Hello well I got back from Barcelona but was tired yesterday so finally I get around to it!! Sorry Summer this is gonna be a long one!
Well I am so pleased to have had this wonderful if tiring experience lol! I got up at 6 am ....definitely a first for me in the last two years to get to the airport. Flying was easy, straight on straight off. At the other side waiting was a really posh car! I felt like a film star as the man in a suit was waiting for me with the board with my name on, and from a disability point of view he carried my case!!
So off to the modern hotel in the business area of Barcelona near the Uni and the hospital and the staff there were so helpful, again carried my bag etc! The other girl Debbie, I hope she doesn't mind me saying was an absolute hoot, laughed the whole time, she seems sorted mainly on her meds and has eight years experience of RA and runs. Self management group, just the type of person you want to meet whilst you r waiting on your drugs to work, that WILL be me!! So whilst I waited on meeting the staff I thought I could either go and rest and pace myself ....or be me and ask the reception where the open top bus was! So I got a Red route bus again thinking that then I don't need to walk too far, and saw the Olympic village, old port, old gothic area and lots of architecture from the bus!
It was not sunny it was pouring down, but the buses have automatic roofs that open in the sun and close in the rain, not that we saw much sun!
So we met the team David, Mike and Sarah, I was dreading them being monosyllabic doctors or business guys but they were young, dynamic and most importantly really really interested in patient opinions and experiences. We had a lovely masterchef type meal in a lovely restaurant in Barcelona.
During the meal we managed though to get a lot of points over as we were discussing them wanting patient ideas and points of view but I really stressed the importance of them not just " paying lip service" to us, but to really honestly keep the patients at the heart of the treatment with no pretence for mission statements ! But I feel these people really wanted to understand what it is really like to have RA.
Next morning back up to meet the team for 8.10 am, early for me but Mike had already been for a jog, OOOH I wish I could still do that!
We were taken to a hotel to start at 8.30am. We had been given a list of questions that we could expect such as when I'd u get your RA, what do you feel about your treatment, how did your family react and cope, a bit of your background, how do you feel your rheumatology and nurses treat you, how did you find healthcare at home. I found myself going into sex and relationships like the new Nras book! Got a laugh though when I said I couldn't swing off the chandeliers any more!
But I saw all the guys faces, there were two groups of about twenty I think at the workshops and they were genuinely interested and realised that we need to be treated as individuals and have more empathy and more holistic care. We also talked about more research ( there were scientists there) I said I though that finding out if our children were high risk for RA was good but that I didn't think my children would want to take strong drugs with horrid side effects as prevention, but that was only obviously my pint of view. They also asked what I would like to see research on, my answer was to pinpoint with some sort of test which drug would be the bet help to you, thus stopping his long period of try this one then that one which causes so many of us pain and loss of work whilst waiting.where others hit on he drug that works or them quickly.
Then lunch and back on the plane and drive back. So long, brilliant and inspiring. I do feel the future is bright with these young amazing people on our side. They did know a lot about NRAS as well and I for one are glad NRAS are continually fighting on our side with all their links!
So I am emotional as on a personal note I felt for the first in ages, valued and of use and for that feeling, I am very grateful.
Hope I spoke for all of you xxxxxxxx