Morning everyone. I have discussed my journey with you before and issues I have had, which most of us have had, in getting a diagnosis.However, even though I have a diagnosis of MCTD - primarily Sjogren's, with secondary Fybromyalgia I am still having problems with my GP and would be glad of any advice.
My GP has never acknowledged or discussed my diagnosis. Five weeks ago I started with a flare - pain and fatigue, then developed sinus issues and severe headaches, dry mouth/throat, along with severe congestion. I contacted my surgery only to be told as usual, there were no appointments but a doctor did issue antibiotics and steroid nasal spray.
A week went by and I contacted the surgery again as I still had a fever and, by now, I had developed a really aggressive cough. The cough has been really severe, leaving me gasping for breath (its really frightening), vomiting and, i hate to admit it, but made me lose control of my bladder and bowel at times. Again, no appointments for a week, but they have booked a telephone appointment for next Tuesday.
I've felt desperate, but hankfully, it was the Easter holidays and being a teacher, I had booked holiday so didn't have to call in sick.
I doubt very much I will be well enough for work next week and, dreading talking to my GP and my manager next week. I know it might sound pathetic, but my GP has undermined my condition/symptoms from the start of my journey and I'm intimidated by her. How do I deal with her? I feel that if she doesn't take my diagnosis seriously, how can I expect anyone else?
Thanks in advance, J x
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Arrange an audience with the Practice Manager and explain your problem. Not least, being a patient with a very complex medical history being handed abx and nasal spray without you being seen. A GP nearly killed my husband by making assumptions instead of sending him for a walk-in x-ray and he didn't have a history.
There will be different links for Wales or Scotland.
If the Practice Manager is your doctor or the senior partner then go straight to the ICB (what used to be called the Clinical Commissioning Groups) for an impartial partner. Emphasise the breakdown in the relationship with your GP. I suspect they haven't mentioned it because they are totally out of their depth and haven't a clue. They need a swimring - it's called CPD, Continuing Professional Development. And YOU refuse to see her, ask nicely for a different assigned doctor. Don't shout or have hysterics - just say please very nicely can I ... Tears are acceptable
If your cough is causing incontinence and difficulty in breathhing when you have an episode - I would call 999 and explain you have been refused emergency care at your practice. That is heard all the time at the Call Centres. The paramedics may be able to arrange an emergency f2f consultation for you or they may consider you are in need of something more.
Yes, I am in the UK. Thank you for your reply, I have felt totally understand my my GP for several years. When I first to her with my symptoms, she told me that it was anxiety and reminded that I was 60 not 30, so not to expect to have as much energy... I eventually had to go private to get some help and, thank god I did! She's not acknowledged me since. I've managed to get a call with a rheumatology nurse next week as well. Hopefully she will be more helpful 🙏
You really do need to get away from that GP though - and a complaint is justified. She is sulking at being shown to be wrong and hasn't learned that patient and their spouse do sometimes know more than her. I had the same experience when the GP was wrong about OH's cough and in the end he refused to treat my daughter who was obviously clinically depressed which was hardly surprising. He shouted at me and asked why I stayed in the practice as I was always interfering. The only reason was OH didn't want to leave - lord knows why!
For OH I had got what was required from the oncology department - me interfering again after his colleagues diagnosed him - but for my daughter it was harder. I went directly to the local childrens mental health unit from which she had been recently discharged. They agreed with me and told me to go to a GP in another village. Best thing I ever did, I explained the situation, filled in a form and was seen 20 mins later. Hamish was brilliant and even visited when passing to ask how my husband was. Eventually my husband agreed to switch too and we never looked back.
I agree with PMRpro. The first GP I had when I moved about 9 years ago was dreadful. I actually made an appointment with the GP in charge of complaints after 2 years and said I was going to have to change surgeries even though they were the easiest for me to get to. She then gave me the alternative of choosing whichever doctor in their practice who I would accept as my GP. This was great suggestion as there was a lovely GP there who understood much better and now knows about lupus, APS & Sjogrens. So it is worth talking to the practice manager and explaining your problem with your current GP. I tried to stay calm and polite talking to them and briefly described the problems I had had with the original doctor. They listened carefully. If people don’t complain about problems then the senior partner won’t ever find out. The doctor I complained about has now left the practice altogether.
I hope you can get some better help soon, but please do follow the suggestions to get current help with your cough. It sounds like you need to be seen asap. When I had similar symptoms it turned out to be pneumonia, and Covid is another possibility. 999 sound like good idea to me.
CTD can cause memory problems & some times we forget all the valuable advice our GPs give out. It might be an idea to record the consultation to help with your memory. I would also recommend you get a copy of your GP medical records. There might well be further advice in there that you have forgotten.
If you make a complaint the GP will almost certainly lie & twist the evidence to suggest you have a mental health issue & they are doing thier best to manage it. The alternative is to confess that they made an error. I think that unlikely.
Keep the complaint short and highly focused on a few short examples that you can prove. Then allow the GP to respond & be braced for them blaming you.
At this point it would be very useful if you happened to have recordings to help your memory & medical entries that demonstrated the GP had been dishonest in thier response. You could then simply point this out to NHS England ( or whoever) copying each paragraph "Our medical records show XYZ..." aganist the actual medical entry & point out "Your records actually show A,B,C..."
DON'T BE INTIMIDATED BY YOUR GP. They are the ones that made the error. They should be intimidated by you. Take a deep breath, be firm but speak in a soft friendly voice. You wouldn't want to have to pay for treatment again in breach of the NHS constitution would you, and I'm sure your GP wouldn't want that either.
Thanks for your reply. I'm going to see what happens in my telephone appointment on Tuesday. As for forgetting advice, my GP has never actually given me any. At the start of my journey she would never acknowledged that my symptoms were anything other than anxiety, I've never had a face to face appointment with her even now. I was so desperate that I asked if I could just see anyone at the surgery. By this point, I could barely get out of bed, riddled with pain, excruciating headaches, always cold, nerve pain all over - I eventually saw the surgery nurse. She referred me to a neurologist as she suspected MS... obviously, it wasn't. She then referred me to a rheumatologist and it was he that told me straight away I had Mixed Connective Tssue Disease, secondary Fybromyalgia and Raynaurds. He saved my life and assured me it wasn't all in my head - my mental health at this point was really bad. I started steroid injections and various meds and things settled for a while, until new symptoms began to develop. At this point I wasn't due to see my rheumatologist for 3 months, so contacted my GP again as I didn't know what to do, asking if the new symptoms could be related to my diagnosis, she said no... When I eventually saw my consultant he confirmed that it was and it was Sjogrens. This latest flare has reached new levels,. I normally push through, but this time i know I can't go to work and need a sick note which I'm dreading asking for. Anyway, I'll put my big girl pants on and deal with her in a very professional way. But the one thing I do need to do is what you suggested, get my medical records. I'd never thought of that. Sorry for the essay 😅
Don't apologise for the essay. It's important that we tell our stories.
My experience was very similar & I have been left with life long disabilities as a result. I was referred by my GP to a local rheumatologist who I was told had a special interest in Lupus. 2 years later I found out they had no experience at all as my local hospital sent all cases to a hospital in London.
My GP then made medical misdiagnosis of health anxiety which is when the abuse started. Standing over me screaming, calling sarcastically after me along the corridor & I was in so much pain. Not even a pain killer prescribed.
When I made a complaint to NHS England the GP lied. Two sides of A4, paragraph after paragraph. The hospital consultant, waited for the GPs reply & embolden by it then opened up about patients being set to London.
I wrote back explaining the GP's response was not trueful & this was the sort of behaviour I was complaining about. I did as I said to you & compared what was written with the medical records. I cut and pasted them one under the other. I found this really hard as I was so emotionally involved. I'm an accident inestigator, criminal prosecutor & warranted Government inspector. When I showed the Principal Inspector they read the first 3 points & looked over thier glasses at me & said I assume you will be sending this to the GMC.
I refuted what the hospital consultant had said copying in articles & guidance from Lupus UK & letters from private rheumatologist which contradicted them. I suggested they get competent advice which they did.
NHS England broke off contact at this point. Hurtful but with my legal experience I knew this meant they believed I had a legal claim. I didn't sue. I had suggested the local Rheumatologist suspend Lupus work until they had received additional training. I later learnt both the Rheumatologist & the GP had left the NHS. The GMC weren't interested as expected.
My sister-in-law is a GP. When I opened up to her about it & she read what had happened & the response, she said to me that she felt ashamed that someone within her profession could act like that. It is not socially acceptable to talk openly about how the NHS fails, but they are simply a collection of people, some good, some bad, some make mistakes, we all do, & I think we have to openly acknowledge that & learn from failure. To my mind that is the only way the NHS can improve.
What you say about your symptoms are very similar to what my wife had a few weeks ago. When she tested for covid she was very positive. Just a thought and worth a try.
We have a very good helpdesk in the rheumy department which is staffed with very knowledgeable and helpful/understanding nurses. It is an answerphone system but they do ring back as soon as they can. Could be worth a try if you have this option.
I ended up in tears once having a blood test because my last appointment with a GP had been so poor. It was when I had aching joints and fevers for the first time and this GP said it was post viral joint pain.
The nurse who was doing the blood test asked if I would like to see the practice manager.
The practice manager then met with me. She was really good about everything and since then I did not see this GP ever again.
It was very easy, they were concerned as I was so upset.
Hello dear, i feel your pain dealing with gp. What i've done is over exaggerated my symptoms and asked to be referred to rheumatology consultant straight away. After that point i never needed gp. I formed a good relationship with my consultant and the nurses so whenever i need anything i can call them directly. Hopefully you get sorted soon
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