E. L. E. F.
CARING AND SHARING, Newsletter 4
Report on the Informal Meeting held Thursday 30th March in Jerusalem by Representatives of Lupus Support Groups

The meeting was convened resulting from the Patients' Conference that took place concurrently with the Fourth International Conference on S.L.E.

1.Those Attending:

Fifteen representatives, names of whom are shown on the attached schedule.

2. Reason for the Meeting:

All representatives were disenchanted with the arrangements made for the Patients=

Conference.

The major points were:

• the Conference was reduced from two days to one. Attendees were therefore deprived of 50 % of the content of their conference and also paid higher conference costs than did the doctors.
• no reduction on the conference fee was offered.
• the room was inadequate, the meeting started late.
• other (mainly local) delegates arrived randomly.
• some support groups reps. were invited to speak, but others were not given an opportunity. Little preparation had been made in this respect.
• social events access for the disabled was very poor.

3. Conclusion:

The meeting agreed that representation should be made by Rudolf Hocks and Brian Hanner to the Organizing Committee of the Fifth Conference in Mexico 1998 for support group and

patient input to the organizing of the Patients= Conference. It was also agreed to set up, through the good offices of the European Lupus Erythematosus Federation (ELEF), an International Directory of Lupus Support Groups and where possible to advertise all major meetings.

4. Other Issues:

A general discussion ensued on the following items:

• the need for continuing education at all levels within the entire medical fraternity and across eg social services, citizen advice bureaux ect.
• recognition of the need for better health care in less privileged communities (esp Africa) and for wider awareness levels in more developed nations.
• the greater use of videos to assist in the above.
• the support group problems of language, inadequate funding and travel distances for members, and that groups across the world can work in differing ways.
• lupus is a "hidden disability" illness and that we must work together to educate others on its impact.