By, Lianne Kolirin
3 min read
By Lianne Kolirin , Lianne Kolirin
A Jewish disabled mother-of-three is calling on the government to invest in better provisions for adults with cerebral palsy (CP).
Emma Livingstone, 41, has been living with the effects of CP since she was first diagnosed as a toddler by a doctor concerned that she was not walking.
Throughout her childhood, Mrs Livingstone attended regular specialist physiotherapy sessions and a specialist consultant paediatrician managed her treatment.
But all that changed when she hit adulthood and was discharged. Since then, her care has fallen largely under the jurisdiction of the GP and a range of physiotherapists and orthopaedic surgeons — none of whom are CP experts.
According to the NHS, CP 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.
It currently affects one in 400 babies born in Britain, making it three times more common than Down’s syndrome. Around 111,000 people have CP in this country, similar to the number with multiple sclerosis or Parkinson’s disease. Yet the provision of services is non-existent by comparison.
While research into MS and Parkinson’s is funded by the government, there is nothing in place to support adults with CP, argues Mrs Livingstone, who lives in Whetstone, north London.
She has set up an online petition calling on NHS England to fund research and introduce “specialised medical pathways” for adult sufferers. She is also demanding a national register of patients in order to monitor and plan for the future.
Theresa Villiers, her MP, has backed her campaign and pledged to take the matter higher, as has Robert Halfon, a Jewish Tory MP who himself suffers from CP.
The condition has been traditionally thought of as non-progressive and life expectancy is similar to the general population. Yet, as she gets older, Mrs Livingstone’s condition is partly deteriorating.
“Sometimes I’m exhausted just by living [with the condition],” she said.
The senior speech therapist was forced to give up work two years ago because of her worsening mobility problems. In September 2015, she underwent major surgery for hip dysplasia, but the recovery has been long and problematic.
But despite now being in “constant pain” and having to walk with crutches, Mrs Livingstone is determined to try to change the landscape for others.
As a self-styled disability rights campaigner who is active on many CP forums, Mrs Livingstone knows she is far from alone.
“I have become increasingly frustrated at the lack of knowledge and services available for adults with CP and know that my experiences are not unique,” she told the JC.
“Adults with CP face unique challenges that often require specialised care. Yet co-ordinated services stop on transition to adulthood.”
The problems, she believes, stem from a lack of knowledge and understanding about the long-term impact of living with CP.
“It used to be thought that, if you introduce early intervention, you get people to their optimum performance and then you can discharge them because that’s where they are going to be for the rest of their lives.”
Now, however, thinking has changed. “There’s a long-term impact involved in living with the condition for so long. You get mobility and age-related conditions like osteoarthritis and osteoporosis, plus you experience fatigue issues because you use so much energy.”
Besides the lack of provision within the NHS, there is also a dearth of support from the charity sector.
“When I looked at the Charity Commission’s website,” she reveals, “I found 69 charities with CP in the title — but not one is dedicated to adults.”
Though the picture appears to be mirrored worldwide, Australia, Northern Ireland and parts of Scandinavia are leading in making improvements.
Meanwhile in New York, the Weinberg Family Cerebral Palsy Center helps “people with CP of all ages to manage their symptoms and reach their full potential”.
Improved services could help thousands like Mrs Livingstone, according to Professor David Roye Jr, director of the centre.
On the centre’s website, he writes: “Medical issues that are almost unsolvable when patients come to us in their forties could be averted if spotted earlier.”
Mrs Livingstone does not expect a cure or an instant overhaul of government policy. “It’s not in my nature to accept the first answer but I just hope that I can get people talking and asking questions,” she said.
To sign Mrs Livingstone’s petition or to share your experiences, click here.
