Has anyone here had to actually teach their GP what their condition involves? Mine actually expressed surprise that SSc can involve the bowels/small intestine so I do wonder if he knows anything at all about it. I am tempted to give him a five minute lesson (tomorrow) just so he understands a bit – it feels weird to have my primary carer know nothing about my condition. Is it worth a try or will I just come over as patronising?
Educating GPs: Has anyone here had to... - Scleroderma & Ray...
Scleroderma & Raynaud's UK (SRUK)
My GP is actually very good and knows a lot about it. However i did go once when there were 2 students with him, about something entirely different. They were both really keen to know more and asked if they could question me about SSc as they had never come accross it before! I was really impressed that they were so interested
My go asked me once if I was sure I had it because I didn’t have much hard skin. Think that the name is misleading.
I suppose we do have hard skin – but with systemic scleroderma it's invisible, on the inside? It is for me, anyway.
Pinkcat, I would love to have students present to talk to and explain what's happening to me. This condition is so lonely, I do feel terribly unsupported (which is why this site is so useful!).
Sorry I know I’m coming a month late to this but my GP was also unaware when I mentioned it. He said “yes it’s hard skin that’s the literal meaning (pretty patronising) but it wouldn’t normally affect the bowel significantly unless it’s very advanced”. So I was really pleased that a colorectal surgeon wrote a letter to him after a long phone conversation with me - explaining exactly how systemic sclerosis can often affect the bowel - quite graphically!
Mind you even my rheumatologist - who specialises in Lupus - wasn’t sure this was my problem when we spoke last week and have me this alternative scenario where a few of her patients with “not such well defined” CTDs - especially Sjögren’s (which I have) can also cause severe constipation. I had to point out that yes I know this and so did the colorectal surgeon - so his knowledge about both diseases seemed more extensive than hers. And my antibody is highly specific of systemic sclerosis - usually diffuse - and is often associated with less skin involvement
I’m not sure that the kind of constipation I experience tarries with Sjögren’s dryness or autonomic problems - it does feel somehow more mechanical. But even if she’s right I’m glad that the surgeon sent that GP a letter blinding him and his colleagues with the science of the bowel problems of systemic sclerosis! He was the one who put me on the low formal diet for IBS - which did me no favours at all because I don’t have issues with fodmaps!
I’ve come across this many times. Because it’s so rare not many GP’s have dealt with it. I accept that but what I don’t is when you’ve been back to see same doctor a few times n they still haven’t made any effort to read up on it. I’ve had scleroderma for years now n have pretty much championed all my own care even sometimes with the so called ‘specialists’ They will look at you incredulously probably but stick with it. It’s your quality of life that’s at stake. A lot of folk think google is a bad thing but it’s helped me investigate many treatment options etc that I would’ve never even known about and also confirmed a lot of my symptoms. Good luck
I think google is wonderful. I have only just (two years in) found out that bronchiectasis isn't the main lung symptom with SSc and that the link isn't at all clear. Nobody told me, I just worked it out. I was advised by my gastro man to "keep your own notes" – so I do, in great detail!
Yeah I think that’s sensible even if you are lucky enough to get knowledgeable consultants. Good plan!
I keep lots of notes, and turn up at appointments with print-outs of the highlights and lowlights since the last appointment, plus a list of questions. I have several copies with me in case there are students in there too. The consultants like it that I have everything organised. It helps me a lot too because I can spend a week or more thinking about questions and don't have to remember them on the spot. They still like you to talk through things, rather than them just reading the hand-out, but I have my notes to refer to and so do they. On one occasion when I was rather tired the consultant picked up that my notes didn't match what I'd just said about a medication dose - and the notes were correct.
I wholly agree with you. I have the rare erythromelalgia & Reynaud's (treated at the Royal Free scleroderma clinic). Yes, Google saved my sanity since none of the GPs at my surgery had clue, just dismissed my horrible symptoms as arthritic & age (which is the "go to" diagnosis for the over 60's) My local rheumatologist literally couldn't care less. I began "educating" a young and willing GP but he left the practice so now I am back to square one. I get a blank look when I mention my condition and ask them to look it up. Just because something is rare doesn't mean you haven't got it! A wonderful support group supplied me with a list of knowledgeable specialists so I was able to ask for referral to the Royal Free. You really do need to educate yourself and then others.
I do relate. I have Erythromelagia too and had to ask my rheumatolgist to write it on my diagnostic list. I explained that every time I have mentioned EM to a GP they look at me askance and one actually said “I think you’re trying to say Fibromyalgia but pronouncing it wrong”. My rheumatolgist looked horrified and said “oh it’s no completely different - I’ll write it on top of my letter with Raynaud’s and small fibre neuropathy”.
Yes thank heavens for Dr Google but I do wish it wasn’t all such a huge amount of work for us all though.
I have been lucky so far. The GP that diagnosed me - his mother in law had it so he was familiar with it. My next GP I just asked him straight on my first consultation whether he had much experience with it. I was again lucky as when he was a med student, his mentor was a rheumatologist who had several SSc patients who he met and were used to help him develop his clinical skills (taking a history, examination, learning how it affected their life to develop empathy etc). I have not yet met my current GP, only spoken to her once on the phone, in order to get put on the Shielded list, so we shall see....
So, very patchy. Unfortunately I rarely get the same GP twice these days so no chance to build up a relationship or increase their knowledge!
Hello to all and pinkcat26!
This is a difficult one to answer as we expect our Drs to know answers and they are not omnipotent.
I was 'misdiagnosed' this year to have Amyloidosis (reach for Google again!) Why?
Because the symptoms can be similar. Spent lockdown having shed loads of tests , going to hospitals (safely) Consultants also went down the Amyloidosis route.
It wasn't until I had a final SAP scan (reach for Google again!) that Amyloidosis was ruled
out and escaped possible chemotherapy route treatment.
Amyloidosis consultant team specialists suggested rheumatology route instead of haematology late August and after a private consultation (essential as lockdown finished and many people on list for NHS) rheumatologist suggested NHS route as the best way forward.
I guess that unless we visit a consultant who really knows this field ie a rheumatologist....
we expect a lot.
Many responses detail their expertise after having scleraderma for while. We do become experts and this empowers us .... although exhausting and exhausted. I hope that eventually Drs will become knowledgable (and interesting to note about younger ones being informed?)
Yes... this website empowers and informs and gives people a route to let out feelings, ask and question other experts( ie The Ones with Scelroderma!) Even the terminology is confusing eg systemic sclerosis, scleradoma, diffuse etc .
Take care all in this 2nd lockdown and reach for the keyboard !!!
Have to limit my sitting due to sclerotic knees!
It took me several years to convince my GP something was wrong. I'm sure he thought I was a hypochondriac. I was eventually referred to the hospital for investigation. GP - each time I went for help with the various symptoms he just kept telling me, 'we've not seen this disease before.' Sometimes I had to see the practise nurse who wasn't helpful either - I dared to ask her if she knew about systemic sclerosis and she very sarcastically answered 'no but I'm learning'. I've always had the urge to tell them to Google it then they might be able to help me but I don't dare. My latest frustration is that I can't get put on the list for priority online shopping. I had a government letter saying ask your GP to confirm that you are vulnerable. I telephoned him and he said NO, you're not in the very vulnerable category and refused to authorise it. I am 80, systemic sclerosis, Raynaud's disease, stage 3 kidney disease, breast cancer, I can't carry bags of shopping as joints and muscles too painful, I've just been in hospital for heart and lung issues. I'm refused the shopping priority because my cancer consultant considers me too frail to operate so I just take a cancer suppressant drug. GP says because I'm not having chemotherapy, I can't qualify for priority shopping.
What a miserable GP you have! There is no reason not to sign you off. I hope someone can help you with your shopping.
I was faced with the same issue having shopped with Waitrose for years. You have to be a current customer of a supermarket, I found out, to be able to access the vulnerable person slot. A friend told me in the middle of the first lockdown to register on the government telephone site that I had no-one to help with my shopping. I did this and within a few days I received a cardboard box of food which I never expected, followed by an email from Waitrose offering me a vp slot. I then called the number back and said I had help with my shopping. I received one more box of food but then it stopped. Hope this helps you! X
Oh that's just awful, you have been very unlucky with your GP. It's appalling that he won't just sign the thing for priority shopping. I can't understand it, it wouldn't hurt him, it just sounds spiteful. I have bronchiectasis as a result of SSc and apparently the very word "bronchiectasis" automatically triggers the "extremely vulnerable" algorithm – I didn't know anything about it till my supermarket told me! I don't suppose there's any chance you can change GPs?
My GP may be uninformed about scleroderma but at least he listens and doesn't patronise me. I am so sorry yours is just making your life worse.
I was mis diagnosed by my GP since January, when I showed symptoms of Raynaud syndrome and nothing was done about it.
In May, I noticed my fingers were changing, swollen, and becoming claw like. My GP said its rheumatoid arthritis .
In July , I struggled to stand up and sit down in and out of a chair, without using my hands and wrists to help me up and down... My GP said I need to exercise more.
In August, the skin around my my legs and ankles was so tight, like it was going to burst and split open. I was told by my GP that I should put my feet up on a cushion take paracetamol and don’t drink alcohol.
In September, I was in so much pain, I went to A &E (due to lockdown) and was immediately admitted into hospital. After many tests, scans and muscle biopsy’s I was diagnose with Diffuse systemic Sclerosis.
I feel so let down by my GP, who wasted 6 months of my life where I could have had earlier treatment.
If only they would have put two and two together, or been bothered to look at their computer screen at my previous visits, they would have surely and clearly seen that these were classic symptoms of Scleroderma ??
Luckily, I am now under the care of the hospital who have been amazing and I feel so grateful for the treatment I have received.
I know this is a rare condition and GP’s cant be expected to know everything, but in my case, the clues were there all along.
Good luck everyone, I feel your frustration and pain
Hello Campari-king (Ian) it sounds like your GP has a twin brother who happens to be my GP. I started off with the same symptoms feeling like my skin would split. On a recent visit to my GP to ask about the awful pains in my legs he just said "have you been walking to Manchester and back?" And that was it. He didn't do a thing, nor offer any advice. I made another appointment and was fobbed off with a visit to the practice nurse. When I explain about the pain in my legs she said "put your feet up and if you're standing in a shopping queue do a little dance to keep things moving". Like you Ian, I feel let down. Hope you find some satisfaction eventually. Fingers crossed.
I don't expect my GP know about every rare disease but I do expect them to find out all there is to know when they get a patient who has one. I recently had to change GPs. They had been sent my notes from the previous surgery, where I had eventually started to educate them, but when I had my new patient consultation
she took my blood pressure, temp etc and just said 'You're fine". Not a word about the Ssc so now I have to start educating them.
My current GP who I went to with depression said "well at least you've got your health!". I had already explained a tiny bit about SSc ("lungs, hands, oesophagus, guts") so I gave him such a look he was embarrassed. The next time I saw him I explained bit more. The additional problem in the practice I go to is that you rarely get to see the same GP more than two or three times in a row so you're always starting again.
I find that seeing the GP is like getting the car fixed. They want to know what part needs fixing this time, and dont want to know any background or about the previous visit and the outcome of that. All down to time pressures I expect. The worst occasion was when a GP at my practice began the consultation talking about routine health check, bloods & BP now due and so on. When I started talking about why I made the appointment she got impatient and said " I must get on". Charming. I was so surprised I could not think of a rude reply.
Like everything else in life it depends on the individual ...... unfortunately. Had a variety of GP experience locally - most recently a patronising explanation of how lupus can affect the skin and whether it might be a stress reaction. Really?! Does this person know how engaged and proactive your average lupus patient actually is?
I do wonder if he would have suggested a Covid stress reaction if I'd been a man! Sorry, but this 'anxious woman' pigeonholing by certain GPs is a particular bug bear of mine and many other women I've heard from with complex and unpredictable symptoms. It took all my energy to not launch into a swear fest! #raging Rant over!
If only we could clone the 'best' (most knowledgeable, compassionate, respectful, blah, blah, blah GPs and deliver them (Amazon like) to all Primary Care Surgeries in the UK!
You may "come over as patronising" but at least you'll maybe feel like you've been able to make your case.
Just realised your post was 4 days ago ..... so, how did it go?
It was okay thank you! He did listen so I took the plunge and asked him to refer me to Professor Denton at the Royal Free. He was a bit puzzled about how it could help but I persisted and he duly wrote. I got a letter back from the RF asking me to book an appointment online but needless to say this resulted in "no appointments available" and a request for contact details so they can ring me. Well, we'll see what happens!
I hope you get a fairly quick appointment as a new patient, usually a clinic will keep a few slots open. This morning I received my second cancellation for a follow up at the Royal Free, now it is a video call at the end of July next year. Nearly 2 years since my last visit. Pandemic pressures!
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