Studies call for redefinition of cerebral palsy for adults
Like most of the medical negligence team specialising in cerebral palsy claims, I tend to see the impact of the condition on babies and children, since the cerebral palsy most of our clients live with has been caused by brain injury during or immediately following birth, usually because of negligent care of the mother and the baby.
However, independent research from both the Evelina London Children's Hospital and the University of Michigan have identified the need for a redefinition of cerebral palsy, away from being termed a childhood condition, so that adults living with cerebral palsy receive consistent and appropriate care.
In the US, for example, even though there are currently more adults living with cerebral palsy than children, the US national public health agency (Centers for Disease Control and Prevention) label CP as 'the most common motor disability in childhood'.
Scientists at the University of Michigan now say that this narrow definition not only undermines cerebral palsy as a lifelong condition, but encourages academic and medical focus to be directed only at paediatric care, rather than lifelong care into adulthood.
What the university research highlights is that as children with cerebral palsy grow into adults, they can face gaps in their care when they no longer fall under the paediatric category, which some describe as like 'falling off a cliff'.
Many find that there is a lack of understanding around how to treat certain factors associated with their condition as they age, such as physical therapy, early onset of secondary conditions including osteoporosis, hypertension, diabetes and psychiatric disorders.
The indication is that most standards of care for adults with cerebral palsy are carried over from the care they received as children, focusing on individual body parts and addressing spasticity, joint contractures, pain and musculoskeletal disorders, leaving no standard of care for adults.
The same is identified in a smaller but equally impactful study by the Evelina which provides tertiary care for children with CP across south-east England. Evaluating a questionnaire completed by young adults with CP and their families, the conclusion was that most found significant challenges with transition pathways and adult care once they were outside of paediatric care.
Failings with this transition pathway mean that many young adults continue to rely on paediatric services or end up discharged into primary care services, with little or no specialty service available. The suggestion is that young adults be offered annual reviews with specialist healthcare professionals to identify their health needs early.
The US study is also calling for the new definition of cerebral palsy as 'the most common lifelong physical disability' people can face, accepting that CP does not end with childhood.
The medical negligence team here is fully aware that when we quantify a claim for a child with cerebral palsy following admission of liability, we ensure that appropriate therapies and aids will continue for as long as the child needs them, and well into adulthood.
Most settlements also include the cost of purchasing or adapting accommodation that suits the needs of the client, also when they move into adulthood and the expert care team put in place early on gets to know the individual needs of the client and can adapt with them as they move into adulthood.
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