I've been asked to a do a bit of a talk for some clinical staff and researchers at Leeds teaching hospitals about the benefits of involving patients. In other words - my words - listening to us. Dr Mackie will be speaking at the event and I'm just going to be there to add bits from a patient perspective.
So please share you thoughts, any good anecdotes and stories. I want to emphasise the benefits to the clinicians rather than scold or implore them to listen to us. For example it was only when a GP listened to me complaining how stiff I was in the morning and that couldn't get out of bed that he had a lightbulb moment and diagnosed PMR after umpteen visits and a lot of head scratching.
I'm including not just physical listening but doctors gathering feedback and learning from us through things like focus groups, the PMRGCAuk charity, this forum etc
Over to you ... I'm listening
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tangocharlie
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How wonderful to have our voices heard via you as our “ambassador”.
Two things come to mind:
a) the ability of the physician to ask the right questions and see the symptoms presented by the patient, in their entirety (as a whole), similar to your example
b) the ability of the physician to exercise flexibility when the patient is tapering, based on the feedback (symptoms) the patient is sharing…”textbook tapers” and rushing/pressuring PMR/GCA patients off pred often results in problems (the return of painful symptoms/flaring, and poor quality of life for us)
Thank you for your participation in this important engagement!
Ooh now I feel a weight of responsibility. 😀 I will mention I'm speaking on behalf of patients all over the UK and even worldwide who have shared their thoughts and helped me over the years. HealthUnlocked is going to get a good mention and hearty recommendation as without it I'd have been in dire straits
Only if they listen!!!! And that is what they need to do above all - not assume all patients are the same and a one-size-fits-all approach will work. I had a rheumy appt yesterday - I came away (after an hour it must be said) and felt heard, validated and a plan was in place to deal with the primary problem. And the discussion included the phrase "Quality of Life is paramount".
I second both of the above, particularly b) where I'm tapering as prescribed and a suffering a horrid flare-up. Would feel alone if it wasn't for this forum. It's so hard to get the balance right, and a real knock down when it fails. We get so much more from this forum than from the GP, between the fleeting six-monthly (if lucky) rheumy appointments.Thankyou for sharing.
………Which may be a source for your talk if you look at side bar posts/ FAQs.
I was struck how a case of LVV could be so easily missed as the symptoms are fairly vague. The only sign I showed was feeling unwell on 3 mgs of Pred inexplicably. Routine vascular ultrasound scans for GCA signs in patients with PMR should be considered.
This is only a very short talk, we get 10 mins each and we will be focusing on the key benefits of why bother involving patient, the advantages and WIIFM? s and how to go about it eg join forums, charities etc
I believe one of the most beneficial things the doctors and rheumatologists could do is refer new patients to the PMRGCAUK website, and suggest to them that they should read the FAQs. Also, to refer them to Kate Gilbert’s book.
My GP gave me a write up on PMR from the website at the time of diagnosis, and this brought huge benefits, as both this, and the Health Unlocked Forum provided the detailed knowledge everyone, who suffers from these conditions needs. This saves the NHS both time and money!
Good luck with your talk; sounds an excellent idea, and good of you to take it on.
Good point about some patients being well informed like the moderators on here and Kate. I think many professionals think we are all uneducated and with a bee in our bonnet or axe to grind
What an incredible opportunity to have someone like yourself who's so informed & who can represent the 'cause' 👏 You'll be brilliant.
- I think it might be helpful to emphasise just how important it is for not just rheumatologists specialising in the field of PMR/GCA, but for all relevant medical practitioners (especially A&E and out-of-hours staff) to recognise the signs and symptoms of GCA.
Two weeks in to my diagnosis I developed significant temporal headaches. I was fully aware of the need for prompt action and as it was a Saturday evening I eventually ended up at an out-of-hours surgery following an NHS-111 call.
I saw an advanced nurse practitioner who seemed baffled at my concern and sense of urgency and sent me home explaining it was a Saturday night and nothing could be done until Mon morning.....when I should go to my GP!
I'd expressed my concerns about the possibility of irreversible vision loss but she simply repeated herself and clearly had no understanding or recognition of how serious this could be.
I didn't know enough to authoratively self advocate at that early stage of my illness, and I was very scared. Thankfully my outcome was a satisfactory one. It could so easily have ended up as a catastrophic one though!
It's so important the signs & symptoms of GCA are checked out when appropriate, but there seems a definite need for medical practitioners to be better educated about the condition..
Very interesting Kendrew. I’ve told several nurses about my GCA condition when I’ve gone for bloods/various check ups/when I had the TIA. At least three of them hadn’t heard of it. Funnily enough my dentist had, presumably because of jaw pain being a factor? My optometrist had seen 3 cases in a 30 year career. He has been very helpful doing eye scans and regular check ups of eye pressures.
I’m pacing well but still getting crashes of exhaustion about once a week. It’s a puzzle. I wonder if I’ll ever get back to having better stamina and would love examples of people who’ve conquered GCA and are able to live according to what their brains want to do, not just the endless following of the body’s needs. Maybe that’s a pipe dream but I feel the great GCA weight dragging me down. I have no symptoms and am tapering sensibly, just intermittent bouts of debilitating fatigue. Maybe it’s the winter, Covid, other afflictions, I don’t know but I feel mightily fed up on the health front at the moment. It’s very boring for me, and I’m sure other people.
Apologies, I went off piste. I meant to follow up on Kendrew’s comment on the wider medical community knowing about these conditions and the point of having to self advocate. Got carried away…
Yes - but it meant you talked about what you NEED to hear - and you will hear it best by starting another thread. By the way - are your crash days after you have had a good day and done a bit more as a result?
Yep, I rambled on. That is the case, do a bit more then knackered. It’s working out what is too much I suppose. Hard to get it right. Have felt sorry for myself lately, sick of the ups, downs and just fed up of it all, end of year reflections I suppose plus the Covid. Grrrrh!
Tell me about it - you have my sympathy! The last 2 weeks caught up today - I was falling asleep on the bus back from a mammography appointment - heaven knows why I'd accepted a 9am appointment that meant catching the bus at 7.45!!!! Should have stayed in the bus, I might have slept - I certainly didn't when I decided to go back to bed!!!!
Ah Pro, I feel for you. Mind you a 9.00 am appointment and catching an early bus to get there. That’s hard core. You’re a legend! We’re probably all suffering this time of year with the floods and rain over here as well. Hopefully you’ve got some blue Italian winter skies.
Blue skies above the soup lying in the valleys!! It was glorious outside the hospital in a lower valley but it was still hanging on here when I got back. But it did clear and up the mountain it was lovely!
Another good point here for TC, on stamina and resilience often not understood by clinicians - you can do just a little more than usual like walk the dog an extra half mile on the flat or decide to change all the sheets on the same day after a family visit and absolutely exhaust yourself! I recall having to challenge myself to pick up a sock off the floor I was that tired ! That idea about doing a bit more every day to build up your stamina doesn’t seem to work so well with PMR. And to healthy people this sounds fairly pathetic !
I think mood is also something that is depressed by PMR. I was offered something by my GP at the outset to help but had to tell her that’s not it ! There’s something else wrong here ! In my younger days I did a year long course on CBT and looked at comparative therapies at Birkbeck. There was one we looked at ( maybe Egan- Rational Emotive Therapy) where if the subject said they felt depressed by something, the idea was to challenge them and say eg ‘ What are you doing to make yourself depressed ‘ . I dont recall it ever being mentioned that illness can produce a chemical change where you have to fight a bit harder to be happy on a daily basis. A course on Stress Management later did talk about the toxins related to stress but not illness per se.
No you didn't ramble on , it's just you'd get more useful replies in a post with a title say Recovering from GCA what's your experience? Or struggling with fatigue from GCA
I echo all your observations on GCA...would advocate the blood test for inflamation markers...after 4 visits to GP, the results got me called immediately into hospital. Eyesight protected, but yes, terrible fatigue.
It is helpful and I will pass on those thoughts where I can, but this talk is not specifically about PMR and GCA and is for a very mixed audience of researchers, quality improvers and all sorts of medics so I on't go into specifics about GCA on this occasion. So glad you had a good outcome, I've ben there myself with a GCA scare, twice and I know it is scary especially when it is obvious the juior doctor treating you in A&E is panicking because they can only vaguely remember a bit about GCA. Luckily in my case they Googled it and di the right tests and referals
It occurs to me that a very useful thing would be to have an official NHS summary of how patients with PMR/GCA and/or on pred are to be managed if certain symptoms appear and they seek the ED or other emergency care. A similar document could be developed for other emergencies in a chronic condition for the patient to carry and be available on hospital systems.
The Expert Patient initiative met with resistance from HCPs who though we couldn't possibly know anything about our condition. Endocrinologists realised longterm corticosteroid patients were at risk because of ignorance and the new red steroid card was developed. But the HCPs still haven't been educated as much as is required and that is where we meet problems.
Excellent idea to create an official NHS document about how to treat patients with our conditions. It is scary to hear the lack of knowledge eg. about Gca. Also about listening to the patient when decreasing the dose and not being rigid
Best of luck with your talk.I have found health unlocked a place where you can get great information.I am on Pmr/Gca,Nras,and Thyroid forums and i have gained a lot of information and advice.Everyone is so helpful,they are full of understanding as we battle our illnesses.
I think that sharing Overarching Principle D from Table 1 in the article "Treat to Target recommendations in giant cell arteritis and polymyalgia rheumatica" by Dejaco et al. would be helpful:
"D. Management of GCA and PMR should be based on shared decision making between the informed patient and the physian".
I underlined and bolded the word "informed" as that is the key. This principle can be for any health/medical condition.
Primary, secondary, and tertiary care physicians don't always have the time to read medical journals for all of the medical conditions they deal with. These journal articles make up cutting-edge, peer-reviewed, published research that will show up in the medical textbooks in the future. What they learned in medical school is often out-of-date, and more often than not, they had one lecture (or part of a lecture) on any one condition.
With access to these medical journals, patients are not just relying on "Dr. Google". Our healthcare professionals need to have an open mind and be willing to read any literature patients share with them. It doesn't mean that we are trying to show them up. We want and need to be part of the decision making about our health. Physicians have so much knowledge about so many conditions. Patients are able to focus on our own health conditions, so we can bring valuable knowledge to physicians that will be helpful for other patients with similar conditions.
Good point, I'm going to mention we are a mixed bag of people, doctors assume we can't do an educated Google but many, maybe most, people are interested in their own healthcare and understanding it. Certainly if htey've got as far as doing a Google, researching PMR and getting themselves on theis forum.We have experts on here like PMRPro, ex HCPs, scientists etc yet they lump us patients together as if we're daft and only doctors are able to understand
What a wonderful opportunity~! Recently I was involved in a study about GCA...it felt so good to have patient input requested...I'll share what my bottom line was, very much in step with PMRCanada:
I spoke a lot about HU and what great source of info and support, something very much needed.
#1 Spearheading increased awareness of the disease, especially in the medical field. Too many people with GCA get diagnosed in the States with flu, sinus....and lost sight. You folks in the UK are at a much higher level of awareness than in the U.S. I learned how to be a better patient with HU. HU was the key to many things in my journey.
#2 The importance of treatment being symptom-driven and the importance of having a doctor who truly listens to his patients and treats their inquiries with respect, and the patient needs to feel validated by him. I gave my rheumy DL's tapering schedule...and he uses it.
I'm so happy that you are doing this and I'm sure you'll do a fine job. Your sincerity and enthusiasm will make it such a sincere presentation....great!💞
Hi. I only got diagnosed after two years of such debilitating PMR symptoms that I was practically bedbound after my Rheumy did a Pet/Ct scan which lit up like a Christmas tree. Prior to this, my GP has spotted it as PMR and gave me a two week trial of 15mg Prednisilone which worked within hours. Even after that, the Rheumatologist said I categorically did not have PMR due to my age of 48 at the time. During that time, I’d lost so much muscle mass I can hardly stand up and have needed carers to visit everyday to help me to shower and dress etc.
I think as has already been said the wider community of health proffesionals need to have at least a very basic knowledge of GCA/PMR . In 4 years I havent met a single person in the NHS apart from my Rheumy of course and my Doctor who know what to do or what it is.
Brilliant opportunity to tell them about this forum. When l asked my GP a question, can't remember what it was now, l was told " sorry, that's beyond my pay grade" . This forum has pointed many of us in the right direction, if we can learn from it... What about the need for extra pred to cover flares . Things always seem to happen over weekends or long Bank Holidays. We need some " just in case" .
Bit like you tangocharlie, I was only diagnosed (at 56) after the then junior doctor listened to my suggestion of "could it be rheumatics?" (my mother's words!) and offered me a blood test which led to a PMR diagnosis. Prior to this, she had me referred for a course of physio which had a 12 week waiting list at the time! So pleased she listened to me and took those bloods!
Great opportunity and thank you for taking up the challenge. You’ve got great suggestions but I’d like to add:
This forum run by the charity is NOT like Google or a Facebook group. Patients using it are well informed and often spend considerable time learning about their condition.
There seem to be a lot of people with atypical presentation of PMR (& GCA) so please keep an open mind and listen to patient.
From my own experience with GCA, I would like doctors to be more aware of the condition. At the time I had presented to A&E with a CRP of 452! They kept me in and did all manner of tests but it took nine days for the correct diagnosis! During this time I was even asked by a doctor what I could see when I was loosing my vision at times! They finally came late on the Saturday evening with 60grams of predisolone.
Thank you for doing this tangocharlie. I think it is important for medics to be aware or to reflect on unconscious bias . As PMR & GCA primarily affects women over 60.
I remember feeling like I was at deaths door for 3 and a half months until I eventually was given a CRP test which registered 90. Trying to advocate for yourself when feeling so ill is awful. On a couple of visits I was told to take some pain killers and go out and do more exercise- when I was having to crawl up my stairs on hands and knees!. Some one else implied this was what happened when you get past 60. It was only when I explained to a senior GP that there was nothing wrong with me and then the condition was spreading accross my body that I got a CRP test.
Same here, kept being told I needed to do more exercise and get fit and that I was suffering from stress. I was beginning to get stressed after being ill for 8 months and fobbed off, but I had been fit and active before PMR which then made it impossible to move. I'm sure there is a large element of unconscous bias towards women even now, illness is all our own fault and we moan too much about it!
I complained about jaw pain and head pain for more than 4 months. My dentist sent me to as specialist who made me a night guard ( thinking my TMJ was off the charts). My primary offered me pain pills. Not one of my doctors ever suggested that I should get blood tests until I started to scream. It wasn’t until the tests came back with numbers that were not “normal” . I was told to see a neurologist who really was not sure what I had until I almost went blind. I realized that I had to fight for what I needed. Finally, GCA was mentioned. If it had not been for my ophthalmologist who suggested that I see a neuro-ophthalmologist I really do not know what would have happened. I was sent for a temporal artery biopsy which proved positive for GCA . The next hurdle was find the right rheumatologist. Most doctors never heard of GCA or said that it was mentioned in medical school. I finally found the head of a Vasculitis clinic who has been my rock.
A handout or leaflet in the waiting area of the Rheumatolgy dept or handed to the patient by GPs might be a good idea , if not already being done. Recently I have been given printouts for other conditions but never for PMR. I know it is a complex condition but the general features and treatments could be outlined with links to the PMR GCA charity support groups and forum.
There used to be [in the UK certainly] and from the charity I think, with existing patients taking them to GP or Rheumy Dept. … but covid put a stop to all leaflets etc being available - and the practice doesn’t seem to have been resumed.
When I first joined charity in 2012 I was sent a leaflet - but of course that was after the event - and it all costs money which the charity doesn’t have.
Though in fact - just the weblink needs to be advertised, and everything made available online for GPs to print off for new patients which they are supposed to do anyway. If you see GPs behind closed doors some manage it ...
We're trying to work on that in Yorkshire, make sure every rheumatologist in every hospital in Yorkshire has a stash of leaflets to give to patients, and maybe even read themselves, you never know. Ideally GPs too but there are so many of them they can't keep leaflets on everything. We need everyone to get some leaflets either from the chairty or download and then take to their hospital or GP
I've said to Dr Mackie that we need to make sure every rheumatologist in Yorkshire has a stash of leaflets to give to patients. I noticed last time I had an appointment the leaflet rack in the waiting room is back in use, mainly Versus arthritis leaflets. We also need to get every rheumie to jon PMRCAuk as they can do so for free
They don't NEED a stash - these days it just needs to be online and part of their handout habit, preferably printed but just the link will do for most of us.
That might be OK for the IT literate like us but some of the people I see in the wiating rooms can't find their way down the corridor let alone navigate the internet. Many people would rather have something in their hand with a number to ring. Leaflets still work, I like them
Yes - but the doctor or nurse only has to click and print - they all do it here and GPs should be doing it all the time anyway. I know GPs behind Closed Doors is a select particularly good set of practices - but they are fast enough to hand out info sheets there. Physios do it as well with exercises. Same principle.
It is a reality documentary series on channel 5 or 5*, can't remember which. One of the practices they have followed is in Bradford and Amir Khan who is the senior partner is also a Professor at Bradford and Leeds medical schools and is a TV doctor on Good Morning and the like. If all GPs had the same ethos his practice displays our problems would be over!!!
That's right - they have also been in Bristol. Slough and Birmingham. They have a mobile one now that they take to the carparks at the surgeries to help the situation since Covid.
Well done for doing this! What stands out from a lot of people on here is wanting to be listened to! It took me years after two arrogant Rheumies to find one that communicates! Before finding him I found HU, this stopped me getting too depressed and knowing I wasn’t alone. Thanks for doing this.
Yes. It always amazes me that we as patients and evidence on here what works and what dosen’t isnt taken on board and passed to the medical profession to follow, or am I in a dreamworld….Thanks again.
Good job, TC. Point out nicely that there is a power imbalance between doctors and patients. To lessen this they should adopt the golden rule and think about how they would like to be treated if they, or a vulnerable member of their family, needed help.
I would like to second Charlie1Boy's earlier comment. On diagnosing me, my GP put in the post some information about PMR pasted from the internet including links to the PMR GCA UK charity and this forum. It is a godsend having people to turn to and a reliable source of information in this moderated group.
The diagnosis (during covid) was after 10 minutes of her actively listening to my symptoms followed by a blood test.
But even then I only mentioned to her “oh and I feel so tired the whole time” as the conversation was ending.
And reading the lists of symptoms, I found there were things I had not even thought to say to her eg night sweats.
So perhaps there is a checklist of symptoms in human terms that might be useful to doctors - eg "Are you finding it hard to roll over in bed?"
Saga:1. June 2021 - Head ache, then neck then hip stiffness.
2. ESR and C whatever within normal range so GP refused steroids.
3. In desperation as I could barely move, took out of date prednisolone left over from my granddaughter's treatment.
4. Instant relief so told head of GP practice and had pred prescribed. Also given omeprazole and A acid which I refused to take. Previous problems with omep and no stomach issues with pred.
No mention ever about taking Vit D3, K2 or Mg to aid bones - just irritation that I wouldn't take A acid. That only came up through this forum.
Now in 6.5 mg pred daily and have just started methotrexate as prescribed by my rheumatologist. Was very reluctant but felt I had to give it a go as I can't reduce the pred and am quite still on this dose.
Perhaps you can weave into the mix a comment on their paranoia about Prednisolone whilst favouring MTX which in my book can be a worse drug. As we know not all patients get bad side effects from Pred and although many of us are long-termers, at low doses side effects are virtually non-existent and the benefits enormous. I speak from personal experience but also as an former HCP.
Well this might make you laugh. After 2 months trying to persuade clinicians of my general stiffness and malaise pre poly diagnosis, I was prepped up and ready to go for a hip replacement before it was called off at the 12th hour. After 3 months, I was finally diagnosed in August 2018. Now on 5mg and have been through the highs and lows as experienced by most others. Above all, a sense of humour and positive attitude wins through. I'm new to this group but find nearly all of the stories very helpful and inspirationsl Thank you all!
Snap, similar, I was recommended for shoulder surgery 'we'll shave a bit of bone off to free up the impingement' but declined it as wasn't sure if it would solve anything, and the orthopaedic surgeon had said it would be very painful and there was no guarantee I'd see any benefit. Eventually I got a steroid injection into the should which did the trick. I am VERY wary now of medical opinions and question EVERYTHING
Just seen that you’ve had 55 responses already! Do you need another one? Briefly. I developed PMR during the pandemic. Thought my medication was to blame. Stopped statins and others but no improvement. Got stuck in the bath. Gp asked to see me. As soon as I walked(!) in she said ‘I think I know what it is’. Checked symptoms on computer. Prescribed prednisone and the rest is history. She has been led by my account of what this forum recommends so no pressure to reduce steroids etc. she has been gracious enough to say she has learnt from me (your expertise)
It's great that you're doing this. I was invited to attend but unfortunately can't make it. Dr Mackie agreed with me that HU is an invaluable resource but one health professionals aren't allowed to recommend as it's not an official medical resource. I sing its praises whenever I meet someone with PMR.It was a physio who originally suspected I had PMR and sent me to my GP. I've been lucky in being well heard and supported by the rheumatology team at Leeds. This, and all the knowledge I've gained from HU, has given me confidence to stand up to the GP who said that once you're down to a low dose of pred that it's easy to get off pred fairly quickly. More education of some GPs needed!
It was great - very well moderated and no junk, as we now try to assure here, Without it, this charity and this forum wouldn't exist. But a few years ago they made "cosmetic" changes to look more trendy and supposedly attractive to younger users. Which would have been fine had it not made it very uncomfortable for anyone with vision issues to use. At the same sort of time they had a lot of accessibility issues and it was a nightmare trying to get onto the forum, notifications failed (sound familiar?) and then they changed the security, They ignored all protestations in their so-called request for feedback, and over time it just got harder and harder to get on the forum, it was so slow and we all voted with our feet - and came here.
So if there isn't an "approved" place for patients, EMIS was partly to blame and now they have been bought out so heaven knows what changes they will have made.
Sorry but I’ll be blunt - if they do not listen to patients, they will never learn. The same issues crop up time after time e.g. you can’t have PMR/GCA if under 50 or normal bloodwork, it’ll be over in two years, we need to get you off steroids asap, symptoms from steroids and adrenals not understood etc.
I've just had an idea. Why don't we (PMRGCAuk) organise a conference led by the patients about involving us? All the AGMS etc we are talked AT by doctors and the info we are given is often WRONG. Lets gather the medics together so they can hear our side?
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I'd like your thoughts on this one...
Anyone able to tell me about an MRA Scan please?
PET scan results and thoughts please :-)
In the A&E and need your help please 
Your valuable advice please 
