I have had a call from my lupus nurse to say my gp has written to them to say the ccg have stopped them prescribing metoject and that I will now have to get it from the hospital.
All fine except the hospital don’t do the metoject pens and only do pre filled methotrexate syringes which I didn’t get on with because of problems with the grip in my right hand making fine motor skills difficult. Plus my local hospital is a 25 minute drive each way and is brand new with bright lights and glass everywhere that sets of my photosensitive reactions and is why I’m no longer seen there. With the best will in the world even where the prescription is done in advance it’s a hospital pharmacy which gets very busy so I’m going to have to wait to pick it up and I’m going to end up having to take the entire afternoon off work to go and get a prescription to recover from the inevitable reaction it causes.
That’s without factoring in if I can’t drive or the weather is bad or times like now where I’m running short on my Dundee cream that the ccg also won’t supply so haven’t been able to go up there to deliver my used needles bin because I don’t have enough cream to cover all of me without running out for other days and risking being unable to leave the house or go to hospital appointments.
The gps have told me to write to the ccg and explain the problems it’ll cause but I’ve already been through this with the Dundee cream and they dug their heels in on that as they just keep repeating that I can get it from Guys without taking into account my unique circumstances so I can’t see them budging when there is a hospital 15 miles away for me to use.
Does anyone else have any experience with this and is there any advice of how to deal with the ccg to get this overruled? I know to anyone else it doesn’t make much difference but anything that makes life that bit harder just gets too much after a while.
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Mifford
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Oh but in much better news ... I picked up my motability car last week and oh my god it makes life sooooo much easier. The automatic is a dream for my left hip as it’s just started to play up again as the last steroid injection is wearing off and I’m so much less tired from the effort of driving it. Getting in and out is now much improved because it’s higher. I’ve got a power steering ball thing to make the steering lighter. I’ve just got to sort the uv wrap on it and I’ll be all sorted. The fight to get to this point with the DWP was a nightmare but this is (almost) making it worth it. It’s not even a huge upgrade on what I had before but such tiny improvements have such a big impact - I just wish there was a way to get the dwp people to spend 5 minutes as me so they could understand that
I might have imagined this,but I think I read somewhere if you have a dispute with with a ccg you can request a meeting with a representative to present your case.
Maybe you could investigate that route?
Your GP Practice Manager should have information on how to appeal a decision.
If you do get a meeting.....turn on the agony....people who sit on these committees often have no idea of the real difficulties you go through....they appear to just work by numbers!
My practice manager just told me I could write to them if I wanted to. I’ve had 2 bad migraines this week that hit out if the blue which is a new phenomenon so am going to make an appointment with my gp to look at getting that fixed so will bring it up then - I’ll ask her about the meeting thing and ask for her support while I’m there. A meeting sounds good to me though - they have to view me as a human not just a statistic that way so thanks I’ll certainly push this route x
Sorry about the migraines...... really debilitating
It appears to me the individuals who sit on these committees start out with the premise that everyone being prescribed RA drugs is fit & healthy & can get around easily....they don't appear to consider why we are taking the pills or injections....as you say manual dexterity is a major problem with injectable drugs.
They don't consider the adverse effect the decision will have .......doesn't occur to them that we come in all grades of mobility & physical ability. They just get an idea in their head that changing something will save money.....& don't think any further......I do hope your Practice Manager is a good source of support.
It’s a route I may have to go down but I tried to make an appointment with her over the suncreams and rather than meet me to get the whole story she sent a generic letter to the ccg based on minimal information and then simply accepted their response. I guess she tried to help but by jumping the gun without talking to me she was about as useful as a chocolate teapot! If I did it again I think I’d make an appointment at her surgery and not give her too much info up front ... maybe then we could discuss why she has consistently voted to reduce benefits to disabled people and against improving equal rights over a cuppa 😊
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