Hi lovely Lupies. Just a quick question to people in the UK regarding how you make contact with your Rheumy?
I have never tried to contact my Rheumy here in `wales previously but at my last two appointments he said if you are struggling with flares contact me.
Well since coming out if hospital I am having an horrendous time, oral and severe genital ulceration, headache, swollen glands and the worst thing is I am finding just walking from the chair to the loo difficult. My tendons appear to be either rigid so that I cannot bend or straighten my leg fully or rotate my ankles and the pain is so bad.My muscles appear to be quite weak in general especially my bladder which is emptying as soon as I stand.
Today I rang the clinic and left a voicemail. A secretary rang me and told me that I cannot contact the Rheumy direct but need to go through the Helpline Nurse. I tried to argue that he said specifically “ ring me” but she was adamant that I could not. So I called the Helpline and the message said I would be contacted between 7-10 days 😫.
Next I called the GP Surgery. No appointments for 2 weeks and no I could not leave a message to ask the GP to email my Rheumy.
I then rang the Continence Service to ask if I could be reassessed. I have been on the waiting list for Urology again for six months. Advised I will be contacted within three months.
I know we have a very overstretched NHS but I just need advice 🤔Here in Wales we have no access to our records online yet.
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CecilyParsley
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I'm so sorry that you are going through this , Cecily.I email my new rheumatologist, and with the old one, I emailed his secretary.
You have so many awful symptoms that I wonder if you shouldn't go back to the hospital directly, via A &E.
Can you email your rheumatologist directly? Check in the NHS website at the hospital he works at- often there is a direct email address alongside their CV/blurb.
.If you get his email address, explain in the email that you send how you tried to do what he said, i.e. phone directly, but that you were blocked by the secretary.
I would also see if you can find out who the trust manager for the rheumatology department is (via website or ask to be put through by main switchboard) and tell them that the secretary has blocked you from doing what your consultant has expressly asked you to do.
I'm sorry I can't be more helpful, but I do think that the consultant should be made aware that patients who are requested by him to call him directly are being prevented from doing so. Otherwise he will simply be no wiser and assume you have not called because you are ok.
Thank you so much. I have never been given contact details always told go through to the secretaries . I think in the 15 years that I have been under a Rheumy I have only made contact once before and got a similar run around..GP doesn’t do eyes 😡, secretary said ring the helpline, helpline nurse said go to A&E. I eventually went to Specsavers who sent me to the Macular Unit as the increased Hydroxychloroquine had caused odema on the macular. There doesn’t seem to be ready access.
I am not seriously unwell just in pain and miserable but I will present to the emergency GP tomorrow and just wait as I know they can access the Rheumy email. I will look again at the site but I didn’t spot an email address for him. Fingers crossed I get some help tomorrow xxx
I contact mine through secretary usually there is a direct number on the letters but maybe consider trying PALS telling them the secretary is preventing you from doing so. Have you tried 111? Xx
We don’t have PALS here either here in Wales , only for HIV as I understand it. There is LAIS in Cardiff but I have never used them. I just want some advice as I really am struggling to walk. I have rested, taken more pain meds but it hasn’t worked, now these lumps in my neck are really sore. On their own I wouldn’t bother but sitting, standing walking and lying all being painful I am miserable. The sad thing is that I have got the best Rheumatologist I have had in 15 years. He is approachable, considerate and actually has offered me the option of calling him so I would hate to maje a complaint that might reflect on him. It wasn’t his secretary either. She is off on Annual Leave for two weeks. I will see the GP tomorrow and hopefully when he gets an email from them he will respond.
I haven’t tried 111 because every time I have they have told me to go to A&E and after the last 12 1/2 hour wait I would rather suffer at home xxx
Hi, Cecily.I'm so sorry to hear that you are going through all this. We've spoken before but I've not been on for quite some time.
I'm under the same Health Board as you, and I have found it helps to email your Rheumatologist's secretary, setting out everything that is happening, and adding photos if you can. When I've done this, one of the nurse's has phoned and booked a phone consultation for me. Find your most recent letter and the email address should be on there. Good luck. Xx
Hi Pippin. Are you under ABHB too? I have never noticed an email on my letters I will have to dig them out and look.
The problem is my Rheumy secretary is away on Annual Leave for two weeks and the woman I spoke with today was having none of passing on a message and said if I couldn’t nit wait a few weeks for a nurse to help me then I should go to A&E so I will get nowhere with her covering.
Once I do speak to him I will let him know that I have been blocked l I know their time is precious but he knows only too well I never bother him.
I'm not too bad, thanks. I have my good and bad days, and I came down with a very nasty dose of pneumonia in both lungs a year ago. It set me back for 3/4 months and I had to come off my DMARDS, but I'm OK now. Yes, I live in Tredegar too, so ABHB. I've just dug out one of my appointment letters for TRG hospital, and you're right, there are no email addresses! I must have got myself confused with the private consultant I've seen before in Bath! So sorry about that.
I am so sorry to hear that. I have had pneumonia but thankfully not for a long time. It does wipe you out.I am pleased that you are ok now.
Thank you for checking I could not remember ever seeing the email address. I think here they protect the Consultants and I understand why but it just makes things so difficult. My Rheumy has been wanting me to try Azathioprine for a long time and I have resisted. When I saw him in January he said I think it was time to try you on it until I read your notes ie about the mass up my nose and impending surgery. His view was there was no point in starting it as I could not take it prior to surgery. Currently I am on Hydroxychloroquine and Colchicine.
We have an amazing new Health Centre but too few GP`s to run it efficiently. I had amazing care under ENT, and respiratory services but sadly Rheumatology seems under resourced. I now see my Consuktant at Chepstow Community Hospital. What a difference it makes. Spotlessly clean, relaxed atmosphere, fabulous nursing staff. I cannot fault it. Xxx
Hi Cecily, you must be feeling quite fed up, if its not one thing its another and not getting help when you need it sucks!
i phoned the secretary and told him exactly why i wanted to contact the rheumatologist and he told me to send an email to himself who would then pass it on to the rheumy. He gave me a direct email address so that it went direct to him, which is now in my accounts. This was years ago and ive never had any problem doing it this way. if i havent spoken/emailed for a while i ring the main hospital switchboard and ask if its still the same secretary there.
Having said how its worked in the past, we now have a lupus nurse who phoned me when it was my appointment, i dont know if i was too complicated for her as she ended saying shed make sure my next appointment was with the rheumatologist, she did go onto say if i had any concerns i could always contact her and when i received her letter, there was a little card attached with her details.ive yet to find out if this way is efficient.
i hope this morning you manage to get some help. i find it amazing that we are an island and each section is so different in the way the nhs works! x
Thank you Chris. Well today I saw a GP who said this is outside of my expertise and you should not have left it so long to contact the helpline so what do you want me to do? I asked for steroids to damp things down and he refused on the basis that he would not kniw what dose to give me??? After asking is this curling and tightening of my tendons AI as I haven’t had it before? He said you are asking the wrong person 🤯
The upshot was he said take more pain relief and wait until the Rheumatology nurse gets back to you.
I think it varies from GP to GP how much help they give you because the last GP I saw said I don’t know the best advice re my post op nose but I will call ENT and ask advice for you. Two hours later she called me and passed on the advice. The GP today would not even agree to email my Rheumy just to write to him so so I will have spoken to the Rheumatology nurse by the time that gets there.
so frustrating, why is nothing every straight forward anymore? i had it once when the GP didnt know what to give me and had to call the rheumatologist, not sure if its ‘treading on each others toes’. last 2 times ive been for an unexplained lingering chesty cough ( now under investigation) ive just gone in to gp and said antibiotics and a weeks worth steroids please 😂 sorry state of affairs when you have to tell doctor what to do
i hope you get some relief soon, you've had enough to put up with recently. You too have a lovely Easter xx
Hi, my Rheumy always says call me if there anything is getting worse. Her secretary usually helps a lot. I’ve only called her once and it seemed to work out pretty well. She actually did call me back after a few days. My haematologist is the same, she always says call me if there is anything worrying you which does give me confidence. Again only once have I done it and her secretary emails her and has got back to me within a few days. I would go to A & E. your system not working and you sound like you are in a lot of pain. Best wishes,I hope someone sees you very soon. X
Our Junior Doctors are on strike currently so the hospital is saying only attend A&E if you are seriously ill or injured. Last time I was there the wait was 12 1/2 hours so I am just going to have to swallow more pills and wait it out.
Re my bladder. It is always worse when I get the genital ulcers. I seem to have no control at all. It would be excruciating to try and do any sort of pelvic floor exercises now so I will have to wait until the swelling has gone down. I have had a pelvic physio, bought myself a Kegel which I could not use, tried medication. Nothing has helped. My Urologist suggested a pelvic portal and I chose not to have it.
So sorry Cecily, I am under rheumatologist at addenbrookes in Cambridgeshire and we contact through the specialist nurse and I've never had to wait a day or two. She consults the relevant people and comes straight back with an answer, an appointment or whatever. I hope you don't have to wait long for the nurse to respond. These systems are great when they work!
Thank you Heatheric. Wonderful when they work I guess. Yours sounds like an amazing service, sadly here in Wales we seem to not have the networks in place. When I see my Rheumy I will let him know the issues I have had.
I'm so sorry you're having such an awful flare up and can't do as your rheumatologist suggested/ requested. In my case I now have a direct email to mine because she prescribes me something off licence directly and we have built up a very good working relationship this way, same with my dermatologist.
But I know from being under other specialists such as gastro and neurology and also when my rheumatologist's been away, that I really struggle to get past the brick wall of reception. The rheumatology nurse helpline do get back to me within a few days - sometimes sooner - but I'm too complex a patient so they usually have to go and ask the duty rheumatologist who just tells them it will have towait or isn't anything they can help with - see GP or go to A&E. I think with rare diseases such as Behcets and systemic sclerosis it's extra hard as rheumatology nurses aren't trained in these as we are so few in number.
To me it really sounds like you need something stronger now such as Azathioprine or Mycophenolate - either of which would be a good idea to get better control of your active disease. I know that being on a stronger immunesuppressant medication means that we are seen more regularly and less likely to be fobbed off by jobsworths than if only on Hydroxichloraquine because of the increased risks. Hopefuly your rheumatologist will give you their nhs email once you explain the problem you've had doing as they suggested.
Meanwhile it sounds like you need an IM steroid injection asap to tide you over as Azathioprine and others don't tend to work quickly. Take care and hugs xxxx
You are spot on as usual. I saw a GP today who showed absolutely no care whatsoever. He said he was not trained to help me and to not leave it so long before contacting the Helpline next time. He refused to give me a steroid injection or a course of steroids because he would need the Rheumy to tell him the dose 🤯.
I know now that I will just have to suck it up, rest and swallow pills until things ease up.
Thanks for the hugs, very much appreciated. Have a fabulous Easter xxx
It is ridiculous the situation you are in, and I can only suspect there are other rheumatology patients at the hospital who similarly can't get through.
Rheumatology Nurse Teams, if a department has them, seem to vary in how they can be contacted and what they will do.
Possibly the secretaries work as a team, and maybe there is lead secretary you could ask to be put through to, stressing the severity of the situation which I think might warrant going to Compliants (PALS exist here but when I emailed them, they forwarded the email to Compliants..)
One Christmas I had to use the Hospital Switchboard, where GPs can ask for 'Rheumatologist on call'. Although I was not supposed to, I did get to speak to a specialist. Your GP surgery though should be making the call. It might be worth phoning your GP again, saying you need an emergency appointment as you are unable to move etc
Swichboard might be able to provide an email address so you have more than the just the nurse team's phone number.
If you use 111 you could also ask to speak to an ED doctor. I managed to once, and they helped more. Some people call 999 for much less.
Given timescales I guess it could in part, be a response to the trauma of your operation. So following up through that team might be the easiest. They might be able to contact rheumatology using 'Switchboard and then Rheumatology on call'
When you do get to speak to your own rheumatologist, maybe give them a copy of what you shared here.
Hoping things change today and you get the help you need.🤞🙏🕊xx
Hi SC I have seen a GP today who refused to email the Rheumy ( you cannot jump the queue), refused to give me a steroid injection or a course of steroids to damp things down ( he would need a Rheumy to tell him the dose). His advice was to up my pain medication and wait until the nurse contacts me and next time don’t wait so long to ask for help. Honestly I knew from the moment I sat down that he had no intention of examining me even, I told him about my sore eyes, lumps in my neck, lack of bladder control, tight severely painful tendons , said I was sleep deprived and asked could any of these be something other than a flare? He said no good asking me that I am not a specialist.
I am resigned to the fact that I have to wait this time, take more pain relief and rest but when I see my Rheumy I will advise him of the situation and ask what happens next time. He is already not impressed with my surgery. They have refused to supply my three in one mouthwash (soluble prenisalone, antibiotic and Nystan). Twice now he has supplied neva years worth .
My GP does bloods, urine tests and measures BP. They will offer treatment if they think I might have infection but anything flare related they say contact rheumy.
Even when had NHS referral they would not help after referred. Unfortunately over whole spring to autumn and my two rheumatology appointments, nurses would not help either as no diagnosis was made and I was discharged. So had second opinion and helped straight away.
I had OCT two months back by Ocular Oncology to check retinal lesion not malignant and still not heard back. I can't be bothered to chase it.
Doctors review scans remotely, and only nurses and OCT photographers in the clinic.
I am so sorry that you have had such a bad time of it. I can honestly say I do not understand why some departments run smoothly and others do not. The only thing I can think of is that it is entirely dependant on the Consultant and their tenacity, integrity and compassion. After 13 years of awful Rheumatology care I finally have a Rheumy that I like and admire. He is approachable and he listens. When I mention an issue I get referred to check my eyes, to check my voice box l The nurses adore him and say he is so different from “the others”.
My ENT Consultant is truly amazing. She put herself out for me and did my surgery under a local anaesthetic, then she put me on the Critical Care ward, she liaised with my Rheumy and an arterial specialist before my surgery and rang me the minute she got my results as we both feared it was post nasal cancer and she did not want me to have to wait another week until my check up. I was pathetically grateful because that is not what we have come to expect. I bought her a card and a bouquet just to say thank you and she was tearful and gave ne the biggest hug. She said she rarely gets a thank you just complaints and anger over things she has no control.
Please do chase up your OCT scan I am having one Friday and at least the optician will look at my sore weeping eyes that are not responding to over the counter conjunctivitis drops. Let us kniw the outcome please. Wishing you the very best of luck xxx
Learnt from photographer that I should also have HCQ ones done separately now (they have been done together. Guess it is now more process / team driven)
It is about finding specialists who care and who are good. There are some outstanding doctors. Maybe things get easier as their careers progress. Hoping that this becomes the norm.
It will be interesting to hear what your rheumy thinks about what has happened. Hope things improve quickly. xx
hi Cecily. I’m in Wales too and it’s been impossible for me. I had severe reaction to lupus meds and GP couldn’t deal with me as I am under Rheumatologist. I had to leave an answer machine message where it was stated someone would get back within 48 hours.
48 hrs later no response so GP spoke with them direct as I had a whole body rash that was now so bad my eye lids were swollen. The rash was awful and continued to get worse
Long story but it took 7 days for a response from a rheumy nurse despite being classed as an emergency by GP
Being diagnosed has been awful as GP now hesitant to deal.
Rheumatologist who gave me diagnosis after looking at my medical history and showing me my elevated levels of something in my blood, offered me steroids and put me on hydrochoroquine (excuse spelling) and gave me loads of booklets to read has now told me that my blood tests reveal I dont have it.
Years of mouth ulcers, genital ulcers, swelling and pains in joints and Im back to square one.
Oh Tessaliz I am so very sorry. Sadly your experience re diagnosis then being undiagnosed again is very similar to mine. I was diagnosed with Lupus in 2009, then it was changed to Bechets, then back to Lupus, then UCTD and Fibromyalgia, then Lupus and Bechets, then Fibro and “hysteria”, then no Fibro but UCTD and finally I got lucky and had my current Rheumy who says my primary condition is Bechets but he is nit ruling out Lupus.
If you have genital ulcers, have you had biopsies?Has your Rheunatologist considered Bechets?
Which part of Wales are you in?
I really hope you get the help you need. I know what a demoralising and incredibly painful time you are having.
Sorry to read that you are going through such a tough time recently!
I recommend seeking medical attention or advice through the hospital or 111. Also, seeking advice and support from PALS may be a good option at this point.
I have attached below a blog article that has information about what to do following a bad experience with a doctor or medical professional.
Please also feel free to contact national office for advice or a chat on 01708 731251, Monday to Friday 9am until 5pm, or contact me directly at michaella@lupusuk.org.uk.
Hi Michaella thank you for responding. I saw a GP yesterday who would not examine me, told me I would know next time to call the Helpline sooner, refused to give he steroids to damp down my system but offered Morphine, Oramorph pain patches despite knowing that I am already on MST. Paracetamol, Garbapentin and Tramacet. It beggars belief. My Rheumatologist will be so angry when he knows if that I am certain but currently here in Wales the Junior Doctors are on strike, our one A& E open in my area is overwhelmed with critical injuries or illness seen only so the system is struggling. I understand that and all I wanted was just a chat to get some advice. I will just have to rest, increase my pain meds and wait really. My post was a rant of frustration and I needed info on how other areas responded to requests for help to back up my stance that this just isn’t good enough.
In 15 years I have only ever rang the Helpline once before and got a response the next day.
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Pain that is not inflammatory, how did you deal with it? What did your dr recommend? 
How many of you attend support groups for lupus? Are they run by your hospitals or a branch of Lupus UK? 
