Support from rheumatology department???

[Whezziewhoozie]

Hi, just wondering what everyone’s experience with their rheumatology department? I am not complaining and know they are busy but feel like I have been left completely alone starting Biologics. When I try and get in touch (which has not been often) I get an email saying they will respond in 3-5 working day’s. A couple of times the nurse has called me back a week later and can’t get me off the phone quick enough saying she has other patients to deal with. I would hope I have been pretty sensible about the whole thing and only got in touch when absolutely needed too. For instance getting the blood test when I started etc

I have also tried to turn to other sources for help but my GP’s response is what is a biologic?

Just wondering about other people’s experiences. Thanks

[Deniseelk]

Depending on your query, when I started Benepali it was delivered to me by HAH. Their clinical nurse was the one who came to my home and taught me how to inject. She left me her contact details and I could call anytime if I had any questions or concerns ( connected with the Benepali). I have also called HRH admin on general matters like travelling abroad with Benepali, etc. Is there that option for you?

[Whezziewhoozie in reply to Deniseelk]

Thanks, Yeah I had the HAH but they were very like contact you rhuematology department for anything. Its more I feel pretty Nauseiated, and have been vomiting, thought it was a bug to begin with, but now its been a few weeks I am pretty miserable. Just dont know who to turn too

[KittyJ in reply to Whezziewhoozie]

I’m surprised that they think it’s ok to leave you vomiting for 3 weeks, that’s really not acceptable. Did they say it wasn’t your biologic? Have you just started on them? I’d keep ringing until you get an answer, sadly sometimes you have to be pushy and make it clear you can’t carry on like this. Let us know how it goes. Best of luck x

[Whezziewhoozie in reply to KittyJ]

Thank, no body has said anything yet as I can’t get through on the phone and have had an email, saying someone will reposed in 3-5 working days. I emailed them last week.

I did get through to a receptionist at the hospital and she said she would ask the nurse to call me but nothing yet and that was a few days ago.

I just feel like I have been left. I am happy to live through it if these are the expected side effect... well not happy but I can preserve for the greater good. I just want to know that nothing else is wrong!

Thanks you for your answer

[KittyJ in reply to Whezziewhoozie]

Vomiting isn’t something you should have to live through though. Keep trying, I hope you get help soon.

[AgedCrone in reply to Whezziewhoozie]

If your rheumatology department have been ignoring you, call the PALS office at your hospital & tell them you need to know NOW whether you should continue with your medication ......it is the rheumy department’s responsibility to monitor your response to a drug.....not a bit of guess work by yourself.

Don’t be put off if PALS try to give you some waffle about medication not being their responsibility .....tell them you know that but you urgently need to speak to one of your doctors or nurses to know what you should do.......& despite numerous attempts by you....you are being ignored. Patient Liaison is their job.... so would they please get liaising!

Good Luck...it’s not our fault & not really the fault of the doctors & nurses that we are left hanging about like this..... it is the fact that nobody is knocking the NHS into shape........despite throwing millions of pounds at it .....that just seems to disappear into the ether.....it doesn’t seem to reach the coalface where the patients are the ones losing out..

[Deniseelk in reply to Whezziewhoozie]

That’s not good enough. I would go back to my GP practice... maybe see another GP there? Hope it settles very soon.

[medway-lady]

Are you still taking it ? if so I'd stop and allow your body to heal for a while. I say that as I did with a cold and it was the weekend. Left it for a week then restarted. It was ok for me with a cold but continual sickness is much worse so I'd ask for an appt . with RA nurse or doctor asap and if you've stopped it and no longer feel sick at least you'll know for sure that this one is not for you. Although I would stress that it might also depend on how long you have been taking it as some side effects do diminish with use.

[Lolabridge]

I do think you should keep trying to phone and speak to a nurse in the Rheumatology department to explain about the sickness.

I think I must be lucky to have a patient help and advice line to phone where I can leave a message and get a call back from a nurse within a few hours, depending on how serious the problem is that I've mentioned in the message. I don't have a specific Rheumy nurse I can call (some do I think but my hospital does not offer that). I'm surprised you don't have something similar to a patient help line.

If you still can't get help directly then you could ask the GP to contact your Rheumy for you and get advice on what you should do ... a first step in getting your GP better informed about RA and current treatments for it!

Hope you get some answers and advice soon.

[Castroll]

Hi wheezie

I feel the same, I know the RA department are overrun, but they take ages to call back then say there is nothing they can do when u do get to speak to someone. But I do think the health care we receive depends on what area you live in the UK and what funding that area has. As I have heard others posting how great there RA departments have been. The last appointment I had with the RA nurse, I said I had photos of my swollen joints for her to see that she advised me to do, but she was not interested in looking at them, she was tapping her pen on the desk whilst I was talking, so I stopped talking and asked her what she thought and she said "what" sorry what did you say. I felt like crying and felt like she wanted the appointment to end asap, maybe she was having s bad day and I was her last appointment of the day. I felt like I did not get anywhere and I waited 6 months for that appointment. I have my next one this month and I am taking my husband with Mr do t don't forget to say what I need. Sorry for the rant.

[Fra22-57]

I would take advice of medway-lady and stop biologic a week seen as though you are getting no response from rheumatology but continue to try and contact them.I have had 2 occasions when had to stop a couple of weeks as your immune system is lowered more by biologic so your body cant fight off illness easy.My rheumatologist nurses seem better but rheumatologist isn't.seems they see me yearly now and then when I say I dont think biologic is working aswell as could etc its ignored saying bloods show different.Hope you are feeling better soon

[Crystal197]

Hi Whezziewboozie,

I would go to A and E or call NHS direct, if you get no response from GP or Rheumy team. Please be persistent , otherwise they will not get in touch. Good luck.