Last November I had an appointment with my Rheumatology consultant who then considered that I was now in remission but would like to see me again in the following January. As that appointment approached I received another letter cancelling the appointment with a new date for one in March this year. Today I received another letter cancelling that appointment and giving a new date in May. All in all this will mean that I will not be seeing the consultant for six months and no explanation given. Now I'm currently reducing my Prednisolone with a view to stopping it in March and I wanted to talk about tapering off the Mycophenolate (MMF) as we are now at the two year period when it could be considered.
I find it most unsatisfactory and intend to contact the rheumatology secretary to find out what is happening and why. Depending on the reply I get I will then take it further. Vasculitis is not a disease that can be dealt with in such an offhand way and needs close liaison between patient and clinicians.
Grump over!
Written by
Albasain
To view profiles and participate in discussions please or .
Grump accepted and understood, mind you, don't envy you tackling the secretary, they go on special courses like politicians to learn how to not answer a question!!!!
I cannot understand this at all, John has seen his consultant every 12/16 weeks since diagnosis, 14 years ago. When he was reducing the prednisolone and then the MMF he was seen every 12 weeks. If his appointment was cancelled he was always seen within 4 weeks. I should ring the Rheumatologist secretary and ask for an earlier apt, explaining why you really need one.
Nor can I understand it. Because of the medicines I take it is a requirement that I have a blood test every 6-8 weeks because my GP, who prescribes the medicine, requires it so that he/she can monitor any effect the medicines have on my blood composition. Because I also monitor the same I normally arrange this myself with the blood monitoring unit at the hospital and the results are then sent to both me and my GP.
However, I still need to discuss with the consultant these results and determine as and when we can taper off any particular medicine together with any effect that occurs to my body/energy level/myalgia that may occur in doing so. This goes for the same with the Cardiologist, the Neurologist and the tissue viability nurses that I see throughout the year. All reports should go to Rheumatology who is my main consultant in regards my condition and also to me and my GP. There are occasions when I have had to inform my GP of any changes that have occurred and also other clinicians too when the information had not been available to them. Therefore there is a communication problem which does not bode well for the continued treatment of patients when one dept. does not know what the other is doing.
By having regular consultations every 8-12 weeks everyone should be well informed and any ongoing treatment modified as required.
As it is, my GP surgery is now aware of Vasculitis insofar that they have already identified another vasculitis patient, thanks in part to VUK's excellent Routemap which I gave them.
From my point of view, as the patient, there is much I can do to help overcome this disease but I need the professionalism of the clinicians to help in that and to be kept informed as to the whys and wherefores.
What I do not want is to be treated by tick box doctors who only treat a computer screen but not the patient. There is more to it than that.
But sadly today, the hospitals and GP surgeries are under immense pressure with increasing numbers of patients and with ever diminishing funding. I am well aware of that but it does not excuse a six month wait for an appointment!
So I will take the matter in hand and make sure that it does not happen again without explanation.
Hi I have had my appointments cancelled too usually if my consultant is poorly or has booked a holiday. Sometimes it cant be helped but you are unlucky to have that three times. I would contact their secretary and point that out to them as they may not have realised. You could also ask to see another consultant in the rheumatology team or for a cancellation with your consultant or they may be able to squeeze you in at the end of the clinic. Your GP may also be able to contact the team if you dont have any joy. Best of luck
I would definitely make sure his secretary knows - the appointments are mostly not cancelled by the doctor and his team but by central booking (probably, unless things have changed a lot). They make appointments 6-8 weeks ahead which is why, if a week is cancelled, there is this wait for that day's clinic to be fitted in alongside the existing longer term appointments. There is also no flag on an appointment telling the clerical staff that this patient is "urgent" in any way and needs fitting in somewhere else sooner. If you speak to the secretary and explain the problem - i.e. your medication has to be adjusted by the consultant, it may even be possible for you to be fitted in outside clinic hours.
I have never had a consultant's secretary be evasive without good reason. GP receptionists - now that is a whole different ball game.
PALS may also be able to make sure the communication between the departments is better - always worth contacting them.
I did telephone the rheumatologist secretary and behold he could not be more helpful! As it is, I now have an appointment scheduled for the 20th March plus through speaking with him I also have the Troponin test to be included in the standard blood test before I see Cardiology this month. There is also the possibility that he can arrange an Echo scan as well. If all goes well and the results are good I hope that I can be signed off from the Cardiology clinic altogether. Which will be a great result.
Yes it does, I have found this, nothing like the personal touch! Well done indeed and < I'm quite sure, we all wish you all the best. Please keep us informed, will you?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Mixed feelings about recent Manchester Royal appointment
Got my 5th Covid vaccine appointment
Your help needed again please - health care during the COVID19 pandemic 
Update on ... ongoing pain following injection. 71 year old male with Wegener's
Vasculitis Talk - RD&E, Exeter
