1000 Voices: The impact of ageing on the lives of people with spina bifida (Shine, March 2021)

Summary

Spina bifida is a developmental condition affecting the brain and spine, often leading to physical and cognitive impairments, and bladder and bowel issues. Widely regarded as one of the most severe conditions compatible with life, open spina bifida can result in significant morbidity, with numerous body systems and tissues affected.

Content

In 2020, Shine surveyed its members with spina bifida. All adults over 25 were asked for their experiences of living with their condition, changes as they age, their health services, and how their needs are met by health services. Over 1000 responses were received.

The results show that, although young people may be discharged from regular monitoring by health professionals at age 18, their health often deteriorates, mobility declines, pain increases, and emergency admissions for pressure ulcers, sepsis or UTI increase. Although spina bifida is a non-progressive condition, the impact of tethered cord, Chiari II, use of mobility aids, and the sequelae of insensate skin and immobility mount up.

Numerous adults reported that many aspects of their health, ability, and quality of life declined from around the age of 35. Many stopped driving, others stopped working, anxiety and depression worsened, at an age many non-disabled adults regard as their prime.

We can and must improve care for adults with spina bifida by planning proactive, integrated services from transition throughout adulthood. Shine asks you to consider how you can improve your services to do this.