Until I developed GCA and PMR I had never seen one of these professionals. To be honest I had no idea what to expect, just like these two delightful conditions. It's all a learning experience and one feels in their hands to navigate the way through. We are facing an unpleasant situation with zero knowledge and most, if not all of us, require information. Will it go away, is there a cure, why have I got this, what is it, what can I do. When we are prescribed drugs we want to know what they do and what are the known most common likely effects of taking them. Most of us have lived a busy life with responsible jobs or running companies. Most of us have been sporty and driven. Most of us have raised families and supported the next generation bringing up their children. In other words, we know what life is all about and expect to deal with this disease in partnership with our medical professionals. Unfortunately this is not always the case. Some of these professionals are arrogant and dismissive of our input requiring blind adherence to their regimes. Each individual will have a unique story and circumstances that have led to their current situation and this is as important as the medication to control whatever ails them. For example I wrote a full description of how I had been affected, what I had done leading up to the collapse of my body and how it felt. I emailed it to his secretary before my appointment. My first Rheumatologist refused to read this and told me it was irrelevant. He wasn't interested. I erroneously thought he would be interested in the patient but it turned out he was only focused on the disease. I think some get so wrapped up in this focus they forget that they are dealing with an individual who can contribute better to the healing process if understood and included in the process. Some are comfortable in dealing face to face with these short sighted professionals. I did so and then changed my consultant. Others are less confident and I thought the charity could make a general representation to their professional body. This is not possible as it is not within the remit of its constitution. Having read so many accounts of dissatisfaction at the hands of many different professionals I still feel some such generalised representation to their bodies is appropriate. PM me if you feel strongly in favour of this.
Rheumatologists and other Medics.: Until I... - PMRGCAuk
Rheumatologists and other Medics.
My rheumatologist totally gets this. She has been the shining light in all of this and is a specialist in the field, as well as a patient centred doctor.
Dr Sarah Mackie - Leeds.
Jane, I think you are lucky to have her as your rheumatologist
As does mine Dr Michael Plant. However Jane there are many on here with dire outcomes. I'm hoping some of these good medics read this and make representation to their professional bodies.
I absolutely agree SheffieldJane. Dr Mackie is a rare and fantastic doctor. I feel she considers the whole person.
Hi cycli,I am DREADING feb.when I am under the care of a new Rheumy.My sweet little man has left for pastures new and I am going to be seeing the rude,non conversationalist who did my TAUS and shoved a lot of leaflets under my nose and confirmed my GCA.I feel that I am better equipped now to deal with her thanks to all the knowledge that I have gleaned from PMRpro,DL and others,but why are we made to feel inferior when dealing with these people??Do I look like a robot,plastic doll or numpty?Am lucky that I have told my dr that come hell or high water,I am sticking to DLs 7 week taper.Maybe they feel that people of a certain age are either thick and not capable of making decisions for themselves,or just lack people skills?Either way,I am not going to be spoken down to by anybody even if they have letters after their name.I have some of my own, NTBMW!( not to be messed with!)x😜
Good for you. Since this charity won't take up the cause it is up to us to make our feelings known. Give your rheumy a chance to see if she has changed her manner. If not be strong and politely tell her where she is going wrong. I have no idea why anyone in their profession develops this arrogance or seems to dismiss older people being able to make rational choices.
Hi Cycli,during my life I have had to deal with the public and in spite of some peoples attitude ,have always remembered my mother and fathers teaching of being respectful and having good manners.That is unless somebody crosses the line that is!In the early days of my GCA I knew nothing,said nothing and did nothing to upset the establishment.Felt that they knew more than me so should show them respect,but as I said previously ,armed with more knowledge,I shall fight my corner and make them realise that they should be talking TO me,NOT at me.!Cold today,but don’t feel like doing much anyway so relaxing after having my darling great grandson for a couple of hours!x😜
👏👏👏👏👏👏👏👏👏👏👏👏✊
The type behaviour you describe, while unacceptable and unsatisfactory, doesn't constitute professional misconduct in Medicine, the Law, Accountancy, the Police, Teaching and so on. Therefore their regulatory bodies have no role in this regard. Hence the charity has no obligation to get involved; indeed it would be inappropiate for it to take up such a complaint. Any complaint would best be addressed to the employer/ business of the person involved.
Like I have said before this forum has a stellar cast of experienced people. All we can do is bring it to the surface and make it known to the individual at thwe time how inappropriate their behaviour is.
Folks are often on their back foot during medical consultations which leads to frustration at the consultation post mortem on returning home.If folks are considering correspondence with busy professionals, for best results limit to one bullet-pointed side of A4.
So far I have had good advice and respectful treatment from doctors, just the GP so far for my pmr. What she did that I think the charity could encourage (and maybe does) was tell me about pmrgcauk, and recommend I download their information pack. That also led me here. And is good for solid background information and up to date research, when you have overstretched doctors with 10 minute appointments. I feel if I did disagree I can say I got my information from the charity which looks a reliable source.
Reading messages on patient support groups could be very educational for doctors 🙂
some of them actually do. Change needs to be quicker though and advice accurate and up to date. The message seeps through though.
how does that happen? GPs have so many conditions to keep up to date on, and not much time to do it. Charities like this seem such a useful concentration of knowledge.... whats the mechanism to update doctors?
The charity offers free membership to all medical professionals -so they can access any information that way.
Your GP seems to be aware of the charity as you mentioned in a reply., but other patients can mention that theirs..and hopefully that info can be circulated around surgeries.
The charity is small and doesn’t have resources to notify every GP in country -(was that was something else you mentioned in another thread?) - so it’s up to us as individuals and local support groups to be proactive.
If members contact charity, I’m sure they will send some literature for some to leave at surgeries/Rheumy departments.
There used to be information out there, but like almost everything else on paper, during covid much got binned..
im sorry rereading i wasnt clear, im not questioning the charity which i think is brilliant, and i have joined ......i wondered how the medical system itself ensures GPs hear of latest information on everything! You get a patient coming in for a short time with symptoms that could be all sorts of things, and need to sort it fast .... and from posts here there seem to be a variety of responses to pmr symptoms. Im a bit worried myself because its a new GP next visit and you don't know whether it will go well but at least I feel educated on the topic from here and will know if shes talking sense 🙂
Fine... but as has been said so many times in the almost 12 years I've been on this forum... the information, whether from the charity , from the BSR or NHS, doesn't seem to filter down to GP surgeries as well as it should.
I suspect it has always been that way, but that doesn't mean it shouldn't be better. I know for sure that if my original GP had been more aware of GCA then I wouldn't have lost my sight... and unfortunately that is still happening , some 14 years on.
Of course the global health events since 2019/2020 haven't helped the information flow of many things.. which is why I said as individuals we also need to educate our doctors - but in the correct manner.
Absolutely agree , after 5 years I still don’t think my rheumatologist thinks I have pmr don’t know what she thinks it is because she can’t answer that , I have no faith in any of the doctors
I TOLD my GP that I was not going to do the 5 week taper but a 7 week one.I told him about Grammy 80 getting to 1/2 a mg then a final push to zero only having her GCA rear it’s ugly full blown head again.,plus an awful diagnosis of Parkinson’s.I told him that this proves that the slower the better for me even though there is still no cast iron guarantee it will not come back!With OHs dementia getting worse,I am under constant stress and knowing that PMRpro is on a 7 mg permanent dose ,I do not care about being a Zero Hero anymore.It is what it is.Having GP on side means that I have support with what I want to do,the new Rheumy might have to be a work in progress!x😜😜
Personally, I’ve seen 3 rheumies, but all for different diseases, NOT for PMR, but, naturally, it was mentioned. My gut feeling is that they feel it can be handled at GP level, & shouldn’t be escalated to their level. Other diseases in that area are fibromyalgia and hypermobility, both of which I suffer from. When you see a rheumy for those, the norm is to be given a booklet to read & then dismissed back to the GP. In many cases of straightforward PMR why don’t they do that? I don’t know. But they don’t have much to offer to help, it seems. All they seem to try & do is get their patients off pred as soon as possible! This is not what most patients want & therefore you get conflict. Sometimes, I think, at that level, they are treating the disease & not the patient. The GP level, however, is there to treat the whole person, so the approach is (or should be) quite different. I have never, in five years, felt the need to see a rheumy for PMR. After my last appointment, which was to confirm hypermobility & discuss inflammatory arthritis, he became very agitated when steroids were brought up, he paced the room at my lack of ability to get from 5mg to zero, & told me to get off them within 6 weeks…if I felt sick, to plough through it, & under no circumstances to give in & increase. He gave me a blood test form for six weeks time. This was last August & I reported all to my GP, & if I need to see a rheumy I will go to another hospital. People shouldn’t have to dread seeing a specialist. But why go??? Just food for thought, & I appreciate that GCA is a different ‘beast’ due to the possibility of sight loss. As my Dad used to say ‘there are many ways of skinning a cat’!! I think if people read this forum, follow the daily posts, use the search field & the FAQs…then they may learn more than visiting a rheumy?!
The really good rheumies in the field are now acknowledging that they created part of the problem - they dismissed PMR in general as a simple, shortlived, benign condition that GPs could diagnose and manage, a wholly incorrect assumption. A whole generation of rheumies grew up with that and look down their noses at patients without a "real rheumatic disease". In fact, many of the dx's made by GPs turn out to be inaccurate - not just of PMR that isn't but not PMR that is. And the incorrect reading/understanding of a research paper years ago has resulted in this belief it only lasts 2 years - which it doesn't. Couple that with the terror they have of using pred and it leaves the patients in a right pickle.
I agree. All 3 that I’ve seen since I have had PMR have given me quality time for osteoarthritis, inflammation, happy to diagnose fibromyalgia (diagnosed by 4 rheumies now) and hypermobility (yes, I bent down & put my hands flat on the floor for each one of them)…but for OA I was referred to a hand specialist & podiatry department, for the other two just handed the brochure. I sort of got the idea that the things I have are easy, boring & they can’t help, therefore I could be dismissed & take off their list of patients. I had some really bad fibromyalgia symptoms once when I went…but just got diagnosed & the brochure! Looking back I think they were early symptoms of PMR!! The two year myth still carries on, though! Will be interesting to see if it ever changes, as a whole, but doubt if it’s in my lifetime!! S x
Hi Pixix,I saw your comment saying why go to see a consultant.As you say,GCA is a different beast,especially for somebody who has suffered sight loss through GPs not listening to my cries for help for 10 months.If I suddenly refuse their appointments ,I might be discharged to care of my Drs surgery,and
quite honestly,I think it is me educating them on GCA at the moment.Also,if an emergency arises ,I know I can phone nurses helpline and get help straight away.It is just trying to get some consultants to stop this mantra of getting off pred ASAP and listening to us!x😜🌼
I think it’s vital thatGPs have more training in order to spot GCA faster, & get the patients to urgent care in hospitals for scans & start on high doses of steroids. Then consultant can monitor them &, as you say, give them an urgent helpline. In my area the wait to see a rheumy can be up to 2 years, the norm being about 14 months, in my experience, & my referral was marked urgent. There is either not enough of them, or sometningbus being run badly…in England. Before I got PMR I received a letter to say they had gone through the record of every patient under the care of a rheumy & were discharging people back to the GP level. They said anybody can be re-referred, of course. I was quite happy to be discharged…at that time I had fibromyalgia & osteoarthritis & hypermobility.
Hi Pixix,maybe I was lucky in respect that once I was admitted to hospital with GCA the Rheumy was constantly on my case and have been for the last 23 months.Nothing has been too much trouble apart from this damn notion of whenflaring,bunging me right back to really high levels of pred,so yo yo ing became the norm for a while with drastic tapering!Now thankfully I have GP on side as I said previously and he is in agreement with my 7 week taper.I only get telephone appointments now from Rheumy every 3 months which is a blessing as I live quite a way from our hospital.So fingers crossed for early next year when I speak to the “ non conversationalist” when I tell her that I am sticking to my 7 week plan.Hopefully she will be ok,let’s face it,less work for them if I am well!Sad you had to wait so long to see someone.The system is broken and sad to say,it is going to be a long time before it is fixed!Your previous comment about GPs having more training regarding GCA PMR should be a given! Too much is put down to old age,OA ,when even though blood works aren’t perfect,in my case it would have alerted them to my GCA!Hope you are well?Sun is shining today,but of a chill but maybe summon up some energy to rake some leaves( but maybe not!) xx🌼😜
They are aware GPs need more training and a programme was about to be launched in the NE of England when Covid struck. And you know the rest ...
And yes - quite right, they are far to keen to fob us off with "your age". My GP in the NE of England tried me with that. A mere 51 and at the gym most days!!! I had to change my gym to one with a pool - couldn't cope with the machines. I made my diagnosis in the end - 5 years later. Luckily it wasn't GCA,
How lucky that you were able to diagnose yourself!As you say,lucky it wasn’t GCA!I had never,ever heard of it,but on reflection,when I presented to THREE different Drs at my surgery with bilateral neck pain,jaw pain throbbing temple and hip s that hurt so much I wished I was dead surely one of them should have picked it up?Still,too late now,cannot change things but the impact it has had on my life has been tremendous regarding driving etc.?Acceptance is a word that has taken a long time to become reality for me.Got snow on the mountains yet?xx🌼😜
It took me a long time on the internet! And I found it by accident on a GP's blog where he described a patient he had tried on pred having diagnosed probable PMR. It fitted like a glove and I suppose I fitted the description after my first dose of pred!!! He compared the tired, down appearance before with the bounce after! I had had scalp pain, jaw and thigh claudication plus all the stiffness but I didn't know then what I know now and no doctor ever asked those questions. I was lucky.
We've HAD snow on the mountains but pretty much all gone, the first lot was 13th September which is early but no unheard of. However - they started the snow cannons yesterday once the temperature fell below 4C up there. The lift was open at the weekend, people were still walking and biking up there. The winter season starts on the 30th and after weeks of sun and mild temps they have fallen to normal for the time of year.
I hear your words” lucky” but luck really should not come into it should it?When I rarely go to my Drs now,I sometimes look into his face and try and see any sort of guilt on his part but zilch!Nothing,,feel like saying something ,though I did after I came out of hospital but it fell on deaf ears really.Never mind,tomorrow is another day right?xx🌼😜
...,tomorrow is another day right
It is, and I learned long ago that it pointless dwelling on the past and what might have/should have happened... we would would all like perfect health, to bring loved ones back, but we cannot.
Life is full of "ifs and buts"... what matters now is how tomorrow, and all the other tomorrows pan out. Much of that is up to me.
I do feel lucky [and extremely grateful] that one eye was saved in time, and ignore the fact that one one wasn't.. I could wallow in self pity [and maybe did for a few weeks], but to be honest I decided that's boring and self destructive, and also made me miserable to be around.
Very true,make the best of what we have and the joy I find in my family,pets and garden.Of course I am very very lucky that I have the other eye,even if I do have MD in it,and for that I am grateful.Just wish that garage door bolts and rose bushes would leave me alone!.m🤣🤣🤣🌼😜
True… and people/things that come out of the blue from the ”wrong” side …🫣
Rather appropriate for a rugby fan?
Yes… and definitely a touch of the ‘blues’ at the moment - absolutely bl@@dy rubbish!😵💫
No comment DL🤣🤣🤣🤣🤣Think I will stick to my cricket but they ain’t too sharp at the moment😪
You mean I'm not missing much?
Not you’re not…
Yep,and yer don’t see them!I use a cane when I go out,not because I need it,but to make people aware that I have sight issues.Problem when I go into our local pet store,dogs are allowed and when they see the ball on the end of the cane ,they chase it!Makes my day I tell you.And another footnote,had my leg dressed again yesterday after the bolt incident,and the nurse when she removed steristrips could not believe just how quickly it was healing!Guess now I am getting lower on pred my body is getting back to normal or nearly normal eh?xx🌼😜🦮
Good to hear about healing … and yes early days I carried a walking stick for just that reason.. also used it since for hip/knee before replacements - but it’s resting in the umbrella stand at the moment. Long may it stay there… 😏
I’ve given up waiting, but my appointments have never been for PMR, but the other ailments I suffer from!! My GP is excellent,vaso is very popular in the surgery!! S x
That’s lucky but as you say,if you can’t get an appointment what’s the point?xx😱🌼😜
Absolutely! Makes sense that the best Dr is always full, everybody wants to see him! If it’s urgent I see anybody but with 12 diseases I’d rather see the guy who diagnosed most of them!! S xx
12! My word,that’s an awful lot !!What a burden,or are most of them being controlled?😱
I have Polymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Asthma, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration…& just waiting for results to see if I have Type 2 diabetes!! Right now, it’s too heavy a burden…as the temperature drops & the damp increases, a lot of them worsen!! Life is naff right now, as I wait for steroid injections to be done, which will help a few! Think the pain of it all is the worse, tbh…chronic pain for 12 years, but much acute pain atm!! Am seeking more help! Thanks, S xx
OH MY !What a heavy load you are carrying,you poor love.😪Hope you have decent heating and that you wrap up well when you go out?Shall not moan about all my OA everywhere and lower spine problems plus a few other bits and pieces,they all pale into insignificance with what you are dealing with!Do hope you are given adequate pain relief and really ,really hope you get your cortisone jabs soon.I have to wait another 18 months for mine in lower spine as I refused surgery.My heart goes out to you.xxxx💐😜HUGSxx
Thanks, very kind of you! Sadly, the new pain patches stopped working. I think it’s because they swapped to another (probably cheaper) brand. I have an appointment with the pharmacist at our surgery on Monday! You’re not alone, I’m not having surgery on my spinal tumour…it’s too close to the spinal cord for safe removal!! Happier walking with pain than being in a wheelchair again (had a few spells of learning what that’s like)! Taje care, S xx
😪💐💐💐xxx😜
Thank you for everything you have said.
I could not agree more. I almost wept.
I am going through a similar experience with Occupational health at my work place.
I am just over one year into being diagnosed with PMR but had signs and symptoms for 8 months prior to that.
During those 8 months I reported to my employer, I was struggling and we had no idea at that time what it was ( was going through tests at the time)
They were not interested.
After diagnoses and being off work for 9 months with extreme fatigue & cognitive issues and being told by my GP " it's as good as it gets.. for now" I reported back to my employer. I gave them a full account of everything, the disease, what has been done between me & my GP, how it was diagnosed, the issues with steroids, my adrenals in hibernation & consequences, a suppressed immune system etc etc
HR could not be bothered to read it.
I saw an Occ health nurse and he had no idea what I was going on about.
I had to insist my account was read.
I was then sent to see an Occupational health Dr.
He had not been sent my account either. He got everything wrong, would not listen to what I was saying, tried to destroy my GP's actions, tried to rubbish all the advice from this fantastic help group, then tried to get me to complete seven double sided forms that had nothing to do with my condition.
An absolute disgrace.
During the entire misserable experience, I had brain fog, was shattered & my vision was blurry. I am also in the middle of another flare and waiting for plasma viscosity blood results.
Anyone with half a brain cell could see I was not right and not functioning.
It is soul destroying.
As you say Naim1 what you have experienced is a disgrace. I hope you are in a better position now.
Absolutely shocking,disgraceful,just a few words I can use but would like to add a few more!!🤬🤬🤬🤬🤬I really, really hope you can get some help through all you are going through.Ignorance is just NOT acceptable.My heart goes out to you Naim1,and I wish you well.love and hugs.xx💐💐🤞🏼😜.
Thank you so much.
It is hard enough dealing with the disease.
Fighting with systems & so called 'professionals' leaves me completely drained.
What is even more soul destroying is you cannot complain or do anything.
They close ranks, support each other & twist everything to meet their needs.
😩
Absolutely,made to feel that we do not know what we are talking about,as I didn’t in the early days but a lot more informed now thanks to this forum.We have just got to band together and stick up for ourselves.As I said in a previous post………Our bodies ,our disease!xxx💐😜
I very much support the idea of raising awareness of the two related conditions and congratulate PMRPro for alerting us to the ongoing research by brilliant and passionate medics. It is good to know that our illness is being researched and knowledge gained. We should all do our bit to raise awareness where possible but sadly our individual relationships with our own medical professionals can lead to frustration if they are less well informed. While I agree that these professionals should be keeping up with current research I sadly don’t think the PMRGCAUk charity is in a position to promote that thinking or challenge the industry. That said, Lucas Coutin who works for the charity has put together an excellent video about real experiences of PMR to raise awareness.
I have personal experience of challenging the medical profession in legal action thirty years ago for medical negligence, firstly on their “duty of care” and later on evidence of genuine negligence. It took years of my life, cost a lot of money, and I have never got over it. An out of court settlement just before the hearing has left me angry and unfulfilled.
I am aware that I take those deep resentments into any consultation with senior doctors and this colours my expectation and attitude. This year I have had more dealings with specialists and consultants than I would have liked, and pleased to report that they have all been positive experiences.
PMR should stand for PAY ME RESPECT and we should not have to fight for that.
Has a nice ring to it . Make it a slogan. Sounds like you have been through the wringer. The British Society for Rheumatology and The General Medical Council are the two main professional bodies that are relevant. It's worth an approach. They would then be responsible for letting their members aware.
How are you at campaigning Cycli? If you published some of your verse it might get attention. It’s so very on point. You should get some published in the charity’s quarterly magazine and get a team together through it to launch a campaign. Maybe even an international team, it seems that PMR is poorly managed all over the world, well the world that reads forum comments.
I think all the fight in me has gone now, although I strongly believe it contributed to my PMR. I maintain a strong sense of right and wrong but it gets me increasingly into “bother “.
I'm pretty good at getting a result Zebedee44. I'm going to make a general approach and see what response I get.
academic.oup.com/rheumap/ar...
The RSRheumatology is revising it's guidelines for PMR, last published in 2009. The European ones date from 2015.
The scope of the revision of these guidelines is discussed above and is well worth a read; even though it excludes some important aspects, such as diagnosis. Obviously it depends very much on what it eventually comes up with, but it seems that they are proposing to look at a lot of the issues that have been frustrating forum members over recent years. Not ideal but hopeful. One interesting remark in the preamble is to acknowledge that 25% of patients have an illness that last >4yrs.........that is something of a mind shift on their part.
This may go some way to re-educating medical folk.
I have to say - I do wonder if "the average age at diagnosis" still holds, given how many younger patients are on the forum alone. But above all - the target audence needs to learn that an "average age at diagnosis" of 72 does NOT mean that someone in the 50s and early 60s can't have PMR. Which we still hear far too often!!!
Agreed, but investigating that and other demographics would need a nationwide audit....fat chance of that in the current funding climate.
Merely less emphasis on the "average age 72" and "it lasts 2 years" and more emphasis on the variability would be a start. They ALWAYS start their preamble with the things that are becoming out of date but that is what sticks in the awareness. Openmindedness, "can last from months to many years" would be helpful!!!
Hi All, A lot of sad tales told here but one of the strengths of this forum is it puts things into perspective. I have a more positive tale. My PRM story started off with the, I've now found out, the traditional taper 15 -> 12.5 -> 10mg. I failed at the 10 hurdle twice and just at the time I was back at 15mg for the third time I had an introduction to this wonderful forum from my sister-in -law who suffers herself. I'll be forever grateful to her. Anyway after a couple of days reading and reflection on the experience and common sense on the forum it was obvious that this traditional taper, which I have printed on 2 or 3 advice notes from the GP practice, was far far too fast. I went back to my GP, by this time I had insisted I see the same GP even if it meant waiting. (I'd had 4 different GP's before this). We had a frank discussion and at the end he agreed to go with the DL 5 week taper but starting first with a week at 15 and a week at 14 and then start the 5 week DL taper from 13mg as I has been fine with 12.5mg previously. From 13 to 12 to 11 to 10 with the taper. This has worked and next week I go for 10 to 9.5mg. My GP heartedly agreed supported by the Rheumatologist I saw 2 weeks ago fully - he could almost be part of this forum: it's not a race to zero, slow and steady, if you top out at a few mg per day so what, quality of life at 73 is to hang on to. So I really appreciate how lucky with the professionals I ended up with. They are there good luck in finding them. best wishes to all
Those are a rheumy and GP to hang on to - they listen.
glad you have a good story to tell. The more the better. Some have a different story and I wanted to get a handle on how many and how bad before I do something about it
It is probably of no comfort cycli, but things are the same in the States, something I've discussed with my rheumatologist. He's considered an offering to GPs about GCA...but he knew it would not be well attended due to the rarity of the disease, the overload in the medical field, and the shortage of doctors. In the UK, it seems to be budgetary issues; in the States, it is insurance companies and drug companies as well as 'corporate medicine' where the doctors sign contracts with umbrella medical groups for financial protection from personal liability.....but the problem often lies in the bottom line. $$$
Another point I think we have to keep in mind is that many of your specialists over there work hard in researching these diseases; there is so much to learn. Would it be wise to initiate an adversarial relationship between them and the charity?
Here...in Indiana...I've had to stand up for myself and as a result....we talk and discuss, I know that is not always possible. My rheumy is the ONLY one in Northwest Indiana. My choice was we work together or I travel a longer distance than my husband or I could handle. I understand your frustration...and I don't know if this has helped, I hope so. The problem is global at this point for many diseases.💞
Thank you Grammy80 for this thought. I have no intention of initiating an adversarial dialogue. Bringing to the attention of the governing bodies these behaviours is informative. They need to know some of their members do not subscribe to their published guidelines.
It's difficult, it is only a small charity and certainly not, as far as I know, in its remit to make such representation. It is also not something that does/has affected everyone in the same way. As I have said before I have had nothing but excellent, if not outstanding service from my GP's whether it be for appointment, arranging tests, prescriptions, hospital check ups and all things medical. Particularly during Covid. Likewise with my own opticians and the extra service//s they referred me to. I have never needed or been referred to a Rheumy. As an online forum, and don't get me wrong, an excellent forum that has helped and enabled me take PMR on board, I wonder how representative we are of the whole country, are we the unfortunate ones where, diagnosis, grumpy and overbearing medics have been involved? Is there a majority of sufferers who have had less/few/no problems?
If we are the majority then yes, something urgently needs to done regarding the training and the attitude of a lot medical staff and others at all levels of the hierarchy. I suspect that the main hope for that is for those, like Dr Mackie and the others we know about, to continue to drive things forward at their level. There are also a few research programmes well under way about the treatment of PMR/GCA and the attitude of medical staff to their treatment choices and attitudes/behaviour to their patients etc, which hopefully, might/could lead to better insights and training.
Whatever takes place it's not going to be an overnight change, but let's hope things start to move in the right direction across the country.
I doubt “we” are in the majority… as said on many an occasion, this forum is skewed by nature of things. So in all honesty how representative of all PMR/GCA patients is it? Probably something we’ll never know.
If you sail through PMR or GCA relatively easily with good medical support [there may be few who do] then this forum is probably not required, ever.
If you have a relatively easy ride, then you may a spectator, but not a contributor.
You may be on another social media site, just use the charity helpline or attend a local group.
Or just get on with it - as it was 30 years ago, A large proportion of patients probably aren't online - or not in the way we are at least.
Yep, that as well… 😊
It's a bit of a conundrum though. In real terms I sailed through PMR relatively easily with no problems at all from Ped. The lack of Pred problems is down to luck and I don't generally seem to have any problems with medication generally. However, although my PMR journey was pretty straightforward that is also because I found/was directed to this forum and with the wonderful help, support and advice from all here, I was able to ask the appropriate questions regarding medication, tests etc. and be listened to. Without the forum my journey may well have been different - we will never know. Being very IT literate and used to being on the computer and online every day is probably also a huge advantage.
"Being very IT literate and used to being on the computer and online every day is probably also a huge advantage."
Exactly - but we know there are many people with no such skills or who are afraid of "social media" so their side of the story is unlikely to be heard anywhere.
There has been a project on why there is apparently less PMR in the north of England - and I am absolutely sure that while working on it, the wrong questions may well have been asked or the right questions NOT asked, I suspect that there is an iceberg of PMR patients there - most of them have never been to the doctor about their symptoms so don't even know they have PMR - and nor does anyone else so they appear in no statistics anywhere.
"Less PMR" in the North, I can't see any obvious/sensible reason why that should be true. As you say, wrong questions and/or possible assumptions of heavier manual work up North leading to further assumptions that it is just aches and pains of getting older.Not sure how we can get around the IT and Social Media side of things. Not sure that the Social Media sites are the greatest!! for accurate information either, if you don't understand what you are doing they can be very "misleading".
All true..not saying the forum isn’t very useful - I certainly found it so early days… just saying it perhaps doesn’t reflect everyone’s experience with PMR and/or GCA.
I have been told in the past by patients [local groups and zoom calls] when I’ve suggested joining, they have looked at it and think it’s depressing because - “everyone on it has problems”.
Needless to say, I put them right..
Agree with it all, but you can also understand someone looking at the forum for the first time could very easily have that thought, which would probably apply to most online forums whether about cars, health or anything else.
I feel it is important that the forum continues to accommodate all folks ,no matter their age or their degree of IT dexterity, varied health beliefs, or general health knowledge. The confident 'doing great' folks may not always be so and the poorly 'up to their eyes in all sorts of medical, social and family problems' folks seem to benefit greatly from the backup that the forum provides. It seems to fulfill a role that NHS is no longer able to do due to poor GP availabilty/knowledge in some areas. The fact that it represents only a proportion of the entire PMR population is irrelevant.
I totally agree about the forum, it is essential and does an excellent/outstanding job in filling the gaps there are in certain areas of the NHS, both medically and area wise. A problem for this forum and online services generally is that our ailment tends to affect the older generation, many of whom are neither able nor willing to go online. So, the question would be, how does the amazing knowledge and experience amassed by all our members get to those people?
It's also a general problem as more and more Government/council services/initiatives are only available on line.
I do think the charity would have a problem if it tried to present itself as speaking for everyone with PMR/GCA. However, there is nothing to stop individuals or a group of people getting together and writing to the powers that be about their/our individual experiences and where and how things could be improved to give, hopefully, everyone an equal and good experience.
thank you Bcol. Exactly the point I would encourage. A well considered and short summation of ones experience and how one expects to be considered would be appropriate.
I wil be going over those very points, plus others, in my interview next Tuesday. Perhaps we could put together a letter base, with appropriate addresses on, that people could adapt/complete with there own information. I'd be happy to email it to anyone who pm's me or could even make a link available on the forum. I'll try and put something together if people wish to send me things/points they want to raise, but I am in the process of moving, hopefully, for the last time so it might not be instant.
The problem is that there us no such ' power that be' that would fulfill the role you are describing. The Internet has transformed our ability to access information over the past 30 years; there are increasingly few people unable to do so. There is also no central body tasked with signposting folks either in person or online to the sourcesof info about relatively uncommon illnesses.
I agree, it was a bit of a rhetorical question, probably the teacher in me, but although the numbers are reducing it is still a problem for many.
The biggest problem though is that while there is LOADS of info available, it is generally in medic-speak and few punters can understand it and interpret it correctly. I've been translating from German to English and medicalscience speak to something more in the direction of the Sun for many years - it ain't easy!!!! Doctors rarely succeed!!!
British Society for Rheumatology and The General Medical Council. These are the powers that be Sillydogsmum. Just write to them. It is their responsibility to inform their members of patients dissatisfaction with some of their Members professionalism and lack of empathy. It also behoves them to inform them that notions of a 2 year term for the diseases is out of date and that people younger than 50 can develop PMR and GCA. It might also be helpful to stop talking of frozen shoulder and consider PMR.
"The Internet has transformed our ability to access information over the past 30 years; there are increasingly few people unable to do so. "
Totally agree. It is a new world of information accessibility, but sometimes the old fashioned written letter or picking up the phone has more effect when trying to get your point across.
The GMC is responsible for registering doctors qualifications, settings standards of conduct and for disciplining doctors if in breach of those standards. It has nothing to do with clinical matters other than those being brought into question as part of the disciplinary process. Ring them up, they will explain I'm sure. The various Royal Colleges are responsible for training, standard and guideline setting for general medical and surgical disciplines i.e general practice(RCGP) and general medicine (RCP). Various smaller societies deal with specialist disciplines eg BSR. The medical journals have letter pages. Eg British Medical Journal and Annals of Rheumatic Diseases, are very widely read and they may publish well thought out letters from the general public if you wish to reach a wider medical audience.
The BSRheumatology is revising it's guidelines for PMR, last published in 2009. The European ones date from 2015.The scope of the revision of these guidelines is published on the British Society of Rheumatology website and is well worth a read; even though it excludes some important aspects, such as diagnosis. ( see my previous post)
The GMC and the BSR don't have the responsibilities and behovements you suggest.
Wonderful . That's more like it. You are perfect to join in this venture. Let's PM each other and take it further with Bcol.
Thanks cycli but as a non uk resident it wouldn't be useful to you, and I feel that your objectives are somewhat unfocussed. Complaint about performance? Failure to follow guidelines? Lack of non internet patient information? From my point of view any such wing flapping is not timely given one might hope that the Charity might take the opportunity to publicise the new guidelines to the relevant medical professeional on completion. That's hoping they are an improvement on the current ones!One useful immediate thing might be to make representation to the BSR to involve patients in the new guideline, similar to the stuff Bcol was recently involved with.
At least one patient is always involved and Janice Maddock from PMRGCAuk is on the board I believe.
I've had the afternoon to think this through, particularly with the extra information that we now have and I do agree with Sillydogsmum that just writing a letter/s to the organisations you mentioned is probably pointless. In terms of individual medics then a PMRpro says it is the hospital or trust that would be responsible so individuals would need to send their thoughts/complaints through the usual systems in place there. Let's hope the new guidelines if/when published are an improvement and that the patient/s involved are not ones who have happily sailed through with no problems. I'll report back after my interview on Tuesday, which as the last one will include information about the problems other have/do suffer.
The biggest problem though is that while there is LOADS of info available, it is generally in medic-speak and few punters can understand it and interpret it correctly. I've been translating from German to English and medicalscience speak to something more in the direction of the Sun for many years - it ain't easy!!!! Doctors rarely succeed!!!
Doesn't mean an approach to test the water with the powers that be isn't appropriate or timely. Accepted that the charity won't do it but nothing stopping someone affected by what we have.
Not sure anybody said that.
I'm just trying to get a feeling for an approach based on peoples experience.
Doctor Khurshid is fantastic and has been for me since 2020.
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