So for the past two years I've been back at my childhood GP surgery as I've been living with family. It was good in that my GP knew me since I was a child so backed me up against a crappy rheumy and helped me escape to a better rheumatology department. But other than that my GP surgery basically avoided getting involved in the lupus and sjogren's issue altogether and said I'd have to rely mostly on my rheumy as they didn't have the expertise.
Last week I moved back to London (which is where I lived before I moved abroad) and I needed to register with a new GP surgery. I was really frightened about doing this. I did my research but to be honest all the local surgeries had bad reviews online and I just thought I'll have to try and if it goes wrong I'll keep moving until I find a good one. In the end I went with a GP surgery that was an NHS teaching GP surgery. It had a a few 1980/90s qualified doctors managing the practice and a good crop of fairly recently qualified doctors (so from 2006 onwards) as staff GPs.
Well it turns out I lucked out. My new GP qualified in 2006 and the difference compared to the care I had at my childhood surgery is HUGE. This is tough to write as I like my childhood GP very much, and I don't feel the care I received from them was bad, it was honest care. They were clear about their limitations and I appreciated that hugely. They didn't gaslight me or dismiss me. But equally they couldn't help me. The contrast with the new GP is staggering.
I thought it would be helpful to outline what the new GP did that I loved. I mean I suspect she is a gold standard level GP for lupus/sjogren as I've NEVER had a GP ask me these questions, not even when I lived abroad and had really great care. So if your GP doesn't do this it does NOT mean they are bad, they are likely normal. But I hope by writing what she did that I thought was great it shows what's possible and what I hope one day will be the norm.
Once I told the new GP I have lupus and sjogren's and I'm currently taking hydroxychloroquine she launched right in with the following questions:
1. When did you last have your bloods done?
2. Are you getting your eyes tested by an ophthalmologist?
3. What are you taking med-wise and who's you're rheumy? (NB she said rheumatologist not rheumy
4. What are you doing about the dryness? She then prescribed me hyloforte drops which she thinks are better than the ones I currently use and a saliva spray but says if I don't like it go back to her and I can try salivix pastilles. She emphasised the importance of making it a habit to put drops in my eyes regularly etc.
5. She told me to go and get a prepayment certificate for my prescriptions as it will work out cheaper
6. She recommended that I drink a minimum of 2 litres a day of water, to consume liquid rich and fibre rich foods and to try to add a tablespoon a day of flaxseed or linseed to my cereal or yoghurt to try to avoid constipation as she finds this happens often with sjogis. Because sjogis are so dry it means we get backed up without realising it and then every so often our body produces excess mucus to try to flush the system which can cause IBS type symptoms. So the diarrhea or loose stool episodes we might experience infrequently could actually be the body trying to deal with constipation. Sorry if that's a bit TMI!
7. She then asked are there any symptoms or problems that happen regularly that she should know about?
8. And finally she asked if there was anything new happening at the moment that I want to tell her about?
She then said to me: "These are really tricky conditions and I'm sorry as it must be difficult. We're still learning about the immune system and inflammation can affect the body and organs in so many ways and produce all kinds of symptoms that it can be hard to know what is lupus, what is sjogren's and what is something else. But whenever you have an issue we will work the problem as best we can to get to the bottom of it."
I just thought this was exceptional practice. It literally blew me away and I had a little cry when I got off the phone. I honestly have never encountered a GP like this before. Again, that's not to say if your GP doesn't do this they are bad, I think my new GP is likely exceptional and I got very very lucky. But I just wanted to point out after years of difficulty, frustration, fear and stress that I can finally say there are some good ones out there and if we all persevere and try to get the message out about what good care looks like maybe their numbers will grow.
I have wondered if newly qualified doctors might be better versed in lupus and sjogren's issues - maybe the training changed? It's not lost on me that all the GPs at my childhood surgery qualified before 2000. Whereas at my new GP practice the majority of staff GPs qualified after 2006.
Anyway... keep the faith friends! Change is afoot in the medical profession. There are doctors out there who have gone out of their way to get informed and want to help and the more we try to explain our condition and what we are looking for from those who treat us, the better it will get. Don't lose faith and don't settle if you feel scared or unhappy! Courage! x
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Insomniacette
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Great knowledge, honesty if they don’t know, huge empathy and active listening to the patient rather than staring at the computer screen with their backs to patients.
In lupus we mostly don’t want the constant, “we know best from the docs”…and all that arrogant bluff and gaslighting.
Perhaps there is now an emphasis on AI inflammatory diseases in their training?
Excellent post thanks for sharing and very pleased for you! It gives me hope that somewhere out there are GPS that know and care 😃
Thanks Ingrid1234 and Hidden I made a decision to document good practice on here as well as bad. The main reason being that when I was experiencing the bad I didn't know if it was normal for the UK or if I was being demanding and the NHS just didn't have the resources - I felt a bit lost. Also I couldn't articulate what I wanted or what good care looks like, I just knew I was unhappy and frightened. So I decided if I get good care I'll write about it just like I would the bad. So there's a clear idea of what it looks like and it is more than possible on the NHS. It's not about expensive things it's about taking an interest, not being dismissive and being aware of our conditions from what I can tell so far. Anyway, I hope by outlining when I experience good practice I help others and also that it gives any medical professionals reading this forum an idea of what is appreciated. Have a lovely weekend all!x
This is so good to read - well done for posting. Interestingly my youngest son has just registered with a gp practice in London for the first time having been registered with us in Scotland for years but never needed a GP until recently. He said same as you - GP who called him was young and amazing.
She asked him about his family history and he mentioned heart and BP stuff on both sides but also that I have autoimmune diseases. She immediately picked up on this and asked for more info. He mentioned Sjogren’s - wasn’t quite sure about the rest so hedged and said lupus-like with scleroderma. He said he was amazed when she asked him if he had been born with heart issues or had facial rashes as a baby given my Sjögren’s?! He did actually have a facial rash and mini seizures briefly but a paediatrician wasn’t concerned and I wasn’t diagnosed then.
My GP practice is other than the family one where my children were born and raised. In those days on Island the GPs actually attended the births of their patients!
So I do know just what you mean about both types. Unfortunately now I have neither and even my lovely rheumatologist yesterday grimaced under her mask when I told her a GP had said I couldn’t have ondansetron because they can only prescribe to cancer patients on grounds of cost.
Also she raised eyebrows about the fact that I’m on 100mg Losartan for Raynauds and hypertension but am expected to monitor my own BP and they never monitor me even when I recently reported big swings and new PoTS-like symptoms. “I’ll write to them requesting 24 hour monitor and instructing Ondansetron for your Gastroparesis then will i?!”.
So thank goodness I can reply to your post saying I do at least get gold standard rheumatologist compared to below bog standard GPs who wrote Fibromyalgia on my notes instead of Sjögren’s - presumably because they can neither pronounce nor spell it!!
So pleased for you though - and great to read of new generation GPs being on the ball about Sjögren’s as well as Lupus! X
in reply to
I’ve yet to meet a GP who didn’t have to look Stills up and then was nonplussed and admitted they didn’t know what to.....“ how about another blood test then”....
Honestly, for me, careless and quick fibromyalgia labelling is the biggest sign of a lazy doctor who doesn't want to take the time or have the responsibility of dealing with a lupus or sjogren's patient... 🙄Fibro is the biggest fig leaf as it enables them to send you off to the neurologist and throw their hands in the air and say 'no idea, here have some painkillers', without any consequences... Totally fine if that's what you actually have, but if they haven't even attempted to figure out what's wrong with you and just label you off the bat I find it highly suspect. I have personal baggage on this mind you as my previous bully rheumy tried to do just that when I asked why he wasn't monitoring my lupus and sjogrens but it was so obvious what he was doing that I caught on early... Sigh. Thankfully my new good rheumy has not even raised fibro, she's fully focussed on treating the conditions I have, not labelling me with something else so she can ship me off elsewhere.
So sorry about your GP but really pleased you have an on-the-ball rheumy at least - I think one of the two is essential!
Really interesting what you said about your son - I do wonder if younger GPs and Rheumys are getting better training these days so have a better idea about the conditions. That's not to criticise older doctors, but for sure with conditions like Lupus and Sjogrens where new things are learnt every day it might favour visiting newer qualified doctors who might have the latest info and a better understanding...
Wow I am so delighted for you. What a difference it would make to us all if we received care like this, this is what we should be able to expect. No wonder you had a cry. It does give hope that one day we will all get the same level of expertise xxx
Hi I’m so pleased for you, it must be such a weight off your shoulders, I feel like crying when a doctor just listens to me never mind being so pro-active. I’m in the middle of a fight between my rheumy and GP over trying to get a sharps bin as both say it’s nothing to do with them. What can you do? You take care. 🤗
I'm really glad to read of your experience. I think you are right - medical training is moving on. Not only in terms of a little more knowledge about things like Lupus but in terms of how to deal with patients (I find younger doctors, including in hospital, less 'prescriptive' and far more likely to view talking to me as a two-way street, taking into account my thoughts).
In terms of GPs, the two, younger GPs in my practice (one in her twenties and the other early to mid thirties) do seem slightly better versed in Lupus, based on more recent training I would think. That said, I only see one of them - and also one of the older GPs (a woman in her mid to late fifties). Why? Thoughtful listening, thoroughness and compassion. Both of these women have these qualities. The older of the two GPs is more likely to contact my rheumy if she is concerned (generally having done bloods, etc) - but, for me, that's entirely ok. I have a fantastic rheumatologist and I simply know she is being thorough and wants to consult the expert. The key thing is that she acts.
This is so heartwarming to read. The striking thing is she asked you some really important questions which, to me, reflected she cares about her patients. Whilst recognising her own limitations she’s determined to provide the best level of care - she’s treating you as a whole person. 💞
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I am not leaving this group...
Thinking of moving into my GP surgery 
Be Careful What you Hope for! 
My Dentist didn't know what Lupus/Sjogrens was!
