Frustrated!: Last week I had a blood test at my GP... - PMRGCAuk

PMRGCAuk

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Frustrated!

Decsgran profile image
Decsgran

Last week I had a blood test at my GP’s request so that she could see how PMR was and then we could discuss a tapering schedule. This afternoon I rang for test results as I hadn’t heard anything from her and was told it was normal, whatever that might mean. So I said I would need aa appointment as I would need more steroids and needed to discuss with GP. Earliest scheduled telephone appointment was 6 May by which time I would have no more pills, as she hasn't put them on repeat. I could have spoken to another doctor who doesn’t know me or try to get one of the two emergency slots tomorrow morning. So I have just sent in an e- consult form asking what the ESR and CRP levels were, how they had changed, asking for a prescription and to have them on repeat and sent her a tapering plan that I propose to follow unless she has other ideas! Watch this space!

37 Replies
PMRpro profile image
PMRproAmbassador

Wouldn't do to be ill would it?

How frustrating - not to mention stressful! You could ask to speak to the practice manager who may help sort things out as you need to know that your prescription is forthcoming. I am currently embroiled in a tapering issue with rheumatology about a suggested tapering plan but the response I have had to date is nil. I hope you get your problem sorted out soon.

As you know, we tend to expect normal inflammatory markers when being treated by Pred. It’s how you feel symptom-wise that dictates the treatment you need. Good luck getting the only drug that relieves our symptoms!

I'm so sorry to hear this, and also comforted in that strange way as your experience mirrors mine atm. I sent an email request, but it didn't go anywhere - they just emailed back 2 days later to say I need to make an appt, then gave me an appt with GP hub who just prescribed 5 days pred. I just don't understand how the GP practice works. Someone told me it's because they operate as a 'business' not a 'service'. I do hope you get a proper hearing and treatment plan soon.

Jackoh profile image
Jackoh in reply to Hopeiscoming

“ someone told me they operate as a business not a service” !!!😱

Had similar experience after first blood test. Was just given prescription as doc went off on holiday. Wasn't told the actual levels but told to make appt to review in 2 weeks at which point was told couldnt't have an appt with the first doc as 'we can't just spirit appts out of thin air you know'. Grrr.

PMRpro profile image
PMRproAmbassador

Actually - don't reject the speaking to another doctor out of hand. Sometimes it can have very positive results even if they don't know you.

I use patient access and can check my own blood results. Ask for a form to look at your access and check all boxes, that way you can see your medical history, blood results etc.

Does anybody know what on Earth has happened to the GP system?? I know not all are so unreachable now but many seem to be. GP’s weren’t involved in the early Covid diagnosis and care and still aren’t as everyone had to go through 111. At first there was chaos everywhere until everyone worked out systems of working. Face to face appointments were limited or removed in some cases and no or minimum house calls. So why even now is it virtually impossible to get a telephone appointment within 2 weeks (if one is lucky) unless it’s urgent? What has everybody been doing this last 12 months?

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

Somehow, I suspect there are a LOT less staff. They were taking about digital changes on Sky News this morning - and how some of it is here to stay because it does work well, especially within the healthcare system. "They" may think so - but I am staying here where I can see my GP if I need to, just like before.

SnazzyD profile image
SnazzyD in reply to PMRpro

But why fewer staff? I know some clerical workers at my surgery are working from home, but when I did get a face to face months ago all the GP’s we’re doing normal surgery hours. It is really in the last 6 months that suddenly there are no appointments and I know the flurry of vaccine giving is over because there is a system that doesn’t mean all hands to the pumps and in any case it went south before the vaccines. How is/was time being spent?

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

A lot of doctors are fleeing altogether I think. But yes, I've noticed it is getting worse rather than better. Do you not think traffic on the forum for the sort of thing patients might want to speak to a GP is up? And the nurse response seems rubbish as well.

SnazzyD profile image
SnazzyD in reply to PMRpro

Very much so. Many more questions being asked that I really think should be going to the GP first where the person has given up on trying or tried and failed.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

A friend told us months ago that her gentleman friend could not get a GP appointment for what was potentially cellulitis - in the end we told her to get him to go to A&E who gave him abx and told him to come back if it didn't improve. There's no wonder my daughter tells me A&E is manic. And things that were banal are becoming A&E fodder because they aren't dealt with in a timely manner.

maria40 profile image
maria40 in reply to SnazzyD

It seems ridiculous that we can now visit hairdressers, opticians dentists and others who see us 'face to face' yet our GPs are making it difficult even to talk to them over the phone.

Don't be too hard on GP's. Community Nurses etc. The vast majority are spending very long days giving vaccinations. I found talking to the Pharmacist at my (rural) practice was the way to get my repeat prescription changed. And the Practice Manager and Receptionist were both very helpful when there was no GP actually at the surgery. It's worth making friends with such people !!

PMRpro profile image
PMRproAmbassador in reply to Cross-stitcher

I think that some practices are worse than others. I can't excuse any practice where a patients can spend an hour or more starting at 8am and when they finally get an answer they are told it is outside the window, all the appointments are gone and try again tomorrow. And there is a 2 or 3 week wait for a GP phone call. Which would perhaps be fine if the nurse knew about the problem but they don't have the background, even the specialist advanced nurse practitioners,

This was an issue way before vaccines came in

Part of the problem at my surgery is that although there are 8 doctors, 6 of them are female and work part time. Mine is only there three days a week.

SnazzyD profile image
SnazzyD in reply to Decsgran

Make up of the medical team makes a huge difference. My last surgery was very wealthy but the partners still liked to keep the doc numbers as low as possible, preferring to try to make the nurses practice outside their competence level. Most of the work was dumped on the salaried GP’s and it was they who were left, some literally weeping at 6pm because the waiting room was full of ‘extras’ while the others went home. They never stayed long.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

I think that is a primary problem - young doctors with uni debt can't afford to become partners and the partners take a loan of the salaried juniors. How to assure speedy turnover ...

Ringo4 profile image
Ringo4 in reply to SnazzyD

Hi everyone. Apologies for wading in but...in about 2005 GP salaries (and those of hospital Consultants) received a massive uplift. This meant the average GP started earning over £100k. More women entered general practice as it meant they could afford to work part-time. Men could also afford to work part-time, retire early, do other things etc. This was the start of the breakdown we are living with. There are not less staff overall, there has been a year on year increase. It just hasn’t added up to a better service.

Please don’t feel sorry for GPs giving vaccines! They are being paid a minimum of £12 a shot when they should be helping you instead! Many voluntary organisations such as St Johns Ambulance, offered to give vaccines. They are very skilled and would do it for nothing...Hospital Doctors have had session time out of hospitals to give vaccines instead of being in the Hospital answering your queries - they could do this because the hospital was quiet...I could go on (and on )

Meanwhile, trying to be more helpful. The GPs find the e-consult system a lot more helpful because they can control their time better. They are not wasting time as patients come in and out, explain what’s wrong etc. If you can use e-consult it normally gets a good response and should be responded to in 48 hours.

If you mention a particular GP, it will be left for that GP to look at. I agree with PMRpro, there can be real value in communicating with a different GP, another opinion can be surprisingly useful and they may get interested. Keep notes of who you speak to and who is helpful. Send in an e-consult on a Sunday, not Monday morning, so it is seen quickly.

Hope some of this is helpful. 🥴

PMRpro profile image
PMRproAmbassador in reply to Ringo4

And the hospital was quiet - because the patients couldn't be referred ... That said - my SIL was referred to rheumatology for ?inflammatory arthritis and was seen in 2 weeks. The conclusion was carpal tunnel and the sore hands ?OA - ignored for 2 years by him.

My daughter's GP practice has 16 different doctors - a large proportion of them are married couples job sharing - so in fact 10 or fewer full time posts.

My grandson, a pharmacy student, was taken on to do vaccines - but after several weeks still hadn't been trained. GPs objecting to not being used perhaps?

Ringo4 profile image
Ringo4 in reply to PMRpro

That’s interesting. If your grandson was taken on by the GP practice for community experience as part of his training they still get the £12 so even better! Though I am aware of many people who volunteered their considerable skills who just haven’t been used at all.

It is a shame for your grandson because it would be excellent training and an experience never to be forgotten.

PMRpro profile image
PMRproAmbassador in reply to Ringo4

It's Scotland so not quite the same, I thought they were zero hours contracts? Haven't spoken to him or his mother for a few weeks, might well be working by now. But it was probably hiccups in the supply chain.

Rosbud profile image
Rosbud in reply to Decsgran

That’s the same S my surgery, 8 drs only 1 full time, we have one who does 1 half day A week , ludicrously x

different reason but same dilemma....out of pred..got straight on phone to surgery demanded to speak to practise manager..got call from prescribing pharmicist..got mnths supply to tide me over...you must not go without!!!!

Well the consult worked. I’ve just had a text from GP. Blood test results print out waiting at reception for me to collect. Pred now on repeat and she’s happy for me to follow the taper schedule I suggested. She did leave the calcium and vit d off repeat but I’ll talk to reception tomorrow. Result!

HeronNS profile image
HeronNS in reply to Decsgran

Great!

I totally empathise with you and your frustrations. I kicked up a fuss last time no-one rang me following my blood test, then when a GP who didn’t know me rang and said it was ‘normal’ and couldn’t advise about tapering I despaired. This time the head of the practice rang but he was more concerned about my white cell count and said my other readings were ‘normal’. When I told him my plan of tapering he said “Fine” He didn’t think I should have a Doppler test just wear support tights/ socks or rub Viterol into the veins. They don’t fill me with confidence!

PMRpro profile image
PMRproAmbassador in reply to GrannyJane

What was up with the white count? High or low?

GrannyJane profile image
GrannyJane in reply to PMRpro

He didn’t say, just that he was concerned that I must have some sort of illness, flu or a urinary infection. I said I had neither, so he said I must contact surgery if I develop anything. Still feel fine apart from PMR and usual stiffness in the mornings. Have just reduced ti 12mg and am coping well. What do you think he was concerned about and what should I be looking out for. Be most grateful for any information.

PMRpro profile image
PMRproAmbassador in reply to GrannyJane

That means the white count was probably high - an indicator of infection. However - a doctor should know that being on pred can increase the white cell count, usually by increasing the neutrophils which then increases the total. If you had an illness/infection the ESR/CRP should have been raised too. You could have a UTI without symptoms but usually you'd notice something - even if it is only feeling ropey.

GrannyJane profile image
GrannyJane in reply to PMRpro

Thanks PMRpro, he didn’t say other results were up just “normal” It was in my teenage years that I last had a UTI, I do however get frequent hot flushes and overnight sweats but this is not related to age as I am 72 and long past menopause, is this related to PMR? I am generally feeling quite fit and am fairly active, but happily fall asleep after lunch when time allows, apart from that I am on the go all the time with plenty of energy.Sorry to ask more questions but there seems no medical advice available at my surgery and the pharmacist always seems run off his feet!

PMRpro profile image
PMRproAmbassador in reply to GrannyJane

All - UTI symptoms, sweats, flushes - can be related to PMR and/or pred. Sorry - but that's the way it is, just to make things complicated!! I had all with PMR long before pred, pred makes you more susceptible to UTIs and can cause the sweats and flushes. And the afternoon nap is quite normal in PMR for some people. If it does you good - go for it!

GrannyJane profile image
GrannyJane in reply to PMRpro

So grateful for your knowledge and advice, sometimes I feel like a real hypochondriac as I have so little information about this condition apart from all the posts on the Forum. Some people seem to suffer far more than I do, I do appreciate it is a different journey for every individual.I wish the medical profession were more helpful but they seem to have no time for their patients any more. Thanks again.

PMRpro profile image
PMRproAmbassador in reply to GrannyJane

I suppose it may save them face having to admit to not knowing how an illness affects the patient ;)

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