4 weeks ago I had an emergency appt with the rheumy nurse as I had been feeling soooooo bad and miserable. Nurse consulted with the rhuemy and decision was made to increase the MTX dosage and refer me for an urgent appt for an Ytrrium injection.
At the beginning of the following week it occured to me that I didn't ask how long I might be waiting for said injection so rang the nurse. Around 6-8 weeks she said - the referral has most definately been sent she said. If you don't hear anything in two weeks call me she said - no, no point trying the secrataries she said call me she said.
So yesterday I tried to call. Answer machine full, cannot leave a message. Hosp switchboard put me through to the rheumy secretaries. No can't see any reference to a referral on your record. Clinic letter is in draft but not sent. No we can't send anything as it's done by the secretary at the community hosp where the appt was, not at the main hosp. No can't get a nurse to call as they are short staffed which is why their message box is full and not taking anymore.
So rang Nuclear Medicine to follow up the referral and - left a message. Rang the rhuemy secretary at the community hosp and - left a message.
The rheumy sec rang back - yes the referral and the clinic letters are written but have not been sent - why? The nurse is on holiday and until she signs them they can't be sent. She'll be back on thurdsay. Secretary promises to then fax the letters over. 4 weeks after the clinic appointment!!
The lack of clinic letter is also creating problems as my MTX dosage was increased but my GP won't change the prescription until the get the letter so I keep running out - I think they suspect I might be dealing them on street corners or something.
Luckily the secretary in nuclear medicine also called back and was very helpful, despite not getting a referral letter yet. She has reservered the first available appointment for assessment for me (bearing in mind this is only available because of a cancelation) 31st July!!! And this is an assessment, not the injection itself.
I shall be seeing my rheumy before then - longstanding appt made in December last. I shall be having a good old moan.
Meanwhile......I suppose I just struggle on.
Written by
Spuddie
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This is brillaintly written and so many people with Vasculitis can relate to this.. do you mind if I share this with the Vasculitis community please. anonymous of course. Hope everything goes well for you from now on and don't forget to have that moan!
all the best Susan
Spuddie that is dreadful, the run around we get from the hospitals could drive us into an early grave
Sorry to hear the above. It sounds all too familiar for many of us on here. For me it wasnt until my OH got upset that and advised me to contact the hospital PALS office or he would sound off !!!!!!!!!!!!They should be attached to every hospital and are easily available. I did this with reluctance as all I wanted in the end was a promised report from a nurse and to have an apt that was not cancelled at the last minute and rearranged several times,with me still waiting for months later,(other issues aswell-too many too mention). I was amazed at the prompt response. Not only did I receive the long awaited report but also the offer of review apts at the local hospital. there are still problems but I dont feel so helpless and frustrated. At least now I feel that when things are delayed etc I am given genuine reasons and promptly with a bit of care and concern thrown in.
PALS does work.
Let us know how you get on and hope all gets sorted soonest xx
Apalling.. clinic letters should be written in a time slot of 2 weeks maximum!
I agree with you summer....two weeks is more than long enough even if the nurse only visitis that particular hospital once a week - and to go on holiday and leave so much unfinished business.
I have worked in the NHS - I was a qualified nurse before I had my family, and I have worked at relatively senior levels of management since in other sectors. The levels of service being offered are appalling, and we simply accept it.
If I'd ordered a sofa 4 weeks ago and was assured that the order had gone in and then found out weeks later the person dealing with it had left it unsent for weeks and then gone on holiday without making sure the order went in I would now be furious and most likely would consider cancelling the order and planning not to use that company again. I would also expect, at least, an apology.
Can't do this with the NHS though can we.
Thanks for the advice about PALS - I have seen a poster at the hosp about them so I shall follow it up. But there is always that like bit that says, don't upset the apple cart 'cos you gotta keep seeing the same nurse...............
I shall battle on.......yet another battle.....to add to the long list of battles
Morning all! Hope you do get sorted Spuddie. I phoned PALS instead of going to their office, as I was worried with the consequences! I do now feel that they are impartial as thats their job, to make sure patients are being treated fairly and in your case you were definately not. The least that can happen is that they acknowledge your situation and no doubt you will be brought to their attention. Sometimes the staff are so engrossed in numbers they forget why they are there and just get immersed in the heavy workload. PALS will make sure you are not overlooked. The staff will probably be grateful for bringing it to the atttention of managers /PALS as it illustrates that their systems are not working and they will probably be relieved that someone is looking into it. I now have a contact number straight to the RA Dept manager/complaints officer and she always wants feedback as she says, so that the patients are being treated fairly and with respect and dignity. The hospitals etc cant/wont change anything unless they know whats going on and they are held accountable.
Well enough of my going on, but what have you got to loose? Ask the staff if they were in your position would they feel let down and frustrated? You are only human and going through a dreadful time with severe pain and discomfort. I bet they will really treat you differently in all your appointments and treatment soon after. Do it on the phone and then I feel its not so in your face. Write down all the above frustrations in bullit points, it does help. Good luck, I hope you find the courage to follow though as more of us that bring this situation to the fore the better. They are paid to do a job and so they should. GOOD LUCK xx
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Banging my head against a brick wall
Abatacept infusions still no further forward!!
Back to the clinic
ANGRY
Sooo Frustrated!!!
