Scand JHaematol - Suppl40, Vo133, 1984,567-568

“Where Do We Go From Here Boys, Where Do We Go From Here?”

D W ATTERS

The Haemophilia Society, P 0 Box 9, 16 Trinity Street, London SEl I OE, England

Since February 1981 I have worked as a full-time administrator for the British Hemophilia Society, which was founded in 1950. In the intervening years the work of the Society was carried out by dedi- cated volunteers, as Jim Hunter and Ken Polton. These members of the Society, by shedding of the administrative load, can devote themselves to wider issues of a national charity working for the haemo- philiacs.

There were two reasons why a “lay- man” was engaged by the Society:

The first was that the administrative machine had been “clogged and unable to cope”.

The other part lay in vision - and happily we still have visionaries in the United Kingdom even today - The Vision to See a New Way Ahead - and in this lay the real challenge in accepting change and implementing change. The new way ahead was to prove as tender and as de- licate as two lovers establishing their re- lationships and their roles. Throughout this time my role was that of a pilot, de- licately steering the middle course and attempting to prevent the ship from lurching too far to port or starboard while maintaining a steady course. But my role also lay in the development of the ser- vice - especially as it affected the ordin- ary member of the Society. This has

been achieved by slow and very sure establishment of a credible service to the membership. Members now know that the office will be an ear to their needs as those needs affect most areas of their lives - it may be that, confidence is needed to approach their physicians with a problem - and we would never go further than instilling confidence on medical question. Or it may be an en- quiry relating to welfare benefits and the various stages of appeal involved in ob- taining that benefit for someone with haemophilia. This is the prime area of the work.

There are a number of ways by which this is achieved. One important method is through our 26 local groups - the equivalent of Chapters in other countries. Again it would be only fair to say that a major part of my initial task was that of re-training many of our local Groups in the Rules and Regulations which govern the Society under the relevant Acts of Parliament. This resulted in publishing a set of guidance notes for such Groups and their officers. A particular role then lies in liaising with and encouraging the very stalwart band of volunteers who make this part of our work possible. They are a very excellent group of people and to them I pay the highest possible tribute. We also have an Annual Residen-

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tial Seminar for our Groups during a weekend when we thrash out various aspects of the Society’s life and future and chart out the next year and its ac- tivities.

In the U.K. we also have two groups for professional workers - the BASW/HS Special Interest Group in Haemophilia and Related Haemostatic Disorders and the Haemophilia Nurses Association. The Society maintains close links with both those Groups. A minor part of my responsibility - but an enjoyable and gratifying one - is that of fund-raising. In 1982 our first full year in harness, working together as a team, our income increased by 50 per cent and our mem- bership grew by 20 per cent.

My dream, my ambition and my aspiration is to make the national haemo- philia society respected and valued by people with haemophilia. I certainly feel my role to be that of a catalyst - enabl- ing all sorts of benefits to accrue to the life of the Society and the members of the Society. And of course without those members there would be no Society, no World Federation. In conclusion there is of course a challenge to change: to take a realistic look at your national organiza- tion and ask whether you too do not have the scope to develop the hidden potential which lurks just beneath the surface of your national membership. You, like us, may discover something new and valuable by taking on board the challenge of new direction and the change which that entails.