Hope you're all keeping as well as can be! So I decided this weekend to write a letter to my GP to ask to be referred elsewhere - I'm deeply unhappy with my current rheumy. He asked me to email him once I had my emergency blood results (my kidney wasn't functioning) then when I did he had no idea who I was - he literally emailed me "who are you?" and I had to remind him!!! Doesn't inspire confidence. The department is also not sending through my blood results despite multiple requests. (Yes this is the same paternalistic guy who called a nurse in when I told him I wasn't very happy and then diagnosed me with fibro when I have no fibro symptoms... this saga has not got better sigh). Isn't it amazing how trying to get decent treatment can actually leave you feeling more ill?!?!?
The problem is as I sit here trying to write this email to my GP I'm not sure how to go about it. Should I list why I'm unhappy with the current rheumy or explain that I want to be referred to a rheumy in London because the London rheumy is more used to dealing with lupus and sjogren? London is within commuting distance for me and I like the practice there. I'm just not sure so was wondering if anyone has any experience in this area and what you did to escape a bad rheumy and get referred to a better one.
I've already been told by the surgery I shouldn't hold my breath as it's unlikely they will refer me elsewhere... but I figure I should try.
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Yes and don’t take no for an answer. Unfortunately as hard as it is when you are feeling well you must be assertive with medical staff. It’s your health. I’ve had to consult PALS only once in 30 years of treatment and they were great. Also don’t take any nonsense from the GP. I just used them asa postbox/referral point as they are part of the red tape system. They can’t help me with my condition is far too complicated. If you receive any nonsense from them just ask to speak with the practice manager and make a complaint.
Thank you Hidden and Sarah74 ! I'm so nervous about doing this. Also because I've looked up my rheumy online and he has 4.5 stars on Doctify from patients and very good qualifications. Makes me really worried that maybe my expectations are too high or I'm the one with the problem and that maybe he's a good rheumy and I'm about to land myself with an even worse rheumy. None of the patient feedback is from patients with sjogrens and only one of the feedback patients is a lupus patient. But they all say how wonderful and lovely he is - that is 100% not my experience at all. It's just all very frightening. I don't trust this guy to do right by me, particularly after the way he treated me in the last appointment, but maybe the landscape is even worse out there and he's actually on the better end of the spectrum in the UK... all very frightening and exhausting. Anyway, it'll come good in the end - it always does - I'm just in the middle of the difficult part that gets me to the end! I can't thank you enough for your advice on this though! Really helps! xxx
I did this ( am in edinburgh) but asked to be referred to a consultant in the same hospital department as the one I found unsatisfactory. I gave her a few reasons but not too much detail. As a precaution my Gp reluctantly asked for me to see him privately just to test the water. Despite trying to pay my new consultant hasn’t sent me a bill (5years ago now). This has worked very well for me.
Yes I have done it several times. My first Rheumatologist was so dreadful I walked out of a consultation.I lives in Wales and I was referred out of county to Hereford. When I became very frustrated by the increasing number of diagnoses including low grade lymphoma I was referred to St Thomas’s in London. I wish you the best of luck. I would definitely include everything that you have mentioned here xx
I seem to be in the same situation with a very sympathetic Rheumy and a arrogant useless dermatology clinic. My problem is that I don't think a second opinion with someone else who is in the same local health authority and would rather be seen at a Center of Excellence which is outside the local health authority and GPs who are completely in the dark and are trusting the main hospital in the health authority so trying to get a referral outside of the area seems to be impossible even a few years ago.Not seen my Rheumy in two years and just got a video text in the Spring. Dermatologist Clinic is run by a consultant who is arrogant and from the little I've seen of him (once) came across as a bully who didn't think he should listen to the patient but thinks that it's a simple thing to have a 2 second look at a rash and change the diagnosis from one to another even though the second type of skin disease is considered rare and has little to no research. That leaves me thinking that if it's that rare just how many cases has he come across to give a diagnosis in 2 seconds? Even with my own extensive research I have found that both of the skin diagnosis that I have been given are in a group of 8 that not only are misdiagnosed but a very alike and that two of them are so alike that they could actually be the same disease but with two different names. So it's take your pick or should I say it's up to the individual consultant to flip a coin.
♥️
It is probably different for people like me in devolved regions but I have been referred for second opinions via the NHS - but only within my own health board area.
I have had about 7 Rheumatologists in 9 years. The last one phoned me once and asked me who had put me on such a high dose of my immunesuppressant? My reply - “you did!”
My GP practice have been hopeless and unsupportive over trying to get second opinions in the past and complain on their website that there’s now too much email traffic?!
What I’ve noticed is that a great rheumatolgist isn’t necessarily one with expertise in one rheumatic disease - although that maybe helps if you only have one straight forward rheumatic disease.
However I have scleroderma and SS overlapping and the scleroderma rheumatolgist was the one who couldn’t remember me and who had to Google SS.
The one I see now specialises in Lupus - which I don’t have. She’s lovely and not afraid to override her colleagues nor admit that she doesn’t know that much about scleroderma. But she can ask others who do - or else I can - and then we put our heads together over the phone at 6 month intervals or less and decide. I think a general rheumatolgist who is prepared to listen and learn is probably better then one with a single specialism but unable to think outside of the box.
Good luck getting a referral to London.
PS did you put your full name and patient ID at the top of your email to your rheumatologist? Not a good response from them if you did. But in the recent past I’ve forgotten to put my full name and DOB in top and then had a similar response back despite my name being part of my email address. They do get a huge amount of email traffic so I have learnt not to assume that anyone remembers me by name only.
Thank you cathie, CecilyParsley, Newby12, Boudica1 and 282523. Great advice and also good to know I'm not alone - although, also how sad that I'm not alone!
I'm so struck that so many of us have such similar experiences. I've written to my GP making full use of all your advice and will see what happens! PALS will be my next stop.
@282523 I think you hit the nail on the head - I'm not expecting someone who knows it all or is a world renowned expert, but I would like a partner in my healthcare. Someone who listens, explains, is open with information/blood results, who is honest when they don't know but is willing to try to find out, who informs themselves of my circumstances by actually reading my medical history and remembers, when they ask me to email them, who I actually am and that they'd asked me to email them just a matter of days before.
That's the dream I'm hoping to realise eventually.
I don't expect medical professionals want us to feel this way - they want their patients to get better - and the additional stress of a poor relationship with a patient is not conducive to that. It's not lost on me that perhaps a bit of training in how to communicate with patients could likely improve so many of our experiences as well as our overall health, as a good relationship with your medical practitioner is key in so many ways.
PS Yes I did! I put my patient ID and full name - he had asked me to - so he had everything he needed. I try to view the email situation with humour - because you can't make it up Once he figured out who I was, he simply replied "Creatinine has normalised - it is now 71".
While I'm happy my kidney appears to be functioning once more his response doesn't give me any insight into my situation. Will it continue to function? Is this an early sign of something I should be concerned about? Is there anything I should or shouldn't be doing? etc. But hey it has normalised I guess so that's that and time for celebration. The rest I'll leave for a new rheumy.
We published a blog article on how to get the most out of your medical appointments which has a section on how to change your consultant which you may find helpful to read at lupusuk.org.uk/getting-the-...
Thanks Chanpreet_Walia Grateful for the section on how to change consultant! Just wondering if Lupus UK have any plans to tackle what appears to be a widespread issue of poor patient experience in the future at all? I know the excellent research papers were published, but there does seem to be a deeper problem as relates to the training that rheumatologists in particular, but also wider medical practitioners, have when it comes to communicating/managing the care of diagnosed lupus/sjogren patients who just need their care to be managed and monitored in an understanding and holistic way rather than the bit part sticky plaster service that a lot of us appear to be struggling through without anyone really taking ownership of our care and stewarding it through.
It would be really great if there might be a possibility to interface with the British Society for Rheumatology in the future, with maybe patient stories being put to them/patients actually meeting with them and explaining the struggles a lot of us go through.
Maybe that's happening already? I'm not sure - but figured I'd raise it as it seems this could be an easy fix.
I know other countries are dealing with this in a better way than we are right now, so there's no reason this couldn't be fixed or improved. In the US med students actually have lectures where patients volunteer to come and speak to them about their experience in the service that they specialise in and the things they think are done well and the areas where there is room for improvement etc. Maybe the UK does this already? Not sure.
I understand now isn't the time because of covid, but perhaps an idea for the future if it isn't already being done?
Yes, we are trying our best to help tackle poor patient experiences in a number of ways. One is by working with RAIRDA. RAIRDA now has a representative attending weekly COVID meetings which involve policymakers and is an excellent opportunity for our patient organisations to provide updates about problems many lupus patients are experiencing and how they can improved. If there are significant problems in specific areas we may be able to help get them addressed.
We really appreciate feedback from patients as this helps us understand the type of education that needs to be provided or perhaps improved. One of our aims is to educate the public and medical profession of lupus and it's symptoms thus, improving healthcare service.
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xxx
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