Demand for improved clinical care for cerebral palsy sufferers 'an undeniable call to action'
Kitty Maeās mother has been fighting to get better services for the little girl. Picture: Lisa Hayes
A survey by the Cerebral Palsy Foundation found 93% of people with the disease see āimproved clinical careā as their biggest need, reflecting the fears of Cork mother Lisa Hayes.
Cerebral palsy affects 12,500 in Ireland, with 150 new cases diagnosed here annually, and is the most common childhood-acquired lifelong physical disability.
It results from brain damage before or during birth for various reasons.
Ms Hayes said: āAt the end of the day thereās a little girl with a disability and itās about her life.
āI do have great hope for Kitty Mae being able to make choices for herself when she gets older.ā
At two and a half years old, her parents are already taking Kitty Mae for treatment abroad due to gaps in care here.
āWe do as much as we can ourselves,ā she said.
ā[Cerebral palsy] can cause so much trouble for the person in their life. If they donāt get that intervention, then the secondary issues ā orthopaedic, respiratory, feeding ā can have a huge impact on the personās life.ā
She added supports she and her husband receive from other families was vital.
āA normal family can achieve a huge amount,ā she said.
The survey, published on Tuesday to mark National Cerebral Palsy Day, found 93% of 400 people surveyed want āimproved clinical care, therapy, and interventionsā.
Improving Government grants for carers was a priority for 88%.
The foundation pointed out lifetime medical costs have been estimated at ā¬1.4m per person.
Some 97% said access to regular treatment was a problem, and 87% face challenges having appointments prioritised. Some 88% said mental health treatment was āvery importantā.
Lack of training for school staff was identified as another gap by 89%. Some 87% called for āimproved educational environmentsā.
The need for continuous support as people age was a priority for 92%.
Denise McDonald, the chair of cerebral palsy at Trinity College Dublin, said people needed to have confidence in services.
āEvery individual should have access to timely and expert assessment and therapy input across the lifespan, with timely efficient pathways to specialist interventions when required,ā she said.
Cerebral Palsy Foundation executive director Rachel Byrne called for the findings to inspire change.
āWhen 93% of our community identifies improved clinical care as their foremost priority, it presents an undeniable call to action,ā she said. Families reported gaps in healthcare, education, and support, she added.
More information can be found on cpf.com.
