Assessing the needs of the adult with spina bifida

Abstract

In recent years this society has heard of the plight of people with spina bifida who have graduated from childrens' to adult services, and of the lack of cohesive medical and counselling services offered to them. In the Manchester area, a joint clinic for adults has recently been set up, consisting of a Neurosurgeon, Nephrologist and Clinical Psychologist. Patients attending are those who attended the joint paediatric clinic who are now 16+ and new referrals from GPs and other consultants. 30 people of appropriate age to attend the clinic were identified, and these were contacted by mail to inquire about the sort of services they would like to receive and any problems they have or foresee for the future. 13 replies were received, 12 people indicating that a joint 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 counselling were much in demand. Aids provided for mobility, and facilities for disabled people were not always appropriate for our respondents, who were quite vociferous about what they needed, but did not always know what was available. Conclusions to be drawn are that the joint clinic needs to include links with education, careers officers and counsellors, and that time needs to be made available to effectively meet the needs patients present. The clinic could act as a forum to collate experiences, and highlight the problems of the young disabled adult.