Authors: Geraldine Long and Jenny Green, ASBAH, West Midlands area advisers
The ageing process has a significant impact on the lives of people with spina bifida and hydrocephalus, and more support from healthcare professionals is needed to improve quality of life, according to a recent research study undertaken by, ASBAH area advisers, Geraldine Long and Jenny Green.
The results show that many of the participants feel misunderstood by healthcare professionals who don’t seem to understand their condition. As a result, many service users say that they have accepted that there is little that can be done to help them to cope with the daily challenges that ageing with the conditions bring, such as suffering with pain and feeling lonely.
Geraldine and Jenny are pushing their study into many different avenues. Geraldine said: “We feel that it is very important for us to share this information with as many people as possible to promote interest in these issues.”
Journey into the Unknown has given an insight into the views of adult service users living in the West Midlands. Jenny has high hopes for what the study might lead to in the future: “We hope that the study will act as a trigger to encourage further research into these conditions, and focus attention on what it means to live with their symptoms.”
Download the study here.
