Bit of a rant but need to get it off my chest . You couldnāt believe what I was told when I called my help line to ask for advice after a major flare up , ( both my knees where so swollen I couldnāt walk ) , firstly the help line is now closed permanently and e-mail is the only contact method I have, I sent an e-mail 9 days later I got a reply saying a nurse will call the following day. She called the same day which I was pleased about but after 9 days of taking matters into my own hands and juggling my meds ice and heat I was getting it under control , she said I seem to be working it out well myself š, I asked when my next appointment is to talk to my Rheumy and she said he has retired and you currently havenāt got oneš we are working on assigning his patients to other Rheumyās , surely in this day and age that would be done before he was released of his patients . He did mention to me he was taking early retirement as far as I know it wasnāt due to health . When you are taking potentially toxic drugs like Methotrexate and Pred , I feel you should have a number you can call for help at least within 24 hours , the last thing I want to do is head to A&E they are under enough pressure and these health conditions are so specialist they would have to contact Rheumatology anyway . Donāt know if anyone has experienced this , I was diagnosed with PMR 8 years ago and Sapho syndrome just over 2 years ago . The further into these health issues I get the more a lone I feel from the clinical people . Thatās just my experience anyway , hope you have a happy and pain free day šš
No Rheumatologist currently available š - PMRGCAuk
No Rheumatologist currently available š
That is really shocking, unusual and completely uncaring. I think you are going to have to become a complete nuisance and email the surgery every day with detail about the potential consequences of this neglect. As you say, you cannot continue on powerful drugs without supervision. Are you able to complain to someone who has higher authority? When resources are tight, those who make a lot of noise get them. Good luck and take great care. We are here with our advice and opinions based only on experience and research though.
thanks this site is worth itās weight in Gold . Over the years I have been helped so many times by the experience of others sharing their knowledge , long May it continue . And yes I am making a lot of noise currently with my e-mails especially as I am having surgery in June and havenāt been told anything about stopping MTX before the op for a couple of weeks , I found that out for myself .
It is hardly ideal - but if they haven't appointed a replacement then they can't just transfer you to someone else if all the other rheumies already have full lists for months ahead. You are likely to be ahead of a lot of patients since you are already on MTX and that requires input from a consultant.
But "in this day and age" - the NHS is on its knees as staff vote with their feet and leave. Would you work a 60+ hour week for the same salary you were on 10 years ago? Not that it is just salaries, it is conditions as well.
It does appear that response and medical support is slowly drying up, but whether it is just Rheumatology, or across the whole NHS, and the causes listed, politics, economics and the loss of staff.
My experience is relatively short, given I was diagnosed in early 2021, but medical support has noticeably fallen away since then. In tha time I have passed through the hands of three Rheumatologists having used the email to clarify requirements for blood tests and dosages. This is echoed by my diabetes support, which is secured at local surgery delivery, but given the the numbers of type 2ās in the population, self dependency is a taught mechanism of coping. However, sourcing the insulin continues to be problematic.
It would seem that effort for complex problems of PMRGCA sufferers might be better directed, but then the NHS has many other issues to solve. But, forums such as this, brings the collective mind to consider each of our symptoms, treatment and the path forward.
Not to be the āgloomy Gusā, but the likelihood that our NHS recovers to its former prowess, is fading as it is stung with criticism and the private sector grows more confident.
I keep telling my 4 daughters when they are negotiating salaryās in the careers make sure they have private medical attached especially while they have no pre existing conditions . In the future it will be the difference between life and death , my sister wouldnāt be here now she was told by a private a oncology consultant if she had waited for her NHS scan , (4 months wait ) the particular cancer she had would have spread around her body , fortunately for her it was caught early .
Unfortunately a very sad reality, and I suspect Machiavellian machinations to undermine the NHS, but thatās probably for a different forum. Since the Pandemic I have lost family members through real or perceived lack of treatment. Perhaps the nearest reflection of my circumstances was a brother-in-law, an army comrade in our teens, who passed away from advanced cancer that wasnāt diagnosed before it was too late. This forum has been an eye opener as my understanding of PMRGCA was ānilā, and I wasnāt even sure from what I was suffering and reading material on the matter is scant. My family are still in the dark as to what itās all about, which, can be probably levelled at a number of medical practitioners, too! My education in diabetes and self reliance, has allowed me to take up the cudgels in tackling PMRGCA and as the fog clears, Iāll find the path forward. More strength to your arms in the coming battles!
I think those of us that study our mutual conditions are pretty well informed after a 12 or 18 month period of research and advise from forums like this , but never really get a final conclusion as what to do about it . My GP actually said that I know more about PMR than he does and as far as SAPHO syndrome goes he had to Google it . Hopefully knowledge is the key to our power and we all continue to stay one step ahead of our conditions . Good luck šš¤
itās all seems to becoming the norm now. I recently started mtx and my Rheumy explained that Iād need fortnightly blood tests at my GP surgery, and sent a letter to them as such. I started the tabs and then waited a few days to see if Iād be contacted with blood appt times etc. No, nothing received, so phoned them and was initially told that I hadnāt yet started the mtx (?????). Replying that āyes, I hadā and a letter was sent about 8-10 days previously and I needed my first bloods taken. She confirmed receipt of such letter but by the responses I took it that the letters context hadnāt even been digested (looked at) and my records updated, or actions noted!
Our system (not the UK) seems more reliable - up to me. I get the referral for the blood test from the rheumy together with the one for the next appointment. I go to the appointments office - also the place you pay your co-pay if appropriate - who give me 2 appointments, the blood one being a week before the rheumy one. At the blood appointment I am given a log-on code to download my results from the website if I want to see them but they always go directly to the rheumy and my GP can also access them. I can have a blood appointment via the GP any time I need - if I phone to ask for one, I speak directly to her or I can go up to the practice where I am guaranteed to see her same day,
Interesting article in the press today about empathy.
A US study suggests ChatGPT is actually more empathetic than doctors, and gives better advice to most patients. A medical panel preferred the responses of the AI assistant to those of real doctors 78 per cent of the time when both answered the same 195 questions on the AskDocs forum of Reddit.It also found the answers given by ChatGPT were nearly 10 times more empathetic than the doctorsā responses.
I find myself looking back to years agoā¦.say around 1970 -2010, when I would have trusted the word of most doctors, GP or hospital ā¦..and I do wonder whether it was less a case that the service was better, and more the fact that without the internet and forums like this one, I was much less well informed. Doctors today have to be very good to stay ahead of research etc.
Empathy, however, does not rely on such knowledgeā¦.š¤·āāļø
It just seems everyone has become more selfish. People have definitely changed since Covid with these people who think they are 100% right and the rest of us are 100% wrong!
Sad but too often true, piglette š
Sorry you are having such a difficult time. I can only tell you my own experience and maybe I have just been lucky but it might be worth you trying A and E if you have a flare and canāt access the right care. I have been poorly since last October and diagnosed PMR February 23. Got symptoms of GCA over Easter and NHS 111 sent me to A and E. Did wait quite a while but saw a register who knew what was going on, did the right tests and I came home with treatment and a plan. Followed up within the next couple of days too. I know this isnāt a lot of peopleās experience but the NHS can come up trumps when it has to. Hope you get sorted soon.
itās heartening to hear that it does work sometimes
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