Globally two in 1000 live births result in Cerebral Palsy. Advancements in neo-natal and childhood healthcare treatments and technologies, disability policies, welfare rights, and adult health and social care services have influenced an increase in the life expectancy of people with CP. Recent unpublished data collated by Scope UK suggests that the population living with CP in England and Wales is 141,750,273. In general, the prevalence of impairment (CP and other conditions) is higher for women than men - 19.2% and 12% respectively (World Report on Disability, 2011), suggesting that women with CP are a growing patient group, who are increasingly living into older adulthood. However as they grow older and move across the critical stages of the female life-cycle: from menarche (adolescence, age 14-17) through child bearing and rearing (adulthood, age 18-55) to menopause and beyond (older life, age 55-75), they will experience specific bodily changes and related health issues.
Research has tended to focus on CP in childhood rather than its lifelong effects. A plethora of international studies demonstrate the unmet health needs of adults with CP, but there is little that focuses on how it affects women, particularly how it manifests over the female life cycle and interacts with specific bodily changes related to reproductive and sexual health. As women grow older, CP manifests in different ways, leading to an earlier onset of age-related health issues across biomedical, psychosocial and functional domains compared to women without CP. Such can involve experiences of pain, fatigue, functional loss, osteoporosis, fractures, deterioration in mobility, strength and endurance, metabolic syndrome triggered by chronic immobility, cervical spinal change, increased risk of falls and reduced balance. Women with CP may experience bladder and bowel problems, incontinence during menstruation, and specific issues related to their reproductive health including early and severe menopausal symptoms.
Although motor function (mobility, strength, endurance) changes for all during the maturation process, in persons with CP, musculoskeletal problems may become more pervasive, often with an earlier onset than in non-disabled persons. This process is sometimes referred to as accelerated ageing. A causal factor of this could be overuse syndrome, described in one qualitative study as ‘forcing my body over the physical limits. Pain may be due to how adults with CP perform an activity and routine movements, and is often related to soft tissue injuries in muscles, tendons, ligaments or nerves.
Disabled women in general, and women with CP in particular, are likely to encounter physical and structural barriers to healthcare facilities, medical equipment and procedures, such as breast scanners and cervical smears, and a lack of appropriate information about areas of reproductive health including menopause, pregnancy, contraception. Cancer Research UK reported that disabled women are a third less likely to participate in breast screening, and a quarter less likely to be screened for bowel diseases than non-disabled women.
Another factor often cited as a barrier to healthcare for women with CP is the pervasive misconception that disabled women are asexual beings and unable to pursue successful reproductive journeys. They have been discouraged and sometimes physically prevented from exercising their reproductive capacities and becoming parents. This has created a culture of healthcare services where organisational, physical and attitudinal barriers may impact negatively on disabled women’s reproductive health, putting them at higher risk of developing preventable chronic secondary conditions. Another issue is the problematic transition from child-centred to adult-centred healthcare, and the lack of specialist multidisciplinary teams and expertise specific to adults with CP in general, and women with CP in particular.