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PMR&GCAUK North East Support. Officially Launched

 

PMR&GCAUK North East Support and our DVD 'You are not alone'  was officially launched at the Centre For Life, Times Square, Newcastle upon Tyne on 12 May 2010.

Photographs thanks to Wendy Garratt www.wendygarratt.com

Project mananger, Margaret Wright said "The event was a great success with over 100 people attending."

 

Ms Mavis Smith Chair PMR&GCAUK North East Support.
Mrs Pam Hildreth, Secretary PMR&.GCAUK North East Support
Mrs M Wright BSc (Hon) Project Manager PMR&-GCAUK North East Region.
Mr Alan Tailford Treasurer

 


Members of Middlesbrough Support Group 

 

 

Dr Kate Gilbert Chair PMRGCA UK and Jean Miller PMRGCA Scotland

 

 

 

Participants in DVD

 

 

 

Speakers were as follows:-

 

Professor Bhaskar Dasgupta MBBS, MD, FRCP (an International Expert on PMR & GCA). Consultant Rheumatologist ,Clinical Director of Research & Audit. Honorary Professorship in Health & Human Sciences University of Essex. Southend University Hospital NHS Foundation Trust. Honorary President PMR GCA UK and patron of PMR&GCA UK North East support.

For a copy of Professor Bhaskar Dasgupta's speech click here.

 

Mayor of Gateshead: Mr John Eagle.

 

 

Dr. Vadivelu Saravanan, MBBS FRCP, Consultant Rheumatologist. Queen Elizabeth Hospital, Patron PMR&GCAUK North East Region and Trustee Director PMR GCA UK.

Dr. Michael J Plant MA, MBBS, MRCP, MD. Consultant Rheumatologist and Clinical Director James Cook University Hospital Middlesborough.

Ms Margaret Dayan BMBch, MA, FRCOphth Consultant Ophthalmologist Royal Victoria Infirmary Newcastle upon Tyne Hospitals NHS Foundation Trust

Secretary : Han Kruyswijk Stichting Marijke - Marijke Foundation, who travelled from the Netherlands and addressed the meeting specifically on the Sympomatrix, a diagnostic chart for the early recognition of Giant Cell Arteritis Marijke Foundation - Stichting Marijke, The Netherlands | Early diagnosis of GCA and PMR. info@marijke-foundation.eu

 

Medical professionals speakers as mentioned above

 

 

Twelve members of the Durham County Music Service, Supersonic String Orchestra, (an Orchestra which only has musicians between the ages of 7 and 17) with Conductor and Pianist Gordon Dike played as guests arrived at the event and later presented a cheque for £600 to Dr Dayavathi Ashok MBBS, MRCP(London)
Consultant Rheumatologist University Hospital North Durham:
Dr Ashok which the children had raised from a concert in aid of PMR& GCA UK North East support
 

Dr V Saravanan presents Professor B Dasgupta with a framed photograph of the Tyne area by Wendy Garret

 

The line up

Pam presents Mavis with flowers

 

 

A Question and Answer session was lively and the Medical people present answered questions from both Patients and Non-Patients.

The event closed at 12.30pm.

The event was well attended by the local media, BBC Look North (TV), BBC Radio Newcastle, the Middlesbrough Evening Gazette, Northern Echo and Whitley Bay Chronicle.

Link to Evening Gazette article:-
http://www.gazettelive.co.uk/news/teesside-news/2010/05/15/campaigner-launches-dvd-in-bid-to-help-other-sufferers-84229-26448131/

Link to Whitley Bay Chronicle Article:-
http://www.newsguardian.co.uk/latest-news/Friends-looking-to-help-other.6311402.jp

 


An account of the event by Eileen:-

Eileen

My husband dropped me off outside Newcastle Station and I walked across to the Centre for Life. Then it occurred to me I had no idea where exactly the meeting was to be! Oh well, the sign pointing to the Conference Centre seemed a good idea and I walked down to the glass doors. Just outside those doors, in a wheelchair, sat a lady in a purple outfit. Ah ha – that just has to be MrsK, I thought – and it was!

I think I can probably lay claim to being the furthest travelled to the PMR&GCAUK North East Support and DVD launch on May 12th 2010. I live in northern Italy and had just driven to Newcastle via Rotterdam and Hull, some 900 miles plus the overnight ferry. Was this going to be worth it all?

The day started with the usual registration stuff and getting a name badge. Some of us had photos taken by Wendy and all of us were sent off for a cup of tea and a chin-wag. There was a screen in one corner of the room where the DVD was being shown and side tables with information about PMR and GCA and the support group and a group of young musicians were playing to entertain us. The room gradually filled up with people, some of whom knew each other, some strangers. Then we were asked to gather in the lecture room: rows of seats with a “high table” where MrsK took the seat in the middle and was flanked by the other speakers – including doctors who are involved in PMR&GCAUK North East Support, both locally and nationally and the Mayor of Gateshead who had been invited but was not expected! She told us what was on the menu for the rest of the morning and warned us not to tarry too long at the end – otherwise we would be paying a ransom to get out of the building! Then the more serious business of the day got underway.

I won’t give you names and details of what they said (I’m sure that’s all elsewhere on the site) but after they had had their say the floor was opened up to the audience – which must have been over 200, there were very few empty seats – for a question and answer session. One of the speakers, a rheumatologist from Middlesborough, had mentioned that the first time he’d been invited to speak to the local group he’d gone expecting the usual Q&A part where you are met with an embarrassed silence and was bowled over with the intensity of questioning. In Newcastle, too, there were plenty of questions and a great willingness on the part of the experts to answer. Only the relentless ticking of the clock put a stop to that and after the presentation of some small mementos – you don’t often get away from the NE of England with empty hands – and a well-deserved bouquet to MrsK, most of the audience left and a much smaller group was left to have lunch and carry on talking.

And the overall balance? There was a short report on BBC TV’s northern news programme (unfortunately I was unable to see it) and that, combined with the turnout to the launch, certainly must send out the message that PMR&GCAUK is alive and well in the north east of England. The numbers who attended definitely show that this disease is not one which can be pushed into a corner and expected to give up the ghost, nor is it a “rare” event. If every GP practice were to have one doctor who is aware of the disease and how it may present, the long waits for diagnosis which are currently experienced would become a thing of the past and as the number of patients with a label for their symptoms increases, so will awareness. There is already research going on, once our group achieves a critical mass more will start to happen. The general perception is that these are diseases only seen in people over 60, pensioners, the retired – the evidence presented on May 12th contradicts that. Sixty is not old anyway but there are plenty of patients much younger than that. The proportion of young patients will increase as awareness rises and once a significant number of people still in work or with young families join the lobby there will be even more movement.

It was very obvious from what the speakers said that, although she may be in a wheelchair a lot of her time, MrsK is perceived by anyone who has met her and become involved in her mission as a force to be reckoned with – a woman to whom you do not say no! The work she has done over the last few months would make even a fit, young and experienced politician wilt at times and anyone who has had or has PMR or GCA will know what it does to our “get up and go” all too often. All of us owe her, and her four partners at PMR&GCAUK North East Support, a big thank you.

Was the trip worth it? Definitely! Thank you, MrsK, for inviting me. It was a pleasure and an honour to be part of PMR&GCAUK North East’s day.

Eileen H.
 

Finally, some comments on the day.

“What a fantastic success the Launch was last week, I really enjoyed it and appreciated all the time and energy you and the other two "witches" put into making it such a great and professional occasion.”

'That Professor, what a passionate man'.

'Those medics were warm, caring and showed it'.

'It was too short, we could have listened to the medics longer and to have a question and answer opportunity was wonderful'

'What I liked was the medics did not flannel, when they did not know - they said so”.

'The passion of the professionals was amazing'.

'I did not know there where Rheumatologists and Opthamologists in the North East who cared so much'.

Han Kruyswijk (Mr.) Secretary of Stichting Marijke, Marijke Foundation was very complimentary about all of you and most impressed with the afternoon seminar. (The Seminar referred to was sponsored by PMR&GCAUK North East Support

 

 


 

 

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