Hi everyone. I am bemused by the request from my GP to go to discuss my RA. I told the receptionist that I have blood tests every 3 months and I have an appointment with my Rheumatologist on the 31st October and that I didn't see the point of using up an unnecessary GP appointment when there are so many people who need one and have to wait ages for one. The receptionist, I have to say, was lovely, she put me on hold and went to pass on what I had said. She probably only asked another receptionist as she was new. She returned and said you still have to make one. I have two issues, firstly that it is totally unnecessary as my GP won't know the first thing about RA unless he/she has it himself/herself and secondly that I would feel very guilty wasting his/her time when someone else needs one more than I do. I said that I would get back to them to make an appointment but I don't want to. Has anyone else had their GP surgery ring them with this request and did you go? Thanks for listenening.
GP Appointment to discuss my RA: Hi everyone. I am... - NRAS
GP Appointment to discuss my RA
Hi Sheila,
GPs have a target of ensuring they support patients with long term illnesses. It is part of their CQC inspection that they provide annual reviews. Your GP will likely discuss anything they can do to support you etc.
Yes, I had this a few months ago.
Nice GP who I'd seen before but basically a box ticking exercise as it was evident that I knew more about it than he did and he said as much in his notes 🙄 I presume that the practice is paid for it. When it comes round next year, I'll probably suggest that it's not necessary - unless I happen to want to see a GP about something else at the time! 😂
Yes just last week and same thing nothing wrong and GP can't change meds so why bother yet again ? as this happened to me before Covid hit. The answer is it is the shared care agreement and they get money for your bum on the seat. In my view I'd rather get an appointment when I need one perhaps in a couple of months and not needed to see a GP in over 2 years anyway but it is the way of the NHS. So to make the most of this appointment I'm going to ask why can't the computer system see the hospital blood tests as I'm fed up of getting blood test reminders when hospital has done the test weeks before and all are up to date. Why is the GP asking people to ring in in response to the their texts to wait 40 minutes on the non urgent phone line. Why can't they open the on line booking system for clinics and blood tests. x
👍😀. I think so too. It just seems such a waste of valuable time. I think I will just wait and see if they forget about it for the next 20 years. Thanks for your reply
i asked my consultant to send a copy of my blood tests to my GP. It works well, except when my WBC is low and they phone and panic when my consultant is ok with it
Around here the results can't be seen by GP as the computer says "no" it is the subject of many angry patients and GP's who waste money sending texts when the tests are up to date. Not non co operation but computer programming error. xx
ve got an. Interstitial. Lung. Disease also auto immune things like RA etc.
I’d love one of these appointments.
As long as I could have it with the GP of choice who has some knowledge of my conditions.
You definitely shouldn't feel guilty, though personally I'd be annoyed that it was a waste of time.
But if your GP is prescribing medication, or even if they're not, it may be that they'd be more comfortable if they got to know you.
I'd say you were lucky to have a GP who is looking out for patients with long term conditions. Though I would still feel it was a waste of my time.
I've had no requests. Even when they took on my methotrexate prescribing I was told the doctor would need to call me but they didn't, they just sent a text message. No over 40s health check (not that I want one, I just thought I was meant to be offered one). Haven't seen a GP in years.
I’m same. I’ve never even met my named GP. He does phone at my request because I have rare and very complex rheumatic diseases compared to RA - need occasional gate keeping from him to access new consultants from other specialisms. He’s nice but so dithery about prescribing specialist meds that I find it easier just to phone the consultant’s Secretary. I’ve never had any routine health checks since I registered there 18 months ago - even for my hypertension and hypothyroid or a smear. I think they are confident that I will run or work it all out myself or with my various specialists.
When I had RA as only diagnosis my GPs all understood this easily as it’s quite common so I did used to see GPs more about drug reactions and other concerns. But once under specialists they happily just expect me to sort things out myself without bothering them. Mostly this is okay as I’d rather leave GPs to see and help those who have acute or undiagnosed problems. But recently I’ve ended up in A&E twice and out of hours twice and finally emailed my GP via the patient consult system to say “I’ve had enough and not well enough to chase this - please can you take over?”. He phoned a week later to ask how he could help!?🤦🏼♀️
Think it would be good to meet him in person once a year just for the sake of continuity of care. But that’s just me - I wouldn’t want them just box ticking for the sake of it. They monitor my bloods 3 monthly under a share care arrangement and I would really like to have access to the results without having to email the admin to ask.
There are so many patients with chronic conditions that go undiagnosed or are ignored by secondary care - I think if we are under tertiary care already then really they are right to leave us to it unless we actually ask.
"I think they are confident that I will run or work it all out myself or with my various specialists."
I think you've hit on something there. I feel caught between two stools. My rheumatologist thinks they're too important to deal with trivial things like prescribing or pain relief; my GP assumes all rheumatology are taking care of everything related to the arthritis. I'm stuck in the middle with nobody willing to take responsibility for some of my medical needs.
I have asthma and a history of other conditions too.
Early this year the hospital told me they'd sent my GP a shared care agreement so they could take over prescribing of my methotrexate and I should request it from the GP from now on. So the next time I needed a prescription I called the practice to request it. I was told the GP would need to speak to me and was given a callback slot. They didn't call. Instead, I received a text message saying "We've added methotrexate to your prescriptions; do you need folic acid as well?". I responded by text and that was that.
Three months later I got a text message telling me my blood tests were due and to pick up the forms from the practice. All seemed to be working well.
Then I noticed my annual medication review date request had been pushed back to March 10, 2023. That was odd because my last review - with the clinical pharmacist, by phone - was on 20 July, 2021.
Then three months passed since my last blood test and I hadn't had another request. As nobody had communicated with me over the shared care agreement, I had no idea how this was meant to work. Bear in mind if you call the practice it can take more than an hour to get through and often they tell you to call back at another time. So right now I have no idea who is managing my blood tests or how.
So then I started looking at dates and I realised, that text message my GP sent me about the methotrexate was on 9 March, 2022. Then I see my annual medication review is due on 10 March, 2023. They've counted a text message - about one drug in several, treating one condition in several - as my medication review.
I completely understand the pressures GP are under and it's not their fault. I have a lot of sympathy. But I'd say this is, at best, dishonest. At worst, I'd say they're being negligent.
There is more to this; like the time I was on a waiting list for a coil fitting and got overlooked because they thought I'd already been seen so I ended up waiting 7 months - this was after being put on methotrexate, when I'd been advised to get proper contraception for obvious reasons.
So I can't help feeling a little sidelined. I know they are busy, but who are they busy with if it's not the acutely unwell and patients with significant long term health problems?
I really get what you’re describing and sorry for it too. My old GP practice was just like this - which is why I moved to the only other practice in my rural area of Scotland. This smaller one is better but all GPs seem to be out of depth with me due to overlapping very rare conditions - so I feel shunted about like a total duffer.
Consequently I really do have to run my own healthcare as if I’m the manager of my own MDT. I think my rheumatologist is probably grateful to me for this as she has given me her email to contact directly and writes directly to me whereas her other patients don’t get this privilege. But she isn’t a specialist in my main CTD, diffuse systemic sclerosis.
Rather she specialises in Lupus and RA - which means she’s spread extremely thin. I didn’t like the only scleroderma specialist here though so I’m happy to stay with her and help her out where I can. Same as I do with all my doctors including GPs.
This just about works mostly - for them at least.
But the impact this has on my mental state and fatigue levels is great. I red someone here saying they have a GP who supports them for the psychological impact of RA. I can only dream?!
What noone ever does is contact me about my mental health, even just for a quick chat about whether I’m coping, living with very rare rheumatic disease overlap and life threatening issues which seem to be more frequently arising now.
I think if I were my own GP I’d be concerned that this particular patient might reach breaking point with so much wrong. And I admit inhave felt I might sometimes despite being a glass half full type.
For instance I’ve just had what is either pemphigus Vulgaris or Stephens Johnson Syndrome caused as a unique reaction to IV immunoglobulins I got given a month ago as an inpatient. I sent a photo of my horribly painful and hideous blackened bleeding mouth and lip to GP and asked if I could speak to him about my new GI treatments which I’m reluctant to start - due to significant weight loss, nausea and being unable to chew or swallow. This has taken me to out of hours and A&E several times in the past month.
Yet when he phoned a week later he just said “and how can I help you today - something stomach related I think?”. So I stuck carefully to the salient stuff, hoping that he might possibly say “given we’ve never met would you like to come in and show me your mouth and discuss how you are coping with all this?” Instead he just said “okay I’ll contact the gastroenterologist and explain why you aren’t keen to start this antibiotic and would prefer the other antibiotic which you tolerated well. I hope your tummy gets better soon (whhhat - it’s completely paralysed for life?!) -take care”. I replied “thanks so much - you take care too” as I always do when any healthcare professional phones. I worry that the workload will push them to breaking point.
Maybe they think we are coping and that other patients with common chronic or acute or even more life threatening conditions need them more? But cancer patients do have Maggie’s Centres, Macmillan and other huge and well funded charities and support groups.
So for me the odd unsolicited call to check on my wellbeing, especially when still hiding from Covid to a great extent, would just mean such a lot.
But at a guess it’s long Covid, heart, lung and cancer patients who get first dibs for psychology services for living with long term conditions. I was referred 4 years ago and assessed and put on a waiting list but I’m still waiting. They told me when I phoned in a bad way 2 weeks ago that everyone on the list is in the same boat now. They offered me the option of skipping 1-to-1 and going straight to group work. I declined, got off the phone and fell apart for a couple of days, then pulled myself together again for sake of my husband and family.
I know nothing is gold standard with NHS anymore so my expectations are low. I don’t need them checking my weight or BP or phoning about my blood work as I have various hospital clinics all doing this regularly. But a bit of occasional GP concern and kindness about the toll of living with all this now and then would certainly not go amis x
it’s funny but my GP isvery active in assisting me with the small Add ons we get with RA so they support re mental health, X-rays if things don’t feel right or discussing supporting medication to back up my RA and others autoimmune diseases.
It’s been a godsend and sometimes they have had treatments done that my consultant has ignored and therefore I feel I have a more Rounded service with both camps helping.
You are very lucky to have such a good GP. Can you send him my way please 😄
My GP practice are excellent too and have often offered to fight my corner if I have concerns about my RA consultant. Don’t often see the same GP as it’s a huge practice but very rare I get a poor experience from any of the doctors I’ve seen. Even if I’ve gone about something none RA related some will ask how that’s going and do I need anything. I know I’m very lucky and not many get the same service.
Had a call from receptionist to say I needed to book an annual review with the pharmacist at the surgery. It was thankfully only a phone appointment. He was lovely but it was a total waste of time. He started with the call with ‘I understand you’d like to speak to me’. To which I replied ‘not particularly but I was told I had to’. We both had a laugh at that. Any way my only medication he seemed to be worried about was Ferrous sulphate and whether my bowels were working considering the amount I was taking. (I thought he’d question the length of time I’ve been taking naproxen but didn’t even mention it). He then went on to question how well Rituximab was working - although what he thought he could do if I said it didn’t I have no idea. We spent the rest of the time discussing my recovery from foot surgery. He was very friendly but a complete waste of everyone’s time.
My annual prescription review is due in about 10 days. Back in in July I was sent a f2f appointment saying it was due then. I called saying it’s due in October…..so can I do it then?
“Yes” said the woman who answered ….”but can I just as you a few questions”? I said “Yes” & she proceeded to go through my meds…asking what I took them for & what dose I took.At the end I asked who she was….turned out she was the receptionist…..who then said she would make an appointment for me to see the doctor in October.
I have heard nothing…..so unless I contact them…the pharmacy….in the same building as the doctor& owned by the practice will refuse to dispense my next prescription.
Instead of tick box exercises they need a computer programme they understand to decide who does/does not really needs to see a doctor……and when.
I had exactly the same a few weeks ago. Waste of everyone’s time, plus the GP had his mask slung under his chin throughout so made me very stressed. Stupid.
I can't believe the number of medical professionals who don't wear a mask. I would have asked him to put it on and if he didn't I would have left. Thanks
Nobody in my GP practice/health centre is wearing masks routinely anymore. I went for a US-guided steroid injection there in August and when the radiologist saw I was masked, he put a mask on too. I thought that was a considerate gesture.
What annoys me most is in phlebotomy. I'm sent for a lot of pointless blood tests which I'm sure the doctors don't even look at. Waiting times can be over an hour. The waiting room is so tiny it's often standing room only. And no masks. But it's for the good of my health, right!?
Hi Sheila yes I was contacted by the local surgery to ask me to come in for a yearly review of my RA. I haven’t had this before but I went in anyway. She did a general blood pressure, weight etc check and then discussed how I was getting on with my Methotrexate and asked specific questions about how many joints were involved, how I was coping etc. I found it very reassuring. I’ve only seen a Consultant once in the last 3 years and have had all sorts of problems with my feet and just generally managing about the house with it. I was also unhappy with my current hospital and was thinking of switching. She discussed this with me in detail - a conversation that I would have been uncomfortable with in another setting and I am now staying put. I found her input valuable and objective. Given she is usually my first port of call at the practice when I have a medical problem, I felt that she will now have a wider understanding of my needs when I contact them. This has been really useful in the last few weeks when I have had a raging infection that she managed for me understanding that I had to come off my Methotrexate for the antibiotics to take effect and ensuring I stopped my Hydroxychloroquine as one of the two antibiotics I had to take interacted badly with it. From my perspective that meeting was incredibly valuable.
Thanks Julie. I am pleased to hear your appointment was so valuable. You have made me think again. I was being very negative as usual. Lots of good points in your reply. Appreciated.
Thanks Sheila. It’s the practice nurse I see and when I’ve been unable to get hold of a rheumatology nurse, the practice nurse can prescribe steroids and painkillers if required. She always asks me to discuss with my RA nurse at a later date but she never leaves me in pain.
That is really good. No-one should be in pain in this day and age.
You are fortunate …when I had a f2f with one of the GPs at the practice I joined when I moved house……I mentioned that Rituximab had been a life changer for me.She asked what it was & what did I take it for. …. when I told her, her reply was “Oh you’ve got RA have you”?
Which proved she had never bothered to read the letters my rheumatologist sends after any consultation I have re my RA. I doubt it would be very helpful if she did a RA check up.
Thanks for this. I’m glad the GP practice are so good because the hospital I attend can be shocking. A couple of weeks to speak to an RA nurse, very rare access to a consultant - I’ve seen one 3 times in over 10 years. Wrangling over blood test forms - a nightmare. So I guess that’s the healthcare lottery in action and thank goodness for a great GP practice in my case.
That is not acceptable either. That is how people are given medications they shouldn't take. A few years ago now I had to go to primary care with pain behind my ear, the doctor at the hospital was really on the ball and asked me to go straight away to another hospital 10 miles away because he thought it was mastoiditis and as it was Saturday the oncall Consultant was there. To cut a long story short, when I arrived the nurse I saw asked me about any conditions I had and when I said RA she had no idea what it was, she said "What's that" and when I said Rheumatoid Arthritis, she just said "Oh right" in a tone that suggested she still didn't know what it was. It didn't fill me with confidence. Fortunately it wasn't mastoiditis but shingles without the rash!
I’d tell her that unfortunately’ due to covid ‘you’re only seeing GPs for emergencies, and only after they’ve called your number at 8 am for four or five days and held on for over an hour. Then you can do a telephone consultation if they’re happy to answer your call back within two rings . … Absolutely no way would I agree to that ! What a cheek ! They can do their box ticking next time YOU need to see them .
😂 agree
The GPs will be paid for this check up, whilst others can't get an appointment.
Thank you. Your reply did make me laugh but after reading others views too I can see both sides. To be honest the reason I don't want to go is because of covid and the number of GPs not wearing masks. I feel that if I go I am putting myself at unnecessary risk as it isn't urgent.
hI Sheila_G, I had that as well, but I was told the GP has to do a check as well so you can continue to get your meds as I am under joint care with my GP and consultant at the hospital. Still think it was a waist of time, just ticking box's.
Thank you. Good point about them not supplying meds. I have had a couple of times when they have refused my meds until I produced dates of blood tests, which they should already have had.
Yes I have and after talking to the receptionist and telling her I didn't have any new things to discuss, they accepted the fact that I didn't want to waste their time or mine on an unnecessary appointment.
Thank you. I'll try that.
yup, they just went through the my medication with me and asked me how I was ….. bit of a waste of time but hey ho.
Thanks. Ordinarily i would have looked forward to going strangely. It is just covid that fills me with dread.
oh it was on the phone!
oh well I wouldn't mind that. I will suggest it.
They might have a special interest in rheumatology which has to be a good thing I think. Who knows 🤷🏼♀️
Yes they could have. Good point
i always try to find a positive. Could well be wrong and it is a tick box exercise. Whichever it is, they'll learn something
I always try to find a positive too as I have said on here many times. The positive here is that I am making space for someone who is sick, I'm not.
Or it could be an opportunity to educate the GP?
That's a good idea.
I have been having these annual reviews for a number of years. It is to monitor people with long term conditions so mine covers asthma as well as RA. At our practice they are done by the practice nurse not the GP. I agree that they are probably part of a box ticking exercise but I have found them useful at times though they are more knowledgeable about asthma than RA. It is an opportunity to ask questions and, for example, a few years ago, it was the practice nurse that suggested I have a dexa scan which hadn’t been suggested by the rheumatology department, though they have referred me for them since.
Mine is done by the practice nurse too. I view it as an opportunity for me to build a network of care - it’s a partnership between the hospital, the GP practice and myself. I am grateful that when I flare up and can’t get an appointment with a Rheumatology nurse, I can contact my GP practice nurse and she will review me and provide steroids, painkillers as required.
I have never considered going to GP for anything to do with RA buf then again I have an excellent RA team so I am very fortunate and have never needed to. Thanks for reply.
I had a call like that to discuss the medication I was on. My GP hasn’t prescribed anything for me, only consultants at hospital have. When I got to my GP, she said, what can I help you with today? 🙄 honestly what a waste of everyone’s time.
I had the same issue . I told them my consultant dealt with my TA thank you. GPS get paid extra for special services. RA,diabetes,asthma, . My friend told them her diabetes was dealt with by secondary care . They were not pleased
Goodness...I've forgotten what my GP even looks like! Mine appears to be MIA. I'd be stunned if they asked me to discuss my arthritis. I'd personally decline the offer since they misdiagnosed, and gave me the absolute runaround at the start. I don't bother with them at all these days. Anything rheumatic, I got straight to rheumatology department.
The doctor who diagnosed my RA was amazing and within 24 hours I had had blood tests, results and an appointment to see a Rheumatologist but that was 20 years ago and he is long gone so I have no idea who will see me now, it might even be Lord Sugar. 😀
It's changed a bit since then! 🤣
it is part of the shared care agreement that GPs sign up to. Given that people are having longer gaps between their rheumatology appointments, I think it’s a good idea. Hospitals are trying to see patients who’ve been referred and still waiting to be seen, which is why many appointments are rescheduled for later dates.
My GP treats me holistically, whereas my rheumatologist just focuses on my joints. Even when I developed heart & lung issues related to the inflammation, he wasn’t interested, and was left to my GP to investigate. If I’m struggling with side effects from meds, they offer advice or prescribe something to help. I also have asthma and severe adrenal insufficiency, so opportunity is taken to discuss how respiratory and endocrinologist are managing my care. Any concerns she initiates contact with them, to clarify or even expedite my follow up. So I find them incredibly useful.
Thanks Maureen. I too have several other issues but I am dealt with by the appropriate Consultants. I also have no RA problems at present so I don't really see the point.
Exactly….I tried to raise a long term worsening condition with this new GP.I think she must be the daughter of the GP who 20+ years ago told me to “ go home & take aspirin…at your age (50’s) you must expect aches and pains.”
Thankfully I saw a Rheumatologist privately & was diagnosed with PA that 2 years later morphed into Sero+ RA…I’m sure It was the right way to go…I don’t think I would be as well as I am, if I had relied on Aspirin.
I’m having surgery in a couple of weeks (privately) for the condition that the new GP was not interested in.Not mega serious….but v painful.
I also have this pointless exercise. Back in the days you'd see a gp I used it to get my blood pressure done and my pill re done for the year. Now it's a phone call there's no point at all.
Thank you. I think that given the situation in the NHS at the moment wasting valuable time is not necessary. I know this isn't a GP issue but my friend's neighbour who has had a serious heart attack and also needs to see a Neurologist has just been given an appointment for January 2024. Totally unacceptable.
I just fill out a form which no one ever looks at. I have to remind my GP of my hypogammaglobulaemia and also the bad reactions I have to certain antibiotics. When I need my HRT supplying my god it’s like pulling teeth they insist on a weeks BP monitoring and my blood pressure is absolutely fine before they’ll prescribe it. If I went to such an appointment the GP wouldn’t have the first clue why I was there as has happened in the past for med reviews which are unnecessary too. I doubt I’d go to a RA review coz I know they can’t do anything to help and I’ve seen them before and begged for help and they’ve done nothing.
Thank you. I have been given medications twice when the Pharmacist at my local Chemist has said I can't take those with my other medications as it would cause toxicity.
good to know someone is watching out for you. Reviews can be a great thing but they’re only useful when there’s something they can do or you feel it’s necessary. Can’t get a GP appointment for love not money when you really need one so if bloods are ok and the receptionist asks if you’d like one then makes sense that if you don’t think it’s necessary that they take your word for it. The receptionists at our practice triage all the calls for an appointment with a GP anyway. It’s just embarrassing when you turn up for a review and they’ve no idea why you are there 🙄.
Like you I think it’s a waste to offer an appointment to somebody who is happy with their RA rheumatologist’s treatment.
As you say the average GP is not usually well informed or even interested in RA & has never heard of a lot of the treatments we are receiving….so would not be able to offer anything that we are not already getting from our RA team
Sadly it’s probably a box ticking exercise to try to rescue GPs reputations after their fall from grace after Covid……whereas it seems to be doing the opposite.
This offer seems to be doing the rounds atm….I politely refused…& that was accepted.
Thank you. I will do the same unless they say I can't have my meds unless I do. I would certainly argue that point as I have regular bloods taken at the health centre where the Rheumatologists are.
Your remarks, AC, are so true. I've just spent time reading all the posts on this thread. One thing is obvious - most GPs (mine included) are not very informed on anything to do with rheumatoid disease. I use the rheumatology Helpline and the specialist nurses ( very well-informed and familiar to me) if I have any problems. Nobody knows everything about this wretched disease - this is my 55th year with it. Patients are being diagnosed every day - mostly young; some very young, and it is vital to concentrate on the newly diagnosed in order to get them on an acceptable and, if possible, successful regime of medications before too much damage is done. That possibility was not available in 1967 when I was diagnosed. A pity! But that's life.
I don't have a rheumatologist just now - not since she took early retirement at the beginning of the covid pandemic. I'm ticking over well enough at 87. My GP has served me well recently as I was diagnosed with heart failure after a blood test he demanded following a telephone appointment. He was very quick off the mark, and a team of specialist cardiac nurses were in touch within 2 weeks. I'm doing well thanks to them,
Nothing is exactly as any of us would like - and those who remember the "olden days" can be rather critical, naturally enough.
Beautiful day here in West Kent. Hope it's the same where you are.
Bienassis
Hi Biennassis…..yes sun is shining here too.I’m very sorry to hear about your heart problems but good news you have a caring GP who is looking after you.
Sadly my GP is not like that…..I honestly think I would take a taxi to A&E if ever I needed serious help….fingers crossed it doesn’t happen.
Take care
AC
Such a lottery this GP business! I'm lucky with mine in the sense I mentioned ; he is straightforward in many ways and recognised immediately from the blood test results that something serious was amiss with the heart. Most GPs have a particular interest in some aspect of health, and heart problems are high on my GP's list. He married a cardiac theatre nurse! Perhaps they have conversations around the subject!
He never attempts to give advice about anything he is unsure about and is quick on referral - but, of course, he has little control over the response to the referral.
Such a nuisance for you to have to resort to A&E. Not helpful for anyone in the present climate. I just hope it isn't a regular action you have to take.
I do hope you are finally settling down in your new home. I do remember a post in which you described the move and advised against it!
bienassis
Thankfully I only ever needed to go to A&E twice…..once when I fell & broke my wrist & that was straight forward, but don’t ever call 111 with a nosebleed until you have measured how many cups of blood you have bled!
There was I about to pass out with mouths full of blood after having bled for over an hour& this numpty wanted to know “ how many xxxxy cups full”….& wouldn’t go any further until I spluttered a number!
But two paramedics turned up who coulldn’t stem the flow…but bless them,,,,before they carted me off to get my nose plugged….they gathered up the towels& paper kitchen rolls I had soaked, found bin liners & even cleaned up the white kitchen&/ceramic floors!They were amazing.
Heavens! What an experience! I was told by my rheumatologist nurse to always call 999 and not 111 if I was in real trouble. I remembered this after an osteoporotic fracture. I had no idea at the time what the excruciating pain just above my pelvis was caused by, but 999 were truly on the ball. I was upstairs and couldn't get down the stairs. I was given a thorough assessment in Emergency and, interestingly, several "historic" fractures came to light in the spinal lumbar area as well as the new one.
There followed a long rather boring story - but what I did learn as well was that if you are "trapped" upstairs for some reason and unable to make it downstairs it is impossible to arrange for two paramedics to carry you down in a chair. This happened to me (trapped in my bedroom for 3 months) - and in spite of many phone calls to various social service depts and ambulance teams, nobody had the authority to come out for such a task. To take me to a clinic or hospital appointment and bring me back would be no trouble - but to just shift me downstairs was not part of their remit.
Luckily, a team living locally got in touch with me eventually and said permission had been given to finish their shift by lifting me downstairs. A very helpful couple who agreed that there are many like me who have such a dilemma occasionally and they are putting forward a question about it in their next meeting. So, I can only hope that the "rules" are already modified in some way.
To finish off, we - my husband, daughter and myself- had a discussion to consider moving to a bungalow or flat. Very heated couple of hours! That was when I remembered your own experience. Nothing was decided - the only suggestion I agreed with was to investigate chair lifts! That is the current line of enquiry. Not much headway has been made so far. Meanwhile, I sleep in a NHS bed in the dining room.
Did you ever consider a chair lift?
Have a good week!
Bienassis
No I couldn’t really have a stairlift at my old house as the stairs were narrow,& went back on themselves…I did consider a lift you stood in from my dining room straight up to my bedroom….but it was a big house…& I would still have to pay £20 per hour for a cleaner, on top of the thousands for the lift. ..& now I’m here and almost settled I can thoroughly recommend living on one floor with only two bedrooms!
At the time it was so stressful because I was not only suffering side effects from the Covid vaccinations,& the two fractured vertebrae ……which were the main reason for the move… but three days before I was due to move in the May, my buyer walked away. He had lied about his financial position & with solicitors working from home everything got out of hand. Luckily I sold again quite quickly & moved in the August.
But I would still recommend moving at 60+ rather than 80+!👨🦯👨🏻🦼🧑🦯
That first night sitting looking at 60 removal boxes I could quite easily have run miles away!
But I do think if I had moved en famille it would have been easier, having to unpack every thing myself pluse cooking & laundry to exist really is something I would not willingly repeat.
Now I have a small circle of new friends here…including a few husbands who have helped out with putting up shelves & pictures etc…..their wives say it gives them something to do😂!
I’m pleased I made the move …thankfully I still have the same lovely rheumy…but the GP I’ve signed on with…is OK for writing my repeat prescriptions…but definitely nothing else!
I hope you make thr right decision,& in the meantime go carefully,
Thanks, AC, for your input on the question of moving and stairlifts.
I do agree that thought should be given much earlier to relocating - the older one becomes the more difficult it is.
The idea of a lift from one room downstairs to the bedroom upstairs had occurred to my husband but I couldn't even think of it seriously. I didn't want anything that involved chopping up the house - even a hole in the ceiling!
A surveyor is coming tomorrow to discuss the stairs. Our stairs are quite wide but they do wind - there are two turns on the way up. So, we'll see!
I looked at my bookshelves and books this morning and imagined the task of sorting them out. Surely some would have to be sacrificed before a move. The idea of moving is getting less attractive the more I think of it. But I've decided to find out more about the stairlift first. It does seem to be the solution with fewer problems attached to it.
I feel I'm making a mountain out of this mole hill. And becoming a bit of a bore; so I'll stop now and thank you for your patience.
bienassis
it’s a tick box excersise which they get paid for. I had one a few years ago but when I got there he said oh I see you’ve seen your Rheumy team in the past 6 months so we won’t bother as they will have covered everything you need !
Sometimes you just have a review to continue the medication that they prescribe. It is also a comfort that they check your BP and weight at the same time and answer any questions. I would happily keep taking appointments offered even if it just a bum on their seat to be paid..
Thanks. I won't if it means taking an appointment from someone who really needa it.
But mostly GPs don’t prescribe our RA meds…they sign our prescriptions on behalf of the Consultant….but they can’t alter them …even if they see us.
In the present climate there needs to be thought as to who needs a f2f apt….These apts should go to those who really need to be seen.
I know where you are coming from but because my first biologic nearly finished me and now have to take heart medication, I am greatful that I have this backup for myself. But as said I go to these appointments because of my past and to keep my beta blockers on prescription. So although a RA appointment it is general health. My RA medication is delivered via Consultant.
My daughter had a baby 10 weeks ago and had all sorts of feeding problems and eye infections with him which were giving her cause for concern . Couldn’t get through to gp appointments and ended up calling 111 for help. The GP reception called asking her to bring baby in for a ‘check up ‘. GP could not have been less interested in the feeding problems or eye infection which had by then been treated . Didn’t even weigh him even though he hadn’t been feeding .
A complete waste of time and she ended up having to pay privately for a simple tongue tie release ( £200) which solved the problem and got him feeding again. Absolute disgrace.
While I’m sure there are some GPs who actually care about their patients, many are just milking the system for more money at the expense of people who need to see them .
Oh I am so sorry to hear that. No wonder you are angry. I am glad you got it sorted but so much stress and money involved.
It’s finding these caring GPs that is the problem.I only know one person in my area who is happy with her GP.
Luckily- apart fro this evasive prescription review I rarely need to ask for an appointment.
wishing you luck on your prescription review AC xx
Thank you….no doubt I will have to have a discussion with the receptionist…who will read out to me from her crib sheet that she has been trained to keep confidential about anything I tell her…even though she might have to ask how to spell half of it.
OK….. I need my prescription reviewed by someone who is qualified to do so…but why do I have to waste time discussing it with someone else? Please…… just remember to make my October appointment as promised back in July!
oh prescription reviews are a bane of my life. They did a review and refused a prescription for something I cannot live without. Had a very frustrating conversation with the receptionist and asked her to talk to the doc because it was so ridiculous. Got there eventually but boy was it frustrating. I was of course very respectful when speaking to someone who had no clue what I was talking about. 🤷♀️😤🤯
I suppose looking on the plus side if you ever apply for PIP your doctor will be able to confirm you have RA
Hiya Sheila. Yes, I did, 3 weeks ago, which makes me wonder if CCG's are pushing forward enhanced services at the mo. That & they're worth £10.06 per appointment, & mine was a double one. I did say before we started that I had a Rheumy appointment the following day so not much was discussed. I suppose with shared care they need to be up to speed with patients & the meds they prescribe them, & he asked about both MTX & prednisolone. He was also concerned about my recent elevated CRP & that if any of my meds were changed the next day I was to ask for him so he could rush through any new or amended script.
Not much help re what may be discussed at yours but I’d keep it, just to see if it's in any way helpful. They have requested it so not so much using up an appointment if it's being allocated?
Thanks for that. Yes, you are right. I haven't actually got an appointment yet. When they rang I couldn't find a day to go for 2 or 3 weeks with other medical appointments for me and hubby, funerals, child minding and 2 weeks holiday so I said I would ring them in October. I might ring next week.
. I chose telephone over face to face. It's not to alter anything but to see if they can help. Check you are seeing occupational health if appropriate ,do you need any support etc .It was good to know my care is being fully supported We moan if our Dr's don't get involved so why moan when they do. Can't please some people! You're not wasting an appointment because mine was with a social prescriber at the surgery.Its good to know the surgery are aware .
My surgery used to do this where things were measured such as CVD risk and osteoporosis for a short time before this was taken out of the Outcomes Framework which is basically a list of the things GPs get paid for. It then turned into a 20 min once a year meeting with my GP where no co-morbidities or lipids were measured which I agree was a waste of her/my time. However, our surgery now has a Physician's Assistant (not qualified to GP level, but some level of competency is in place) who called me in last year and this year for my RA Health check and DID measure my CVD risk (QRisk2 assessment) and did a FRAX assessment (osteoporosis) and also organised for my next blood test to include full lipids/cholesterol testing and measured my BP. All this is necessary for people with RA and is recommended in the NICE NG100 Guideline for treatment of RA in Adults, but is not being done routinely by secondary care rheumatology teams. So, as long as they are actually doing these measurements and assessments, I would strongly recommend that you go. If it's a 20 min. 'chat' about how you are and you don't have any additional health issues you want to discuss outside of your RA, I agree it can be a waste of everyone's time.
Ailsa - NRAS National Patient Champion
Thanks Ailsa. There are pros and cons. I didn't expect my question to encourage such a debate but it has certainly raised a lot of issues and some food for thought.
hi I had this problem with my GP , they get paid to question you and then tick box you, my Dr's don't even prescribe my meds for my RA, they refuse to, so my consultant has to send me my prescription via royal mail every time I phone up when I am low on meds, so I just told them I am not coming for a review for my RA with you, you do nothing to help me with it. So why should you get paid for nothing?? After their refusals to prescribe meds I don't even go for my flu jabs either anymore I go to pharmacist, i can't get to see GP either only phone calls! They get paid to give you jabs of any kind. My GP has never had anything to do with my RA except to refer me. Waste of time. Also they can't make you do anything either especially if they don't prescribe your meds, I spoke to someone I know at surgery and she quite openly said to me it's ridiculous, it's only to get paid . So it's upto you! Good luck.
I was surprised but very grateful to be called for one by my GP. He took a holistic interest in my health, found I had extremely high blood pressure and also assessed my cardiac risk. I felt “seen” in a way my rheumatologist never makes me feel.
Thanks for your comments
My Gp sends me letters asking me to book a review then never has any appointments
Thanknyou for your comments
Yes Sheila, I too have been told to make an appointment to see GP for the same reason. I have absolutely no faith in my GP surgery and end up arguing with a different person each time. Most of them seem to be newly qualified with a sense of self importance. I don't have a car and there are no buses to the surgery, so it's taxis there and back. I can't afford that so I just don't go. Four years ago I thought I had PMR as my whole body had just seized up after feeling awful for years. The GP didn't really know what that was and just sent me for a blood test. I insisted on some pred to tide me over and was diagnosed with RA a week later by a consultant at the hospital. He was excellent and suspected I had been living with it for years. He is now living in Australia unfortunately.
I'm afraid I only use my GP for repeat prescriptions now. I don't even have covid vax done at the surgery. I get mine done at the walk-in centre.
The last conversation I had was with a new doctor who wanted to take me off the antidepressants I have been taking for decades. After trying many others I finally have one that keeps me on an even keel. He just wanted to assert his authority and was quite happy to just take me off a drug he thought I had been taking for 2 years! They don't even read the notes on the screen.
Sorry for the rant, but they do seem to have plenty of time for things I don't want or need. And they don't seem to know much about RA. Well, not as much as we do........
Hi Sheila ,
I have an RA review with my own doctor every year under the shared care scheme .
I had mine last week and 25 mins had been set aside for it .
Before the appointment I had a blood test which included a test for glucose and lipids plus a urine sample . Also I was weighed , height measured and BP taken , all by a HCAS . From these tests I discovered that I was now overweight , was pre diabetic and my triglycerides were high as was my BP . . All different from last year . So I had a long talk with my doctor and was given advice
I was very grateful for this review . I never see the same rheumatologist when I attend rheumatology every 3 months . Haven't seen my consultant for years . So I find the RA review with my doctor , who knows me , invaluable
Thank you. That is very good. I have decided to make an appointment and take it from there.
I've always assumed that if you get a request to make an appointment to see your doctor it's because they have made the request. It's not a question of wasting time (yours or theirs ) it's because the doctor has a reason to see you. It maybe because they want to check if you are uncertain about anything. Discuss possible options or check information.
it sounds as if you go to one of the better doctors surgeries. Far to many can no longer get to see a doctor without having a good reason even then I've know of somepeople haveing to weight two weeks.
if I was in your position I would go.
When you attend these ‘gp reviews’ you often find out that your appt is actually with a health care assistant who actually knows nothing about RA. They follow a basic check list which includes asking who looks after your RA etc( which they already know from hospital records) but they do check your bp and weight which is useful. It would be helpful if they checked your cholesterol as RA patients prone to heart disease, but that doesn’t seem to be on the current list of requirements at RA practice check up. If these RA practice checkups we’re done with some thought they could be useful for both the GP and the patient, but if they are treated as a box ticking exercise for the purpose of practice income only, they become a waste of time for the patient and a poor use of practice time. Personally, after a useless attendance at one of these appointments, I have not attended any more.
Why not give it a try this time and you might find it useful. If then,it is a waste of time don’t go back.
Thank you for your reply. Good point.
Not what you're looking for?
You may also like...
GP thinks its RA. Awaiting urgent appointment
First rhuematology appt as my GP thinks I have RA
My 1st Serious RA Attack.
Appointment with Consultant to discuss Anti TNF treatment...
Had my rheumy appointment.
First NHS RA appointment soon
Poor services at hospital and my RA is deteriorating badly
3.30 today, appointment with my RA consultant
Had my rheumy appointment 
