This question does not deflect from the amazing and incredible work of the NHS during the mass pandemic of Covid. I'm just inquisitive on how others have been coping and if you yourselves have been provided with continuous care. Over the last 4 months, my personal journey with coping with RA has been extremely difficult and the lack of intervention from my RA team has been rather negligent!
Since September last year my RA has been very unkind to me, I have been experiencing a lot of joint pain especially in my hands and feet. The pain in my hands has been so debilitating to the point it hurts just picking up a mug! Its been a rather emotional and physical rollercoaster to say the least. Ive been advised not to take oral steroids as this will weaken my immune system further. During the last 3 months I have rang and spoken to my Rheumy nurses whereupon promises of forwarding my messages to my consultant has been promised but to no avail! I have been promised 4 times a telephone conversation with my consultant but again to no avail. Each time I've been told the missed call has been been a consequence of Covid. Whilst I totally understand that with Covid, consultants are being redeployed I think it s sad that there must be so many people suffering from underlying health conditions are also being over looked.
My doctor rang me up regarding another a seperate problem, so I conveyed my present problem, I was surprised to hear his distain over how I have been treated and has insisted he takes over and writes personally to my consultant. I have now been promised a call on the 28th Jan!!
On a seperate note regarding medication, I am currently on Humiri only as I'm not able to retake Dmards. It is my 3rd different biologic and I'm just preying after 2 years that I will find a drug that suits me. Has anybody else failed on more than 3 biologics but found the right one? I'm worried about being put on Jak I inhibitors! Has anybody experienced good results from these? Any advice gladly received!!
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Jaxine
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No mine has gone ahead apart from an episode with a bad tempered nurse delaying my infusion due to christmas.Care has been fine but I've found staff empathy has gone downhill in my hospital but ive had all treatments and replies immediately to questions.
Allanah l totally emphasised and relate to your experience. I have given up ever progressing by contacting my GP surgery. Only ever being able to get a brief telephone conversation l have no consistency of care and passed from one GP to another. I developed a condition in my entire ribcage and back since March 2020. I feel totally abandoned. I wonder has the role of the GP actually changed? Do they no longer diagnose or refer? It appears they now just a prescribing phone-line and don't even follow up having done so.
Fortunately for me my doctor was extremely empowering and sympathetic relating to my treatment for RA. I just wish I had spoken to him earlier. Sorry to hear about your problems and I totally understand you feeling abandoned.
Hi Jaxine.. here goes..
First lockdown really bad care all senior staff redeployed answer service and trainee nurses would call back and just make notes . Still haven’t been able to speak to a rheumatologist. Senior nurses came back In July . I’m dealing with senior nurses now who are making decisions-on behalf of the rheumatologists they have changed my medication as I was having side effects and really should have stopped it 6 months earlier but there was no one who could make that decision.
Steroids ... many are being denied them. Personally flaring means we are vulnerable and suffering so why not have the steroid and be comfortable and vulnerable ?? This is what I said to them.
I failed on hydroxychloroquine/sulfasalazine and entanercept. I started baricitnib ( Jack inhibitors) in December so far so good . Fatigue gone/swelling gone/ stiffness gone. I posted only recently how well I’m doing on it. A few side effects but nothing I can’t cope with..
Well done your Gp . There many people out there suffering or dying because of lack of treatment. Covid isn’t the only life threatening illness..
Thank you J. It is up lifting to read your message, especially that you are doing so well on baracitinib. I've been reading too much info on these drugs, which I have to admit to has made me extremely anxious! All RA drugs comes with a plethora of warnings and potential side effects I need to regain a positive mindset.
Yes agreed, that s always been my mantra too however, what I'm concerned with if the new drug doesn't work, like so many before, the efficiency of it being dealt with takes so long! Need to have this conversation with my consultant if she rings!
I've got my consultant s secretary s phone number but I ve never felt easy going down that route ( she a rather angry stern secretary scares the life out of me)! But I think I'm going to be a bitter harder from here on! X
Go girl.. when they are being off I often ask if this was you would you suffer in silence? Often stops them in their tracks .
For my part though going through hell to find a drug that my body will allow me to take without dire side effects I am very lucky with my RA team. I emailed them over the past year with COVID and always had a response and only once have we had a blip. Even today after a rough day yesterday I emailed them at 8am and by 905 I had a reply to stop taking Benepali and they would get hold of consultants secretary to sort a phone call out. So unlike you I am lucky in that respect.Glad your GP has done a letter sometimes you need someone to fight your corner now and again x
Hi Deeb, great to hear you are being looked after. Must be my bad luck as I've certainly not experienced that quality of care. Maybe I should have complained a bit more, but with Covid i didnt feel it would be morally right.
I'm another lucky one as I've had several phone and f2f appointments. My nurse helpline excellent; they always follow through and get advice from the consultant if necessary and that has continued despite the current situation.
It's good to hear that your GP is being active on your behalf and hopefully you'll now get the help you need. I think that we all need to push for the treatment we need and deserve but I understand you feeling uneasy about it. However, getting the right medication now will hopefully prevent you needing more extreme interventions in the future so in reality, you're helping the NHS as well as yourself.
Well so far everyone seems to be well looked after which is great. I've certainly had a good response with call backs from the Rheumy nurses but it s stopped there, it seems it s been the negligence of my consultant to follow it up . After 2 years of still not being controlled it starts to feel miserable!
Hi Jaxine, the standard of care from my Rheumatology department is pretty poor at the best of times but it's definitely worse now. Our GP surgery have basically closed their doors. I really feel for those like yourself who are suffering and those whose operations/cancer treatments have been cancelled. I really hope you get the promised call and feel better soon.
I was due my annual rheumy appointment in September.
My hospital tends to make follow up appointments right after the appointment then for the rest of the year they send letters rearranging the dates.
The year before last I got a few different dates then eventually ended up at the first date I was given. I didn’t see anyone this September like I should have done.
I can’t decide now whether it was cancelled or if I lost track and didn’t turn up although as there were no face to face appointments being done at that time so I don’t think it’s that but I didn’t see anyone and there were no missed phone calls either.
I went to my optician as normal for my annual OCT scan - I do that then take the results to my endo to be scanned onto my records - anyway I did that expecting to get a date for an appointment or even a phone appointment - nothing.
In general though I don’t feel as if I have a GP but have felt like this for quite a while. Certainly before covid. It’s probably my own fault because I find phone consultations for anything new quite difficult, I’m ok with a follow up ‘how are you?’ But I’ve had phone calls with my GP where I’m sure there has been someone else in the room having a conversation with her at the same time she’s been talking to me, it’s not that she’s been typing.
It gradually happened that it was always difficult to get an appointment with my or indeed with any GP unless it was a dire emergency then you could see ‘somebody’. It’s probably easier now to get a telephone appointment with my named doctor now than it was to get a face to face before lockdown but I can’t see the point.
Then at the beginning of January we all got a letter addressed ‘To the patients’ at our house number telling us that the partners had sold out to a large company and the new people had been given a year’s temporary licence to practice. It also said they don’t know if the present GPs will stay there.
Saying that following a telephone conversation with my local hospital last week I was told they would ‘write and ask my GP to do blood tests’ and I though ‘you’ll be lucky’. Then a couple of days later I got a call from our surgery to say I needed blood tests and was given a phlebotomist appointment that same afternoon. So it looks like the new people must be doing something right.
So really who knows what’s going on and I’m not sure I feel as if I’ve got a doctor, certainly not one who knows me and who I feel confident in. I feel abandoned really. On the whole I feel well enough although I’ve got a problem with my arm following an accident this time last year but with covid being rife in our area plus the fact that cancer patients and people who are really ill are having difficulty getting treated I don’t feel I want to push just because I’ve got a sore shoulder especially as I paid for private physio and I’ve now got things I can do to ease the pain. Roll on normality but I doubt if that will happen this year. ☹️
Well I'm glad your new practice doctors seem to be on the ball. Yes I've felt like you with so many other people with much more serious health problems, I didn't feel my problems in comparison were pertinent enough., having said that we've all been told that RA left uncontrolled can be serious in it s own right. Well looking forward to normality too and getting this RA sorted!
My GP surgery was very inaccessible during the first lockdown but things have improved in that you can actually go inside now rather than shout through the window.As for the hospital, the rheum nurse number has always been an answerphone and the nurse usually rings back within 48 hours or two. When I just needed more blood test forms and a prescription I left a message and they posted them - as I’d suggested -without calling back. Have had 2 phone consultations with 2 different consultants since pandemic started which were fine.
However I am having yearly ophthalmology appointments (due to hydroxychloroquine damage). Was due one on 20 Nov and the day before rang to check only to be told it had been cancelled in Aug and I should have received a letter. The letter eventually arrived last week, dated January and with new appointment for the summer!
Thankfully I haven’t had many RA problems lately 🤞 but it does seem to be more difficult to access help or decisions from a consultant atm.
Gosh that s awful you are experiencing damage due to drugs! I thought the whole idea of frequent blood tests was to pick up any derogative effects of the drugs. Thank goodness to no RA problems!
The eye problem was picked up by the optician at my yearly eye test. On hydroxychloroquine we are told to have an eye test every year as it can damage the eye (very rarely and after many years use). Despite the fact that I had only taken hydroxychloroquine for 2 years, the particular consultant I saw at the hospital eye clinic was convinced he could see damage and stopped the hydroxychloroquine at once. Since then in follow up appointments I have never seen him again and other eye doctors have not seen any damage apart from that normal for my age (60s).
I am left wondering if there was actually damage done and that it has repaired itself or whether it was never there!
I've had excellent treatment - rung by the surgery to arrange medication supplies, appointments for blood tests arranged with no problems, telephone consultations with consultants and GPs arranged, all the tests I normally have (and some others that they have thought up in between) arranged and completed. As far as I'm concerned things have gone ahead slightly better than usual due to everyone trying harder.
I ve been treated exactly the same since a year last October. Wasted months trying things that didnt work or side effects were so bad I had to come off them. I have to ring Advice line and they get back to you 2 or 3 days later. I was promised last Wednesday she'd get in touch with Specialist Nurse to have steroid injection as the two rituximab infusions I had in October/November haven't kicked in yet and hands and shoulders are really bad. I asked GP to email Specialist he said he wouldn't know what to say??? Dont know what else to do.I hope you get the right treatment soon.
Chezza sounds the same as me. At least my doctor said things have got to change! I would speak to a different doctor my doctor wrote a letter directly to my consultant saying that I need immediate attention. I hope you get seen to soon .
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