Hi All,
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