Newbie Here

[Kimmers1962]

Hi all. I’m new here. I was diagnosed with RA in 2008 and have previously been on Methotrexate, & Hydroxychloroquine, & am still on Sulfasalazine. In the past year I’ve gotten A LOT worse, crippled with pain & stiffness… so my Rheumatologist suggested Biologics. I was meant to have a Sciensus nurse visit yesterday to get me started on Benepali, but the nurse never turned up. I rang Sciensus around 3:45pm yesterday to see if the nurse was coming and they confirmed that I was scheduled for a nurse visit that day but that no time slot had been assigned. They were meant to ring me with an explanation but didn’t. No email either. Guess I’ll ring again today. I just want to get this treatment started. I can hardly walk at this stage. 😕

[virtualreality]

How frustrating. I had a similar thing happen when I started adalimumab - no nurse was assigned to the original appointment so it didn't go ahead. Luckily they were able to re-arrange the appointment for about a week later so things got moving soon after. Hopefully Sciensus will prioritise your appointment so the same happens for you. It sounds like they might need a reminder all the same. Wishing you all the best, and I hope the benepali is effective for you.

[Kimmers1962 in reply to virtualreality]

They booked me in to be seen this coming Thursday but then this morning I got a call to say a nurse will be coming later today. I’m not upset with Sciensus. I’m just trying to go with the flow. But I will definitely notify them in writing of what happened. Most good companies want to know if there’s a problem so the can address it. Thank you so much for your good wishes. I hope this medication is effective and brings the severe inflammation down. It would be so nice to be able to walk easily again. 🙂

[medway-lady]

Put this is writing to Sciensus, in my experience one of the most unreliable companies. Make sure it's noted so that you don't get forgotten again ! Just be polite but firm so when is the nurse coming etc.I found ringing wasn't good but in writing I got a response and resolution.

[Kimmers1962 in reply to medway-lady]

Thank you for your good advice. I will def write to them just to make sure they know that these sorts of things are happening and hopefully they do something about it. Looks like they will be coming today in the late afternoon. Fingers crossed! 🤞 🙂

[medway-lady in reply to Kimmers1962]

Two years ago they were dreadful and lied to me and I could prove it. Don’t ask how but if you say broken down and where it’s not good if a relative is on duty on that main road that day. lol So I wrote to MP and got a reply from Secretary of State for Health and they’d had a parliamentary review and were aware of issues. Since then I’ve had no issues except can’t find house, can’t find road and running late. But things have improved so it’s worth making a point of not prepared to be pushed around or mislead.

[RAGuy]

Hello

I am sorry to hear of your RA impact and to have this happen on top of all that. It is absolutely right to be polite but firm and assertive in your letter or any communications. It seems to be forgotten, at times, that we are people.

I would suggest that you also ensure your RA unit is notified of this poor performance. Recording of all similar incidents is important.

Good luck and best wishes

[Kimmers1962 in reply to RAGuy]

I have let my Rheumatology team know about this. Apparently I just fell through the cracks. But Sciensus now say the nurse is coming out today. I hope so! I just want to get better. 🙂

[stbernhard]

It's hard sometimes when your body is hurting. You just want to get better and are ready to deal with it only to be let down by institutions. Please do complain in writing and keep a copy for your records. I hope the new medication will make your everyday life much better.

[Kimmers1962 in reply to stbernhard]

Thank you. It’s been a really rough year. Just hope this medicine will help. As it stands I can barely ambulate and the steps I do take are incredibly painful in both knees and ankles. Thank you for your kind words and good advice. 🙂 I’m glad to have found this community. It’s nice to hear from others in similar situations. Good to be able to encourage and empathise with others. x

[Louise0000]

They have been fantastic for me seems like an oversight on their behalf. I'm sure they will correct the error good 🤞