Bladder, bowel, and sexual dysfunction are overlooked in the management of neurological conditions: a qualitative interview study

Background One in six people in the UK live with a neurological condition, of which many experience bladder, bowel and sexual dysfunction that are present during the time of neurological diagnosis. However, it not clear whether their bladder, bowel or sexual symptoms are considered when formulating a neurological diagnosis. This study aimed to explore the patients experiences of being diagnosed with and managing neurological conditions and the considerations of their bladder, bowel and sexual symptoms. Methods Semi-structured qualitative interviews were conducted with patients with a diverse range of neurological conditions. Interviews were recorded and transcribed verbatim and analysed using reflexive thematic analysis. A patient and public involvement group supported the pilot testing of the topic guide and the data analysis. Results Twenty participants (12 female, 1 non-binary and 7 male) aged between 30 and 83 and 13/20 people from the global majority participated in the study. Four themes and ten subthemes were identified: (1) Challenges within healthcare – dismissive encounters with healthcare professionals and systemic pressures directly impacting care. (2) Understanding and Advocacy – insufficient communication, education and expectation management across contexts, “I am the ruler of my own self”- self advocacy is essential and peer support. (3) Emotional and Psychological Impact – Grief – “you go through the grieving cycle; you’ve lost a bit of yourself” and difficulty describing sensations. (4) Sex Matters – Gender differences and sex remains a low priority within healthcare. Conclusions The findings demonstrate that during diagnosis of neurological conditions bladder bowel and sexual symptoms are overlooked in building the clinical picture, and the needs of managing these emotionally challenging and difficult symptoms are not being effectively met by the healthcare system at present.