Ailsa's Blog 'Patient Programme – Excellence in Rheumatology Conference , Madrid'

[Pictured L-R: Gillian Coward (Northern Ireland), Jean Bailey-Dering (Wales), Ailsa Bosworth, Margaret Fisken (Scotland), John Rowland (UK)]

At EULAR (major international rheumatology conference held annually in European cities) which was held in London last year, Prof. G.D. Kitas, Consultant Rheumatologist, Director of Research & Development, Clinical Director, Ambulatory Care, Dudley Group of Hospitals, UK and Prof. Piet Van Riel, Head of the Department of Rheumatology, University Medical Centre Nijmegen, THE NETHERLANDS, approached myself, a representative of the Dutch patient organisation, and representatives from LUPUS UK and LUPUS Europe, with an idea to develop a patient programme to run in parallel with the Excellence in Rheumatology conference taking place in Madrid in January, 2012.

The idea was for us to develop a two-day patient programme on RA and LUPUS for 50 patients (25 RA and 25 LUPUS). We thought this was an excellent idea but made it clear to George and Piet that patients would only be able to attend if bursaries could be made available to cover their travel and hotel costs. It was confirmed very quickly that they had been successful in obtaining the necessary bursaries which we were all delighted about. We then spent the next 6 months determining the patient eligibility criteria, what the programme would comprise, the speakers and chairs and the logistics. We were all excited to be able to design a patient programme from start to finish and had many teleconferences discussing ideas during the last half of 2011. The language of all international medical conferences is English and so the UK is fortunate in this respect - so the first criterion was that all applicants should be able to converse in English. We also wanted to attract people who had not been to an international conference before if at all possible and who could also disseminate what they had learnt to as wide an audience as possible on return to their own country, through local patient groups, local rheumatology teams, their national organisations and the media.

We had 25 people with RA from 9 European countries, the UK, Netherlands, Spain, Poland, Romania, Hungary, Greece, Estonia and Belgium. Due to the requirement to be able to disseminate the information widely on return, we invited applications from NRAS Group Co-ordinators from across the UK so that they would be able to present information at local group meetings on return, contribute articles for our website and magazine and also talk to their local rheumatology teams about any specific areas of concern or interest. We had a total of 16 applications from the UK (more than any other country had!) and to ensure full coverage of all UK countries, divided them into England, Scotland, Wales and Northern Ireland. We offered one place to Arthritis Care and they put forward a candidate from Northern Ireland, so after pulling names out of the other three hats, we ended up with one representative each for England, Wales and Scotland.

All sessions were lively and interactive and everyone really participated well. An article together with comments from our UK participants and photos of the event will be published in our Members’ magazine out in April. I did a DVD interview with Prof. Ian Bruce (Manchester) raising issues which the day two workshops raised – if you are interested to watch it, here’s the link: youtube.com/watch?v=x-ya3oM...(Not working as expected?)

The following comments are typical of many received from the participants:

• Meeting has been stimulating and informative. Very good for networking both amongst UK group and with others. A learning experience in many ways. Many thanks. (Jean Bailey-Dering, Patient Bursary recipient, UK)

• A marvelous event. I especially enjoyed meeting patients from all over Europe…All presentations were of high quality and stimulated me to make more changes in my behavior. (Gillian Coward, Patient Bursary recipient, UK)

All in all, it was a very successful event and we hope that the organizers of EiR will consider running this again, perhaps for different disease groups, such as Ankylosing Spondilitis, Psoriatic Arthritis, Scleroderma, etc. and with different host countries organizing the programme so that other people get this great opportunity to share experiences and learn from each other.

Ailsa

[BossyBoots]

Really interesting interview Ailsa. The cardiovascular link to RA really needs to be highlighted in view of the fact that so many sufferers are ignorant of the connection. Let's not allow health professionals to dodge the issue by rheumatologists saying it is the responsibility of the GP and vice versa. I shall be tacking both of mine!