After my eventful time with sulfasalazine I have been waiting for some contact from my Rheumatologist for a new plan of action. Received a letter asking to make an appointment. THEY CANNOT SEE ME UNTIL MID FEBRUARY 🤯🤬I have been struggling since this February so it will be over 12 months since things went down hill. I rang his secretary who said there is nothing available as he is now only in one and a half days per week 🤬🤯🤯🤯🤬sent an email to head clinic nurse for advice.... where does this leave me???
Banging my head against a brick wall: After my eventful... - NRAS
Banging my head against a brick wall
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43 Replies
•
It seems from reading others posts it's all or nothing with rheumatology. Some seem to have good links, regular appointments or support they can access, yet others struggle to get appointments, are not listened to when they do get one and basically feel frustrated and are left without any clue as to what they should do. Maybe it's down to the area we live in, resources available, staffing levels etc but it feels like a bit of a lottery at times and I do know where you are coming from with the lengthy wait. Some will have positive, supportive and informed visits others will not. I just wished we had an answer to this disease and at least way forward in how to live with it or treat it more effectively. Take care J1707
That is shocking! The Rheumatology Dept here has an advice line, so I usually get some action by calling. The specialist nurse can speak to the consultant and contact GP too with a new plan of action, even if it is just steroid and/or painkillers.
The NHS is stretched but there is a complaint system; maybe you could call, follow up with your précis of what was said, by letter; mention that you appreciate the team and their efforts while the NHS is under pressure, and that you will have no choice but to complain if no satisfactory action is taken?
This is why I will never want Nationalized Health Care and allow politicians to take away my private insurance here in my Country...USA!
Other people already can have what they wanted soooooooo badly...Obamacare!
Everyone can have insurance!
Many can choose that plan and I will stick to MY plan!
It we go Nationalized, we will be in the same boat as you! No way!
Waiting that long for an appointment with a Dr you already have is simply UNACCEPTABLE!!
I can call any of my specialists and see them within a week or two.
I feel so sad you have to wait until FEBRUARY!
Unacceptable!!
Maybe you can slip in if someone cancels, but I highly doubt many people will cancel because it took them soooooooo long to be seen in the first place.
I was living in the USA when RA struck. In spite of the fact that we ought to have urgent referral and be seen ASAP, in order to get diagnosis and appropriate early aggressive treatment, I’d have been totally crippled by the time the first available was due ie 7 plus months after symptoms began!
No, the NHS is the best system in the world.
Politicians here simply have undermined it by cutting funding even though that funding is paid by our taxes and Nat Ins etc.
Having experienced health care systems in both sides of the Atlantic, I would never want the US system introduced here.
We have lost staff, trainees in many fields and this too undermines our wonderful NHS.
There is a shortage of specialists in parts of the US too. Rheumatology does not attract them. There’s little reward in knowing you cannot cure your patients and that you often can barely alleviate their suffering; no glamour in it, as someone else already remarked!
If the US Ins system had been good, I’d certainly have received relief in order to ensure the three flight (17-24 hours) journey back to the UK was bearable. I could barely move, excruciating agony. The edge was taken off by using post surgery drugs from 11 months earlier. No diagnosis in much of the USA means no pain relief and PCPs risk their license to practice if they do prescribe. No, NEVER do I want that wretched system here!
Rant over for now...!
RA drs in America do not hand out pain pills like candy anymore because of the opioid epidemic. Especially, if requested just for a flight! I am sure you know this.
A couple doses of prednisone would have easily alleviated your symptoms for your long flight!
I am sure if you made an appointment with your US RA doctor before you traveled, they would have given you some prednisone! Even a GP could have done that for you.
Buy the way, when you got to the UK, how long did it take for you to set up an appointment with a RA specialist? Months maybe a year?
As far as the politicians ruining your "perfect system", the only thing you can do is vote them out!
I know the opioid paranoia over there, ridiculous since it means people with severe RA cannot get any relief until diagnosis. PCPs are not permitted to prescribe it. There are no GPs there.
That was my point on drugs; of course it was not just for three flights. Those flights got me back to where I did then get Prednisolone and Tramadol, and urgent referral here. All very efficient, not left to suffer.
I had no diagnosis therefore no prednisone or any other appropriate drug. A couple of doses would not have easily alleviated the excruciating pain in most joints but after three days there would have been much less pain. Overnight there would have been a difference, given a high enough dose.
You have totally missed that I had no diagnosis, no first appointment with a Rheumatologist was possible for months.
My first Rheumatology appointment here was within three weeks. I arrived on Nov 3rd and got referral done within 3 days (and prescribed Prednisolone and Tramadol before specialist diagnosis which was confirmed late Dec 2015) then was seen at Rheumatology Nov 26th. I was impressed!
Re politics, the majority failed to vote them out! Except in Scotland, but that’s another story.
I am not putting the USA down but am sharing my experience. The paranoia over opioid prescribing is extreme. I had not known about the fear. Non prescribing of pain relief and corticosteroid until diagnosis (as that could be a very long time) is cruel, senseless, inhumane and unnecessary. It is very sad, and it shocked me and made my friends and in laws there ashamed of their country.
Totally AGREE about the pain meds being denied to RA sufferers! The pain is very real! I just don't get it!
It seems so unfair.
All we want is to live our lives pain free.
Waiting for a RA meds (DMARD or biologicals) to even work can take months and even years!
My story:
I have been waiting two years for them to find the correct RA drug, so what does my RA dr do...prescribe massive doses of prednisone!
OMG I have suffered terrible consequences from so much prednisone. My long hair broke off up to my ears, I had the moon face for months and months, I still look like I am 9 months pregnant, gained 25 lbs and look like a cow, I bruise at the slightest touch. Basically, I now have Cushingoid and have been trying so hard to reduce prednisone. But it is the only thing that he gives me for pain.
I could have just stayed normal if he gave me one pain pill a day instead of massive doses of prednisone for over a year!
So sick that they are afraid to prescribe a pain pill but will prescribe stuff that is even WORSE on the body!!
True... I was forced to go to ER (driven there by then hubby) and that was the only time I got Prednisone; 2x20mg daily for 8 days. And that was when I discovered PCP could/would not prescribe it. I could not understand that, thought they were being cruel! So I searched online and found out about the reasons.
Yes, a low ‘maintenance’ dose of steroid is 7.5-10mg daily. I have had six week tapers since June. Another 16-24 weeks to wait and see if infusions just begun will be effective. So, I’m not happy either with needing steroids but aim to keep as low as I can tolerate in terms of swelling pain levels increasing. Very tricky.
I have friends who developed Cushingoid, very undesirable. I have gained weight too but only about 7lbs. I hope something works for you soon, presumably it is not only pred you’re taking? 🙂
Since none of the biologicals have worked, I wanted to try Antibiotic treatment. All I can say is since I have been on antibiotic treatment, for the first time during this whole year of hell, I was able to reduce the prednisone from 20 per day to now 5mg per day. It is a freaking miracle.
I also take 800 Motrin every 8 hours! That's it.
Ibuprofen makes no difference for me, for RA.
Dr Brown’s method used tetracycline (not checked but I think that was the group) group of antibiotics. But patients also had have total rest and were wasted by the time allowed to begin movement and exercise again.
Monocycline arthritistrust.org/wp-conte...
• in reply toTroygirl
When our nhs works it is amazing. Unfortunately our government is slowly chipping away at it in the hope it will be privatised . If this becomes the case no insurance company would cover anyone already suffering with RD. The nation pays enough in taxes to cover the NHS but money has been diverted elsewhere or used wastefully. If this was a business I would sue because I don’t get what I pay for.
Probably looking for another rheumy, but this could take even longer than waiting for a Feb appointment. I sometimes wonder if we shouldn't all turn up at A & E to try and get someone to examine us. 
The health board must meet your clinical needs, you will find other language they use in their online blurb. I often quote the language back to them, always written down. So maybe you feel your clinical needs are not being met and therefore the health board should know about this in a letter or email ?
PALS might also help you.
But if the rheumy is fully booked...unless there is a cancellation a complaint can only result in disappointment & excuses.
It is an administrative not a clinical matter.
As you say, a visit to the PALS office often helps.
Maybe pointing out that the Rheumatology department is understaffed & therefore unfit for purpose .....so what are they going to do about it might produce a more helpful response?
The sad fact is too many complaints often mean a Consultant ether retires or leaves the NHS. They are the ones who face the patients, and have to put up with our complaints when it really is not their fault, they can only stretch their time so far & treat a finite number of patients. I know quite a few Consultants (in all fields of medicine) nearing retirement in the next few years,& I’m sure if things don’t improve they will just go early.
Maybe all the recently promised funding to the NHS wll now materialise, but if a hospital can’t persuade Rheumatologists to join their team somebody is going to have to get their thinking cap on.
Of course...bad treatment or neglect does warrant a complaint......& a letter to the relavent department should be taken notice of.
There are always appointments, waiting a year is unacceptable. If you accept poor care, that's what you get. Damaged joints are not acceptable and clearly clinical needs are not being met.
It's up to others in positions of power and influence to argue the case for for more nurses/Drs
As a patient using a service I have paid for, expect it to meet my needs. I wont sit at home, joints deteriorating, saying they are busy.
In an ideal world we could all see our rheumy regularly, & get a GP appointment in a week. Unfortunately right now ....a six months wait to see a rheumatologist and a four week wait for a GP appointment appears to be the norm in this area.
If the aren’t enough Rheumatologists available, then a rheumy nurse really is the next best option.
My rheumatologist started evening appointments up until 8.30pm....but he has stopped...because patient’s said it was too late....& didn’t even have the courtesy to cancel if they weren’t going to attend.
It’s not always the patients who are let down.
I will always pursue the best care I can get AC
As do I Mmrr.......but as you know there are ways & then there are ways of putting your case
My meaning is it helps if you understand what both patient & doctor are up against.
Yes, but poor care isn't always due to to the pressures on the NHS it is, in my experience, poor Drs/rheumatologists too.
Writing things down in black and white has always improved the care offered to me, no denying what's been said, it's honest, cheap and very straightforward.
Health and good joints is number one 😀
I currently see my RA Dr every month. But, then again I am in the US.
I feel so bad for you guys that it takes months and months to have proper blood testing, be monitored and receive treatment for RA.
In the world of RA, so must damage can happen to the joints in 2-3 months let alone 6 months!
Why they make people wait so long is mind boggling when they know time is a crucial factor with RA patients.
Unfortunately ....in England waiting lists are so long because we don’t have enough Rheumatologists or Rheumatology nurses....to see people with RA symptoms & sadly more & more people seem to be developing Auto Immune diseases including RA.
Hopefully things will improve...but it takes minimum 10 years to become a fully qualified Consultant Rheumatologist...so Medical Students starting today will not start specialising until 2026......then they still have to study to become a Consultant, then they have to find a hospital with the budget to employ them.
Hopefully when our new Government gets going things will improve.
Yes!
Congratulation on Boris Johnson's Landslide Victory!
Hopefully, now things will improve for all citizens of the UK!
I think he will ferret out corruption! Hey, I heard he may get rid of punishing people for not paying for that TV license you guys are forced to pay!
Curious, how much are you forced to pay?
Yes that punishment for non payment of the TV licence is ridiculous...people have been fined more for that misdemeanour than committing a crime...& if you don’t pay...some have been jailed!
The Licence fee is £154 pa....but if you want to watch Sky or CNN or any other cable Channel you have pay another fee to them. I don’t know how much that is....I just get the “free” channels!
We do get a lot of Channels on Freeview included in the BBC licence, fee, so if it is abolished ...in fact we might end up paying more!
There’s merit in what you say. I’d not recommend complaining about the Rheumatology staff. The complaint I made in the past was about the appointments system set up to ensure you never got seen within the consultants’ time frame for return; it was the ‘ticketing’ approach ie sending out a letter telling people their appointment’is now due’ and call this number to get an appointment. That date would never be immediate but a month or so away.
I pointed out that consultants’ instructions are there for excellent reasons, ones that might mean a person is suffering or even in danger of death (depending on the health problem) if not seen at the time specified.
I have not yet found a doctor guilty of malpractice, a very different matter indeed.
I think that is one field that should be looked at....the calibre of the admin staff.
I have a non rheumy appointment after Christmas at a hospital I haven’t visited before. The appointment letter says Area C Building Y.....so I called to ask where this area is in relation to the main entrance of the hospital. I called the department three times & got an answer phone, then I called the main switchboard......& after a lot of”do you know where this is “ amongst themselves..I was eventually put through to a very pleasant lady.....who ran the supply room for the operating theatres!! No she didn’t know either!
Back to switchboard & I was virtually told I will just have to “turn up early to look for the location”.
As the general map of the hospital shows three car parks....I will find out before hand if it kills me!
I have sent an email to the address in the appointment letter...so I await with interest to hear if they know where they are!
• in reply toAgedCrone
I’m loath to complain too much many of my friends and family are in medicine and I know how unbelievably hard they work with so many restrictions and resources. Rheumatologist are in short demand not many want to specialise in this field.
AgedCrone• in reply to
We can only hope that now there are so many new interesting drugs appearing for auto immune diseases, maybe more medical students will think of choosing rheumatology as a career.
But as a specialty it’s right up there with dermatology & pathology...not glamorous at all!
It used to be said if you chose those two specialties you at least didn’t get night calls!
You have done the right thing dropping an explanatory note to your rheumy nurse. She will have at least weekly meetings with your rheumatologist & can report on your condition.....& possibly get you on another Dmard quickly.
Don’t dismiss the use your rheumy nurses....they have closer contact with their patients & can often be a great help getting the doctor to prescribe for you ahead if your February appointment.
Please don’t get too stressed ....I think we are all in a similar position.....there just aren’t enough Rheumatologists to get the regular appointments we need.
In the short term try speaking to your GP to see if he can either prescribe some temporary relief, or even wangle a rheumy appointment for you.
In the main, starting a complaints procedure for a situation that is beyond the rheumatologist’s control, is probably not conducive to a happy future relationship with your rheumy team.
I hope your nurse can help you quickly.
Talk to your GP about whether transferring to another hospital might result in better care. And talk to PALS about being seen by someone, even a specialist nurse could help.
That is unacceptable to wait a year to be seen after your last appointment. Especially if you have now been told to stop taking your meds. Are you on a cancellations list for a short notice appointment? If not you could try ringing every day to see if there are any cancellations. You shouldn't have to do this but sometimes needs must. As others have said there is a shortage of rheumy's and hence they get booked up quickly. My recent appointment stated I was to be seen in 6 months but the appointment came through for almost 9 months time. Do you have a number for the rheumy nurse in clinic? I would keep pestering them for answers/help. I hope you get something sorted.
I think the CEO’s of hospitals do know they have a problem, but these days a lot of managers want to tell the clinicians how to run their departments......meeting the bottom line is all.
If Consultants don’t want to work in a certain hospital.....nothing will persuade them until that hospital offers the conditions they need.....with all the nursing& other clinical support they require in the 21st century. After all we go to hospital for medical treatment not to compliment management on the mega expensive art work they choose to put in reception.
But until hospital managers solve the problem ...no amount of money thrown at it will help recruit good doctors.
Very true. And it’s consultants the run the hospitals, not the chief exec. If the chief exec doesn’t have a good relationship with the consultant, the CEO will soon be given the boot or will leave for ‘personal reasons’ 😀
Thank you everyone for your advice. I had an email reply late this evening from the head clinic nurse I will see her on Thursday as she had a meeting with my consultant who cannot see me before Christmas and will explain the result of this meeting on Thursday. At least I’m not left in limbo.
Pippy25• in reply to
Glad to hear you've got this appointment and a point of contact via the head clinic nurse. Take care x
Mmrr• in reply to
That sounds like a good result. I hope Thursday goes well.
Hi, whereabouts are you based?
Have you only had one appt in this time?
• in reply toTheBoys
I live in Birmingham I’ve only had one appointment with the registrar in 18 months and battled for that appointment with the help of the head clinic nurse and constant emails and photos being sent to her and passed on to Rheumatologist result methotrexate injections rather the tablets with a follow up appointment last week where i was put on sulfasalazine as ( after she spoke to the Rheumatologist) there had been minimal improvement on injections. My next appointment with Rheumatologist is February.
KittyJ• in reply to
Oh I thought you hadn’t seen anyone for 18 months. I don’t see my rheumy every time I think that’s the norm at my hospital.
• in reply toKittyJ
I’m normally seen every 12months but from February this year I’ve been barely able to work, walking, using my hands my right elbow has been troublesome unbelievable swelling and the fatigue!!! After steroid injections failed 5 months of constant emails and photos I got a cancellation appointment with the registrar. (Who said he would talk to my consultant) No improvement on his plan and requested an appointment with consultant and booked through his secretary only to be told on the day of appointment I wasn’t seeing him but a practice nurse. After my allergic reaction begged to see consultant but can’t until February. So that would be over 12 months since things started to spiral out of control. It’s great that my clinic nurse communicates with him for me but I need to talk and express my problems . Am I being unreasonable?
KittyJ• in reply to
I’m not saying you’re being unreasonable but it is a fact that we don’t see our consultants all the time now, interspersed with specialist nurses/registrars. I really wish we did but those days seem long gone 😔I’m glad you now have an appointment.
Can you see your GP perhaps to put your case? Are you able to look at using a diff hospital under patient choice arrangements. Or failing all that, who is your MP. Write to them asking for their help. I had to do this when chasing up my results ( lungs etc) at Barts....
Perhaps temporary experimental self medication is an idea? I suggest investigate Magnesium, Allicin, Pernaton ( or equivalent ) and possibly no dairy or sugar.
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