My rheumatologist is in a different town to where I live and it’s under a different Trust from my GP. I can only get my bloods done and Baracitinib prescription from there.
Baracitinib is not listed on my medication list at my GP surgery.
According to the ‘Guide for Social Distancing for Rheumatology Patients’ I come under the high risk category. I’ve been on Prednisolone for 7 years without a break and currently reducing down from 5mg, I’m also on blood pressure medication and Baracitinib.
I’ve not received a letter and rang my GP but they told me they can’t help as NHS England are sorting the letters. When I rang my rheumatology helpline the recording says to leave my details and they’ll call me back but will not discuss Coronavirus. I’m just concerned that I haven’t received a letter due to my Baracitinib not being on my medication list at my GPs and/or my other medications are not listed along with my Baracitinib at rheumatology. Has anyone else had this problem?
I decided to self isolate for 12 weeks but could do with some help with food ordering. I’ve been lucky so far getting a slot at Iceland but that’s getting harder.
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bernese1225
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Sounds like according to the brs chart you are right to shield . The letters have been a bit of a pain for everyone and rather frustrating to say the least.
Some rheumy units are being asked to do front line work too.
I got a letter from my gp but still havent had one from rheumy but miraculously I can get into sainsburys shopping site so that's helpful.
Have you self registered on gov.uk highly vulnerable site . They then investigate it . The drawback is no one seems to know what each other is doing !
Keep trying your helpline I think and what I did as lots of people on here advised me , was isolate anyway as you know you are at a higher risk and try call in favours of neighbours or look for local community hubs or volunteers that have been verified in your town. Then leave what you can 3 days out if the house if possible or wear gloves and wash everything thoroughly, then wash surfaces and shower you !!!
Thinking of you, its stressful isnt it but if we can hunker down and stay safe hopefully it will pass eventually x
Thank you allanah, I’ll register on the gov website now and try ringing rheumatology tomorrow. I know they are short staffed and the nurse who was really helpful left just before Coronavirus happened 😞 I might try contacting my consultant’s secretary as well x
Good for you ..... it actually does say on the gov website about extremely vulnerable to contact them after the end of march if you havent heard anything !!! Sounds like you have a plan !
Hope it goes well and let us know how you get on ....
Hello I only got my letter a couple of days ago so I think there's probably still many to come out.It came from the hospital but I haven't had anything from my GP.
I know it's getting hard to get deliveries.I have found some smaller local shops who deliver near me I found out via a local support group some people started on Facebook might be worth a look to see if there's anything like that near you.Good luck Jane.
I to have not recieved a letter. However I signed up to gov.uk for vulnerable people. You can do this without having a letter. They take your NHS number and do back ground health checks. Then your added to the official lisit for vulnerable people. It does take about 2 weeks to process and then get added to the government list of being vulnerable then hopefully things change you get the help you need. Stay safe.
My letter finally arrived on Friday. I posted about it not being what I expected.
Like you my Patient Access record does not show my current RA drug, which in my case is Truxima. It did show I am on Benepali ... which was stopped over a year ago! I complained to my surgery and they removed the Benepali but Truxima still not showing. It's on my list to discuss with my rheumy nurse at my telephone review next week.
I have a different area hospital too, and MTX isn’t on my GP list as I get it from the hospital. I have had a letter from my Rheumy (on Thursday) telling me to “shield” so hopefully you will get one soon.
I contacted rheumatology today and the nurse said I am in the high risk category and need to shield. She said if I’ve registered on the government website they will look at the last letter my consultant sent to my GP and I should get a letter within the next week and to ring back if I don’t. I’ll keep you posted.
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NHS Leeds rheumatology Covid-19 flowchart
