A North London mother-of-three has launched a charity to help adults with cerebral palsy, having experienced a lack of support in her own situation.
Emma Livingstone, 41, has established the Adult Cerebral Palsy Hub, whose first fundraiser will be a comedy night at the Chickenshed Theatre in Southgate on Sunday.
Diagnosed with cerebral palsy as a toddler, the Whetstone mum attended regular specialist physiotherapy sessions during childhood and a specialist consultant paediatrician managed her treatment.
But as an adult, her care has been largely under the jurisdiction of her GP and a range of physiotherapists and orthopaedic surgeons — none of them expert in the condition.
“My difficulties have got more pronounced as I got older,” she told the JC. “Because of the way I walk and the strain it puts on my body, I have had three hip replacement surgeries.
“While services are well developed for young people, the same is not the case for adults.”
According to the NHS, cerebral palsy is an umbrella term for a group of lifelong conditions that affect movement and co-ordination, caused by a problem in the brain that occurs before, during or soon after birth.
Around 111,000 people have the condition in the UK, similar to the number with multiple sclerosis or Parkinson’s disease. Yet the provision of services for adults pales by comparison.
“Because it is traditionally thought of as non-progressive and life expectancy is similar to the general population, most of the attention on services exist when you are a child,” Mrs Livingstone said. “But it is still degenerative.”
The charity will lobby the government and the NHS to develop services for adults that recognise their needs.
“Most of the operations I have needed have come later in my life,” she pointed out. “Half of people with CP will see a decline in their mobility by the time they are in their 40s.”
Mrs Livingstone was forced to give up work as a speech and language therapist after her last surgery due to a loss of mobility.
“We want to give a voice to the currently silent community of CP adults and help get support and development for better services,” she said.
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