ASSESSING THE NEEDS OF THE ADULT WITH SPINA-BIFIDA

In recent years this society has heard of the plight of people with sp ina bifida who have graduated from childrens' to adult services, and o f the lack of cohesive medical and counselling services offered to the m. In the Manchester area, a joint clinic for adults has recently been set up, consisting of a Neurosurgeon, Nephrologist and Clinical Psych ologist. Patients attending are those who attended the joint paediatri c clinic who are now 16+ and new referrals from GPs and other consulta nts. 30 people of appropriate age to attend the clinic were identified , and these were contacted by mail to inquire about the sort of servic es they would like to receive and any problems they have or foresee fo r the future. 13 replies were received, 12 people indicating that a jo int clinic would be of use to them. Results indicated that a total of 42 contacts with medical, paramedical and care services were lost, and 24 requests were received for contact to be resumed. Replies made it clear that guidance on work, education, social provision and sexual co unselling were much in demand. Aids provided for mobility, and facilit ies for disabled people were not always appropriate for our respondent s, who were quite vociferous about what they needed, but did not alway s know what was available. Conclusions to be drawn are that the joint clinic needs to include links with education, careers officers and cou nsellors, and that time needs to be made available to effectively meet the needs patients present. The clinic could act as a forum to collat e experiences, and highlight the problems of the young disabled adult.