My last Rheumatologist often made some encouraging treatment decisions for me and booked 3 month future appointments all to no avail due to cancellation by various support staff. On my last appointment he recommended I come off Etanercept and go for an intravenous Tocilizumb treatment in hospital. He mentioned 3 times that if I experienced severe side effects to contact his secretary and not the rheumatology nurses. Two days after treatment I was so ill I honestly though it was the end and after several days in bed called his secretary who became quite annoyed saying I should contact the nurses and not her, she wasn't interested in what the rheumatologist had said and actually put the phone down on me. I never heard anymore. When I found out my Rheumatologist had moved on to another authority I went through my GP service and after 6 months had an online consultation with a new rheumatologist who recommended Baracitinib. The hospital were initially very reluctant to allow my local medical centre to carry out the required qualification blood tests, I'm housebound. A few months later I started on the drug which was a huge benefit. The treatment requires ongoing blood tests which were booked and then cancelled due to lack of supplies, fortunately I had my next online consultation and asked my Rheumatologist if my drug would be stopped as a result, he assured me there wouldn't be a problem. To cut a long story short, it stopped and despite numerous emails yet again the various support staff are able to overrule. As you no doubt know the stress and lack of sleep has kicked off some awful flare-ups. I give in, and no doubt when I do get to speak to my rheumatologist again they will close ranks.
Who's in charge?: My last Rheumatologist often made... - NRAS
Who's in charge?
The lack of joined up action is very frustrating.Could you approach it by asking them what is the problem in the lack of communication? It might suggest that you are looking for solutions rather than 'accusing' the various parties? (which results in a defensive attitude).
Who actually does your blood tests? How are the results recorded? They should appear on a hospital website so that they can be accessed by anyone in that catchment area, so is the difficulty that the area (and laboratory) where you have the blood tests and where your rheumatology department is are in different areas? Is it possible for you to act as the person who gets the results and sends them to the relevant person?
Or is the problem that there is no, or a confusing, devolved care plan between the GP practice and the Rheumatology department? There should be a plan agreed by both parties so that the GP practice can prescribe the drug and monitor the blood tests once the rheumatologist has decided on the treatment.
My GP practice have been able to alter the timing of my blood tests themselves (e.g. during Covid and after the shortage of blood bottles) and, if necessary, after contacting the rheumatology department by email. Both GP and rheumatologist have access to the blood test results.
The lack of care from a service that swallows up so much of the government budget never fails to shock me. Is there any way you can contact the Rheumatologist who’s secretary didn’t help you ? I had to track a specialist down through google and called his home number. His wife was so helpful and he contacted me within a day . I feel sorry for the professionals who are trying to do the best for their patients but are being frustrated by the system .
Oh yeah been there and done that too. Please don’t give up you deserve to be treated with respect and not be allowed to get on with it. I’m a little confused why you’ve said that the baricitanib needs to be monitored by blood tests ? not in my experience I know to start with they checked my cholesterol but think I only had one routine blood test in 12 months of being on them. Sounds unfortunately like you’ll have to get shirty with them or go to pals or failing that write to your MP I had to once as I had my appointments cancelled probably 10 times a year and then they’d try and tell me I hadn’t turned up. Amazing what a note from a MP will do please don’t lose heart and fight back.
I asked them to contact my Rheumatologist and get back to me 10 days ago. They have only just contacted him today and basically told him that my drug won't be renewed, in their opinion.
If it was me I would write to your rheumatologist yourself and ensure it says private and confidential and would ask for an explanation as to why you’re being refused treatment. Maybe NRAS could help you if you give them a call. It’s not good enough and you need to ask again and keep asking if necessary don’t just leave it at the end of the day they have a duty of care. If it’s because your bloods are askew then they need to tell you that.
What really annoyed me is on my online consultation with the Rheumatologist I informed him about my blood test being cancelled due to the nationwide shortages of blood tubes, he assured me that my prescription had already been approved, but non medical staff are able to overrule.I'm convinced that due to the incident with my previous Rheumatologist I have been blacklisted. I know this happens as I've heard from others who have experienced it.
Yeah I know what you mean I’ve thought that before non clinical staff do not have the right or the power to overrule a consultant. If it was me I would write one more time then get in the big guns MP I have never had another problem since they wrote a quick note and at the time I was at the end of my tether. It did help that the consultant I was under at the time was finally made to retire as he worked one day a week if that. I disliked him immensely his lack of care was partially responsible for my immune system being knocked out as a result of RTX the nursing staff kept saying you need to see your consultant but he was never there hence the constant cancellations. The upshot to this is MP wrote a note my appointments weren’t cancelled anymore and my new consultant is fantastic exactly how you would expect a doctor should be (well we all pray they are). I have told him if he ever considers leaving I will superglue him to the seat. I really hope you manage to sort it out but maybe your GP might have a little sway and write to them on your behalf. Bad situation but it can only get better. Keep us updated how you get on.
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