A moan and a request for advice...

[Marijo1951]

First the moan: I sent my online repeat prescription request to my GP on Wednesday asking for Prednisolone 5 mg and 1 mg, Methotrexate and Folic Acid. I went to the pharmacy today and was given the MTX and FA, but no Pred. The pharmacist checked and the doctor hadn't asked for them. I can guess why - I have about 8-10 days' supply and s/he was able to work this out and decided I mustn't be encouraged to stockpile. At this time, when we're being implored to avoid going out whenever possible, why couldn't I be trusted with pills for a few extra days? I don't know whether I'm considered an idiot or a sneak trying to put one over on them, but I find this intensely annoying and patronising.

Request for advice: I last had my MTX blood test on 3rd December. I'm supposed to have one every 4 weeks. Normally either the hospital sends me a letter advising me I need a blood test, or I phone the Rheumatology Dept and ask somebody to put me 'on the system'. I then book an appointment online. I haven't received a letter since my last blood test and both the telephone extensions that I can normally use (the Rheumatology nurses and the department admin) are now out of action. Of course I know that the Royal Free is treating a lot of COVID patients and is also one of the NHS's COVID vaccination hubs, so no doubt many of the staff have been redeployed. I can't simply book an appointment and just turn up at the Blood Test Clinic, because they need to see online that a test has been requested. I've considered 2 things:

1. Making an appointment, arriving a bit early and going to Rheumatology first and asking them to put me on the system. However I'm wary about wandering around a hospital in the current circumstances.

2. Approaching my GP with my dilemma, but all their requests for blood tests automatically go to our local hospital, the Whittington. I'm not sure they could get their heads round actually having to produce a bespoke request.

Unfortunately, when my doctor first decided to refer me to a rheumatologist, the Whittington didn't have an appointment available for some weeks, whereas the Royal Free (not that much further to travel) had one quite soon, so we went for that one. Of course, if the wonderful NHS IT system, on which squillions of pounds were wasted, had actually worked as intended, any part of the NHS would be able to deal with any other part without difficulty!

Anyway I'll be glad of any comments or useful advice.

[SnazzyD]

Why can’t the GP raise the request? When I was a practice nurse 4 years ago we did all the Methotrexate monitoring.

[Marijo1951 in reply to SnazzyD]

Well, maybe he can. I'm psyching myself up to email them for help despite being so annoyed with them. As I say there is a bit of a hitch as they don't normally deal with my hospital, but of course there's no really good reason why not.

[MrsNails]

My GP’s Surgery does my Blood Test Forms for MTX - l used to have mine done monthly but am now every two months because of Covid.

I used to go to the Hospital but since the first Lockdown l’ve had them done at the Surgery.

Ring Reception after 11am (after the rush) & ask her advice on the current procedure as they have altered quite a few things.

Also ask if the Surgery has an ‘In House Pharmacist’? If so, ask to speak to them about your Prescription.

MrsN

[Marijo1951 in reply to MrsNails]

It's interesting that you've been told that the tests are now every two months. Maybe that's the case here but nobody has thought to tell me. As I said to SnazzyD, I'm going to contact the GP for advice and - hopefully - help. I already know that they don't have an In House Pharmacist.

[MrsNails in reply to Marijo1951]

I discussed it with my Consultant when we first went into Lockdown & he said go to two monthly but if any of the results were not good then we’d return to monthly.

But even with the increase in my Dose l’ve remained two monthly....

[SheffieldJane]

I can email my GP and request a Tocilizumab monitoring blood test ( although alarmingly I was asked what they should request to be monitored specifically, within the test, the first time). This saves me a trip to my Rheumatologist in Leeds.I’m loving your rage, have a scream into a pillow first.

[Marijo1951 in reply to SheffieldJane]

It's frustration rather than rage. I hate being treated like an idiot.

[PMRpro Ambassador]

I'd be having words about them withholding the pred - it isn't as if you can stop taking it suddenly! But I would enquire why first - could be someone missed it accidently. Not an excuse mind you!

[Marijo1951 in reply to PMRpro]

Yes, I'm going to raise the matter (gently) in my email later, but I'm pretty sure that it was because somebody decided that I had enough pred to be going on with so shouldn't be trusted with a few extra. Of course, this means another trip to the pharmacy in a week or so which could have been avoided - the sort of thing that should be a priority at the moment. One good thing to have come out of it - I always feel antsy when somebody annoys me like this, and I'm not in quite the right frame of mind yet to compose an email, so had to find something to do. After months of procrastination, I'm actually giving my bedroom drawers and cupboards a much needed sort out.

[PMRpro Ambassador in reply to Marijo1951]

I suppose 10 days of pred is all some people get in the first place. They need an override for long term patients though.

You are achieving what everyone swore they'd do in lockdown????????? And didn't ...

[Marijo1951 in reply to PMRpro]

I still haven't thoroughly revised French, done my Waterloo Station jigsaw puzzle or reread 'Moby Dick'.

[PMRpro Ambassador in reply to Marijo1951]

Well that REALLY isn't good enough is it ...

[maria40 in reply to Marijo1951]

Can you not arrange for your prescription to be delivered to save the extra journey? My pharmacy started to do this in the first lock down without being asked to do so. My daughter had been getting them for me but it was sometimes a bit of a hassle for her so satisfaction all round. It is quite a small pharmacy though.

[Marijo1951 in reply to maria40]

I've thought about this but the pharmacy is literally 5 minutes' walk across my local park so it hasn't seemed worth bothering. Also it's a bit pathetic, but going there and being among trees and birds is quite exciting however brief, given the boring nature of life at present. Still I do know that every step outside is a risk.

[PMRpro Ambassador in reply to Marijo1951]

Only if you get close to someone - 3m is safe enough. I have no choice - nothing online here so have to go shopping. We must wear a mask.

[Marijo1951 in reply to PMRpro]

Talking about masks, it was in the news yesterday that the French government is advising people to wear surgical masks rather than fabric ones. I made a load of masks last year and have just cut out a pile of fabric pieces to make new ones. I'm now wondering if we are going to be told to wear surgical masks and whether it's worth making more. If not, a lot of people are going to have patchwork shopping bags next Christmas...

[PMRpro Ambassador in reply to Marijo1951]

In Germany and Austria the white FPP3 ones are now mandatory for in shops and public transport. Do you make them with multiple layers?

[Marijo1951 in reply to PMRpro]

I use two layers of medium weight cotton or linen. I tried making them with an extra inner layer of finer cotton, but they seemed too thick and uncomfortable. I suspect that our government will make the surgical masks mandatory.

[PMRpro Ambassador in reply to Marijo1951]

Especially since doubts are being cast on how much use surgical masks are for medical staff - which I have said all along

The masks I use (from Vietnam) are triple layer, one layer being particularly dense and supposedly over 98% effective. But I use the front door as much as I can and stay at home. Nowhere to go except the supermarket - such a boon hating shopping ...

[maria40 in reply to Marijo1951]

I do understand; my daughter was giving me a lift to an appointment last week and got lost on the way back. Only ten minutes from home but it was quite exciting to have a little mystery tour after such a long confinement.

[piglette]

My GP organises all my blood tests at primary care level. Also my GP said that their computer system checks against people over ordering and blocks it.

[Marijo1951 in reply to piglette]

I can understand if somebody over orders a massive amount, but not for 8-10 days. Also human beings ought to be able to check these things for themselves rather than relying mindlessly on the system, unless of course the system overrides everything which is quite a scary thought.

[piglette in reply to Marijo1951]

Mine is blocked even if I go one day over. Obviously some people try and get extra drugs such as Tramadol!!

[Marijo1951 in reply to piglette]

Gosh, how crazy. It does sort of explain something though. A couple of years ago, I was going to stay with my daughter in Manchester for a while (when such things were possible!) I ordered enough tablets to last me through, but was only issued with a limited number. I went to the surgery to explain why I'd asked for more and the prescription was issued, so obviously they can use their own judgement.

[piglette in reply to Marijo1951]

I think if you question it they would then do something, otherwise the computer just blocks it and the doctor does not even have to know.

[Marijo1951 in reply to piglette]

Yes, you're probably right. It might explain why I was suddenly issued with Omeprazole a couple of months ago, although I hadn't requested it. I needed it only once ages before to cure terrible acid relux after taking Allendronic Acid. However the computer must have decided it was about time I took some more.

[herdysheep in reply to Marijo1951]

I am lucky in that my surgery has pharmacy within. With new medication, my renewals got all out of sync which couldn't be solved by online repeat request. I am back to placing order by phone and asked if they could slip an extra strip into one of the meds so that I could cut down on the journeys (or number of times of asking someone else) to collect. It worked! My statins are out of sync. I wont push it again - just take them alternate days to catch up!

[Marijo1951 in reply to herdysheep]

Oh gosh, you can't win...

[maria40 in reply to Marijo1951]

I order mine by phone so can explain why I might want or not want a particular item that month. Also useful for times like Christmas and holiday (when we could still have them) when one might need more. They also now understand that as I'm tapering I need I, 2.5 and 5mg regularly so they don't drop off the prescription.

[Longtimer]

All hospitals much have different rules. Have been going to local smaller hospital for monthly MTX blood tests, but nurse at the main hospital said if a GP prescribes the MTX they should do the blood tests.....

[Marijo1951 in reply to Longtimer]

Mine was prescribed by the hospital when I had to go to A&E after a flare up of GCA symptoms, so I've always gone to the hospital for blood tests.

[Longtimer in reply to Marijo1951]

Does your GP prescribe the MTX?....if so could they not take over....if it`s easier for you that is....

[Marijo1951 in reply to Longtimer]

Yes, they usually prescribe it and they, quite reasonably, also like to see the blood test results every now and again. I suppose they could send me for the blood test to the local hospital and then send the results to my consultant at the other hospital. I'll definitely approach them and try to sort something out. Thanks for the suggestion.

[Longtimer in reply to Marijo1951]

The nurse used to send me the blood test forms for the hospital, but said a fortnight ago that she's not allowed to send anymore because GO knows what to test for and should be doing it. I rang surgery, no problem.....I presume results.are looked at by Rheumatolgy and GP....I will check that when I go in 2 weeks time.....

[Marijo1951 in reply to Longtimer]

I'm glad you've sorted out your problem - gives me hope with mine!

[Longtimer in reply to Marijo1951]

Good luck, keep us posted....