Gauchers National Workshop: More Time To Talk

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The Gauchers Association held its first National Workshop and 6th Annual General Meeting on 29 March 1998. After the Annual General Meeting and an illuminating talk by Dr Paul Schofield, the day was divided into 15 Group Discussions with doctors and families equally participating. Gloria Gordon, one of the facilitators and Committee Member, gives her personal impressions here:

I left home with plenty of time to spare. I needed to find my way to a new venue this year and I drove this spring morning with part joy in the beautiful flowers blooming in the gardens and the trees heavy with pink and white blossom, but with a slight fear of what the day ahead would bring.

A new season was coming alive, my favourite time of the year, and a new format, not the usual Conference and AGM with experts and doctors talking and explaining, and the patients, relatives and friends listening: with only short periods, at coffee times and over the lunch break, to share with each other their concerns and hopes and not feeling so isolated.

At the Workshop I was able to free-float during the morning. Each group I attended was very involved. The input from the various medical specialists was both illuminating and helpful, allowing everyone to be reflective and then to ask as many questions as they wished which sounded as though many questions had been perhaps bottled up for a long period of time and at last could escape and be answered in a supportive and caring environment.

There were pensive groups, intensive groups, lively groups, noisy and quiet groups, all learning together. It was such a positive feeling to see and hear.

One doctor said later: 'Families raised probing issues and there was a good two-way exchange of ideas.'

I had two groups to prepare for: one with teenagers and one with carers.

As I am sure you will understand and I hope agree with me, I will respect the confidence I hold not to report on the teenager group. My report on the Carers group is given on page 8.

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Source: Gauchers News July 1998

© Copyright Gauchers Association 1998