Minerva centre preston

[Jacki08]

Just wanted to say a huge thank you to the NRAS for their input at the Minerva centre on Thursday evening. My partner and I were quite dubious about attending, I am relatively newly diagnosed , and have never been one for going to seminars etc- other than work related.

Wow--- what an inrormative few hours.

Alongside people from NRAS there were nearly the "" full team"" from the centre-- consultants, nurses, pharmacists, OT'S, pysio's and administration staff. Nearly everyone of them had a few words to say-- answering questions and the like-- but what really came across was that these dedicated people really care about the patient's who suffer from this horrid condition. Ian and I left feeling much better about things - knowing that help is just a phone call away and that I am not """ just an NHS number"". I also feel so lucky to have this facility as I know many people are not as fortunate in their treatment.

HUGE THANKS again to all those who gave up their time to be there. I am sure that all those who attended will appreciate it.

[nomoreheels]

Thanks for reporting back on the evening Jacki. You know why I couldn't make it much that we both wanted to attend, the reason why is asleep in the chair next to me having grabbed a few hours sleep in said chair last night! I'm pleased it was informative & it certainly sounds as though you've a good team there. x

[Jacki08 in reply to nomoreheels]

The best--'I'm very fortunate! ! They treat you as a person. Hope things soon improve at your end xx

[Hidden]

Interesting to read this. It would be useful to read people who are currently going through the diagnostic process as well as those who were diagnosed at this centre. Do they offer U/S or/and biopsy? Do they recognize inflammatory-marker negative arteritis..? (some patients are ingored or unrecognised due to negative labs despite the symptoms) That type of question. xx PS my current rheumy recognises my temporal vein swelling / visual disturbances and am already on predonisolone. (I also have RA etc)

[Kim-NRAS NRAS]

Hi Jacki08

Thank you for your post, myself and Gill co-hosted the event and can say we were too very impressed with the team at the Minerva Health Centre - I think they certainly set a benchmark!

I'm pleased you found the evening informative and hopefully you can make it along to further meetings.

Best wishes

Kim

[Jacki08 in reply to Kim-NRAS]

Yes - will be attending and will help in any way I can. My partner was amazed that the evening was more like"" a family get together " --- especially when one consultant introduced herself by using her formal title but then said she preferred if people use her Christian name!! I got the feeling that "we"" as patients were the important ones !!! Nice to have met you and Jill by the way--- nice to put a face to computer friends lol x