Good morning on this shockingly soggy day 😂. Wall to wall rain for the day.
I've had so many problems with my GP over the last 4 years after a change in management. They were great before this change I have to say. Issues ranged from not being listened to, to not being able to get an appointment for a second opinion without an argument. I was repeatedly fobbed off over the peri menopause when I couldn't function and it took around 5 months of misery before a competent nurse actually repeated the high inflammatory markers (previously taken) and suspected PMR. It was a catalogue of disasters. What makes it worse is that I was describing classic PMR symptoms and they had received a high result and didn't put the two together.
When I say every interaction with the surgery was painful, it really was. It came to a head two weeks ago when after an hour's phonecall the week before to arrange (and argue) about my MTX blood monitoring that they had agreed to do, they messed up once again.
I immediately went home and rang another surgery 3 miles away that I've always heard good about. They agreed to take me (sobbing in frustration down the phone). It's been seamless. Repeat prescriptions set up. All blood monitoring sorted. Smiles and polite reception colleagues. Can't fault them. I wish I had done it months ago but I was scared to moved during active treatment and monitoring. I shouldn't have worried. I've already sent them an email to thank them.
We deserve to be taken seriously and not to be spoken to like school children. We deserve GP's who will work with us and not 'do to us'.
If your surgery is similar and you know of better options, take the leap, it's such a relief and another stress that we don't need, gone.
Apologies for the huge rant. I feel so much better now. 😂
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Coffeebeans
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I'm pleased that you're getting the support that you deserve.
My surgery has always been brilliant, but with the pandemic everything has gone online and it's now incredibly frustrating. In recent weeks:
- they have refused to prescribe 2.5mg prednisolone - to allow me to reduce my dose - until they received a letter from the consultant,
- they will prescribe only 56 prednisolone tablets (2 boxes) at a time. This is enough for only 18 days, at 15mg/day, but they will only issue repeat prescriptions monthly,
- they will only accept requests for repeat 'sick notes' within two days of the old one expiring, but the request for a new one may take up to 5 working days.
Individual doctors are very good and I have heard negative things about all of the practices in the area so I'm concerned that I may jump out of the frying pan and into the fire if I move.
Oh dear, I see the issue with the repeats - that just won't work at all and I'm amazed they can't see the logic either.
I'm also surprised they aren't keen for you to taper without a letter - everyone is so keen to get us off this stuff it seems strange.
It was a big worry of mine that I would also jump from the pan into the fire but it doesn't seem to be the case but it's a risk. I suppose it helped me to have heard good things about my new one from people I trust and who have had interventions recently. There are also the online GP reviews but I don't find them as helpful. It's usually the people at either end of the spectrum.
I know, it's all bonkers! I just feel that it could all be sorted easily if I could just talk to a GP rather than repeatedly communicate via online forms, especially as my experiences have been good for the 25 years that I have been with the surgery.
I have a friend who is a health visitor locally, I might have another chat with her about the local practices.
An appointment with the GP who is head of the Practice, can sometimes work wonders.
Or a written complaint to the Practice Manager, with all you have listed above.
PMR is normally dealt with in Primary Care, did you have a problem with PMR which then meant a referral to the Consultant?
I would be calling the Consultant or send s/he an email about needing a letter urgently to the practice re shortage of Pred.
The surgery I have been with for 23 years, has also gone 'pear shaped' since retirement of the head GP and Covid.
However me, being me, had it out with them in particular about repeat prescriptions. I pointed out that if I needed the medication to control the illness........I needed it for 4 weeks as they also only do 4 weekly prescriptions for long term meds. It worked.
No, my PMR wasn't diagnosed by my GP. After months of online correspondence and a terrible F2F appointment with a locum, who claimed that my rugby ball sized knee was the same size as the other one, my osteopath suggested that I should go for a private MRI and rheumatology appointment. It was actually the osteopath who suggested PMR, this was confirmed by the consultant who also diagnosed RA in the rugby ball sized knee.
Most will only do monthly repeats (not all, before everyone disagrees!) - but it's not rocket science to work out how many tablets that will be - my GPs used to write on prescription - for example - xx tablets @5mg, xx tablets @ 1mg.
Then as I reduced, I advised what I needed and he amended. it's called common sense and patient service!
On another point did see this on fb this morning from my surgery -
"We are currently looking for a Patient Services Administrator to join our friendly admin\reception team. If you have (or you know someone who has) customer service experience (and desirably NHS experience) please visit our website for full job description and details on how to apply;..."
Not sure I'm happy that customer services experience comes before NHS experience!.. but in general they are a good group.
Monthly/4 weekly repeats make sense - and, as you say, it's not rocket science to work out how many pills that will be. I have monthly repeats for my migraine pills and three-monthly for HRT.
They've managed to put MTX onto a 4 weekly repeat so I really can't see why they haven't managed it with the pred. Perhaps because the intention is to decrease? Who knows? It's certainly beyond my ken.
Remember that 4 weekly repeats shifts the need ever earlier in the month - like the daft blister packs!
It's daft - we aren't in a position to stop them suddenly or forget to take them for long. Part of the restriction is to save money by patients only having limited numbers of tablets to have to throw away having left them in the cupboard! I bet there is a very high level of compliance amongst PMR/GCA patients ...
It's ridiculous, or an I missing the point, when I was on MTX recently (now stopped) blood test taken by nurse, and appointment made while sitting with her....I order my Pre d online....and email about anything, and always get a prompt reply......(I am in Norfolk too)
My Pred is not on repeat, but I just work out what I am likely to need for about three months, (remembering that everything comes in 4 week doses) email it to the surgery, marked attention for the doctor and she does the prescription. Same for the Omeprazole. Everything else I take is on repeat. Can't remember when we last spoke but she always says ring if I need to.
It's almost impossible to speak to a GP at our surgery atm. Everything is via an online form, they only ring you if they have to. I'm not sure what would happen if the only information one gave on the form is that one wanted a GP to ring.
I think maybe they are hoping many people will go to the walk in centre in Norwich....I know a receptionist who works there doing 12 hour shifts....she says it is heaving all day long!.....I wonder why....😏
I've just read a post on the lupus forum with a similar tale but about the rheumatology clinics - they had been told repeatedly "there are no clinics", which it turns out is palpably not true, and the decided impression is that there are people sent "out front" to discourage any close contact between patients and doctors. Who is to blame seems unclear - but what is very clear is that it isn't good enough and there are going to be a lot more very sick people arriving at already overloaded (again) A&E departments who should have been dealt with by their GP weeks before ...
My daughter (in A&E) saw a patient a few days ago with frank haematuria - whoever they saw at the GP/walk-in centre (not sure which) had decided it was a UTI and handed over a prescription for the antibiotic nitrofurantoin. Even I know that is a 2 week referral ?ca. He came back to A&E with retention and by close of play had been seen by the Boss Urologist who happened to have clinic that day and was on his way to the Big Hospital for management so even quicker than referral really. But what on earth was the writer of that prescription thinking?
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Ignorant GP
GP 9 Rheumatologist 0
update on confused by Rheumi consultant 
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