To make a formal complaint

[Devon50]

I have a fairly rare vulval skin condition which causes atrophy and inflammation of the skin in the genital and seal are making it itchy and sore .
The treatment is affectionately known as clob which is ultra high potent steroid. This needs to be used weekly for life.
There is also another medium potent steroid which can be confusing as names are similar.
I guess my first issue is that the practice wouldn't put the correct steroid on repeat despite one of the GPS prescribing it. According to records somewhere along the line the order was mistaken and the lower potent one was issued. This wasn't a real issue and I didn't clock it whilst I was still ticking along on maintenance.
Then in August I had a horrendous flare. I requested a referral to gynaecology as I had become atrophic that sex was impossible and even clitorial touch caused pain. I was examined and the referral done. No attempt was made to check what treatment I was on. A week later still suffering I had a telephone conversation with another GP who. Old only suggest battier cream. Ere like I Haven tried that before. Still no checking of the treatment .
3 months of pain and hospital give me right cream. Relief was immense.
After several attempts I made appointment to discuss and GP came up with all kinds of shit like we don't put steroids on repeat. don't prescribe strong ones. They are almost the same Look they are both 0.5% strength.
But actually a colleague did prescribe it but it got lost along the way
So is a formal complaint the way to go or am I making too much of a fuss.

I understand why you want to complain.
Perhaps write a letter to the Practice Manager clearly outlining the chain of events and the impact it's had on you.
Hopefully this will prompt a checking system to ensure this doesn't happen again.

But I think you should then put this behind you. You can't change what happened. It won't make things better. You'll have made your point and retained a relationship with the practice.

And I must say this sounds like a really distressing condition. I'm sorry you live with it. I hope being back on appropriate medication makes life easier for you.

Thank you. I know I need to let it go because it is eating me up. The trouble is the errors are constant. I have had two similar mistakes in the last year. One where photos never arrived and no one chased so treatment was delayed and another prescribing error resulting in symptoms remaining for longer.
Tbh not really sure if I want to maintain a relationship with this practice right now.

By that thsnk you for your lovely reply @Gazelda .

I’d agree prob write explaining events and asking for a reassurance that it won’t happen again. Assuming it’s LSA you have it’s not actually all that rare and every female GP will/should have a good handful of patients with it. It’s best practice to prescribe dermovate (clobetasol) and eumovate (clobetasone) by trade name for this very reason- you should be able to ask for that.

I think you could certainly complain to the practice manager, yes. I suspect you'd probably just get a bland apology in reply, but it will mean they're less likely to make a similar mistake again so it's worth raising it with them.

My DP has a (totally different) condition that requires regular use of a very strong steroid (a nasal spray in his case) and he can't get it on repeat prescription either. He still goes to a GP miles away from where we now live because he's had so many issues before that he's scared to lose the continuity of his treatment.

(Is your condition lichen sclerosus, by any chance? A close family member of mine has that, and eventually she got referred to a specialist consultant that she has six monthly appointments with. Whatever your condition, though, it sounds like you'd be better off under the care of a specialist on a more permanent basis, whether it's a gynaecologist or a dermatologist, so I hope that's possible for you.)

Yep it is LS. Now under consultant and not going to accept being discharged. Took me nearly 1o. I was prescribed dermovate by the GP who knew ehat she was doing bug it got watered down to eumovate at some point.

Definitely complain. I have LS which is under control. I use it twice a month. It took me a long time to find a gyne who understood how to treat it.

You need to check whether they are allowed under their CCG rules to put the cream on a repeat template as actually, I believe that in. Some cases some high dose steroid creams are advised against being on a repeat. I don’t know about this cream itself but I know this can be an issue for some patients

Complain. Your condition isn't that rare and they have made an error.

10 years

Yes, complain. Something in the way they have organized their work process has caused this mistake and it very likely could have been avoided, so I would expect them to make sure they put measures in place to avoid this from happening again to you or anyone else. Perhaps you could also share this story with your pharmacy so they know to check with GP if they see a patient with a similar issue and medication who suddenly gets a different cream.

You need to check whether they are allowed under their CCG rules to put the cream on a repeat template

Fair enough @Menora but if they couldn't they should still have ensured they ordered the right one when I requested it and especially when presenting with a flare that wouldn't subside with the cream I had.

Also I think I probably should have been under consultant care initially. I had a biopsy but thst was it.

@Menora it us now on repeat after I chased following hospital letter telling them they issued wrong one. Strangely this letter is now missing.

Initially they did nothing.