critical than some other diseases. If there was a government target………
Hopefully it will be sorted before too long.
I had a nightmare with mine when the provider changed, but once it’s up and running it should be ok. In order to do the prescription I have to have blood tests every three months, has he been told this? I know that my prescription doesn’t get renewed unless I’m up to date with the blood tests which are my responsibility to book in. Good luck and really hope he gets it sorted soon. It’s so stressful and I massively sympathise, I ended up on the phone to the drug company in tears more than once!!
Blood test intervals are variable. More frequent at the start and then less so. COVID has tended to space them out further. However, if they pick up a concern they will monitor more frequently. Your MS nurse should keep you informed but the bloods will probably be taken at the GP and you will need to book these.
Another point is the specialist Pharmacist is likely to ask for a stocktake on your capsules to check you are taking them. Mine aim to resupply at two weeks into a box. Used to work fine but there is now a new computer system and a promised app that has not arrived. Very long holding time on the phone and inability to fix the problem (luckily oversupply rather than running out).