So I had my long awaited phonecall with rheumatology and advised I would like to start Hydroxychloroquine again alongside the Sulfasalazine. I am currently on a 3 wk course of steroids to help combat a flare up I have been in since March. Consultant agreed that if I up my Sulfasalazine and commence Hydroxychloroquine, this should help.to.overcome.my flare. All good of course, but when I asked when I could start Hydroxychloroquine he advised it would take at least a couple.of weeks to write to my GP and get it all set up etc. I questioned it, but he said that in the mean time, I had the steroids to tide me over....well.thats all.well.and good but im tapering them down now as we speak and it takes weeks for Hydroxychloroquine to build up...I have felt awful.for months now and I just feel like the Rheumatology team take the mic abit really....why can't they email the GP and make the contact IMMEDIATELY! Am I being out of order here? I work.for.childrens.services amd this is how we.do things, there are confidential ways to pass over sensitive information!
Also? During one phonecall to the Rheumatology helpline (there have been many, I have been really struggling) I was postively scolded by the nurse for daring to ask to be prescribed Hydroxychloroquine. 'This is an advice line! I can't simply do a medication review in a 5 min phonecall on rhe advice line!" Is what I was told .....so I had to wait another few weeks to be given a 5 minute phonecall where they reviewed my medication! I am very annoyed...they seriously do not understand what it feels like to be in a rheumo flare!
Sorry, just needed to vent 😪
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Haylonico
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Sorry that you are having so many problems. I find it so frustrating when medication needs changing with regards to how long it takes. I understand that there are protocols to follow but they could be more supportive during the process. Could rheumatology not send you a prescription in the post which would then give the secretary time to type the letter to GP or leave you a prescription to collect? Good luck xxx
It is frustrating. I feel in the UK we are under immense public pressure to 'praise the NHS' and while we all meet that one 'wonderful nurse' from time to time...as an institution I believe that it is generally failing.
I've had to fight for good treatment for myself and other elderly friends and family, including one with a known aortic aneurysm condition and emergency abdominal pains being ignored... If I hadn't been bolshy they wouldn't have been seen and may not be here...and that isn't right! I have numerous examples for myself and others.
Keep insisting you get dealt with, that's my view anyway and apologies for the rant but this comment is based on my experiences over the past two years. All the best. 💐
Praise can only be given when earned, the nhs for many is and has been failing and in my view it’s hit and miss and not what the institution should be. I also have little positivity for nhs on whole but have seen a couple of would say good docs but even they are tied by beaurocracy . I feel no more pressure to praise the nhs unless from experience which is yet to come. Only the lucky minority can praise them , we all can not as we all have our own experiences, I have your experiences personal and family/friends, we have every right to mention the less than desirable experiences as those whose experience is positive, no the failings are not right best wishes 🙏
Vent as much as you like.The advice lines are useful,but they have their limitations.
When I ring I find that they are very aware of what they are allowed to do,but they are useful in that in goes on your record and the consultant usually gets an email,so they may have some idea of what’s happening with me.
They don’t seem to have any concept of how alone I feel when I can’t get advice.
You are right. There are many ways they could speed up the process. Email, phone call to GP for instance. I don't understand the reluctance. If they could feel the pain they would have an incentive. I've been in your position a few times and it's not pleasant. Best wishes x
So lucky these days if you get a good rheumatology team which is responsive and quick to act and are helpful and all the things we need them to be……
Not the case for so many and the problem is the staffing (a biggie) the inability of the NHS to treat holistically the people with multiple problems, particularly those with RA, the disconnect between primary and secondary care and the endless time it takes for them to correspond with each other when they do, the overloaded bureaucracy and oh, I could go on!
The NHS when it works is without doubt a fantastic resource but it’s cracking and creaking -like many of us these days- and is still held up as an organisation which cannot be criticised even when so many poor souls are in agony waiting for procedures to improve their lives. We leave people hanging on at our peril whilst we’re not shouting ‘foul’ and making politicians and health governing bodies make the improvements needed. There are many countries now who outstrip the NHS by miles and we need to look at their best practice in order to improve our own. We can’t blame the workers, they’re doing their best with a system which is not geared up for patients but purely for the organisation. I have worked as a senior sister and then public health specialist for over 40 years in the NHS and am very sad to see it crumbling due to underinvestment, lack of good planning and an undervalued workforce. So, like I say, don’t blame the workforce but until we pay more and shout more it’s likely nothing will change!
The NHS has been starved of funding for staff and medication for years. Most of them are doing their best in the confines of what they are permitted to do. If you are unhappy with the call can you try calling again and explaining your concerns. I don't think the nurses can issue or request your GP to issue a prescription. They can contact your consultant with your request. The consultant can prescribe or you can ask your GP to prescribe. I know it is hard waiting especially when you are in pain and sadly most medication takes a while to take effect. Good luck x
I hear you I’ve had constant infections too and have only managed a month in two years of a ‘new for me ‘ JAK inhibitor tofacitanib. I have to say I don’t know why but my pain has become excruciating whilst being on tofacitanib so much so I’m going to have to come off it as it’s unbearable and I’m no wimp. I spoke with my consultant team last week and asked if I could try mtx again (liver said no last time) but it was the best medication I’ve ever had. The upshot of the appointment was yeah try mtx again but we want to book a hand scan for you first, and I have no idea how many weeks I will have to wait for that and once again unmedicated 😬 then I will have to wait again for mtx injections so pain and inflammation will be my life again for some time yet.
It usually takes a fortnight from seeing a rheumatologist to getting my copy of the letter which has been sent to my GP. Both sent at the same time .
Last time at my f2f the rheumatologist said he would ask my GP to organise some physiotherapy for me . After about a fortnight I had a phone call from him regarding an X-ray that had taken place at that meeting. Apparently, there was evidence of 3 healing pelvic fractures . I hadn’t received any copy letter of the initial meeting .
During the telephone conversation he asked if I’d started the physiotherapy that he’d suggested . I had to tell him that as I hadn’t received a copy of his letter I assumed the GP hadn’t either . There was a bit of an embarrassed silence.
My copy of his letter concerning his phone call , re the X-ray , appeared within about 4 days . So it can be done .
I’ve not had any contact from my GP about physiotherapy so I went down to the surgery to ask if anything had been actioned ( 4 weeks have now passed since the letter requesting physio ) . It hadn’t so the receptionist said she would send a reminder to the GP .
For the past few months we’ve had texts asking for only urgent requests for appointments , due to staff sickness/shortage . I guess covid is still the problem . Both GP and rheumatology have been fine/responsive in the past .
Ah I'm sorry it has been so difficult for you. I woukdnt mind so much if it wasn't for the Nurse practitioner's attitude towards me.
You know when you feel so vulnerable, because you're in pain and you feel bruised and battered and on top of that, someone who is supposed to be helping you talks to you in scolding manner- well she just made me feel so much worse. I was on the school run at the time and asked her if she could call me back (I'd been waiting all day for the call back), she told me she was finishing at 3.30 (it was 3.15), she really wasn't doing me any favours and I was in tears walking up to the school gate.
Obviously the wait is awful for you but at least they were trying- I do hope you get what you need amd some.relief soon..x
I get what you saying , after seeing consultant 2 month ago discussed second biological I have heard nothing since, I’m on 10 mg of steroid which can wait to stop due to Osteoarthritis in back , also on pain killers now RA very active, if they only new what the pain is like might feel different, hope they are not putting it down to Covid as that’s all I hear. I’m a patience person but getting to me now .👍
The Nurse practitioner did feel she had to mention to me that we had just been through a global pandemic and there were plenty of other people waiting - just to put me in my place a little further- as if I needed telling! They do not understand the feeling do they...I do hope you get your meds soon too. Fingers crossed for us both..x
I get sick of hearing about pandemic , everything blamed on this , I would say it’s not what you say , it’s how you say it . I admire the nurses ,carers , health professionals as I myself was in a nursing profession, yes there can be difficult times caring for patients, however some of them just need reassurance. I hope we will all got through these difficult times and there will be light at the end of the tunnel.🌈
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