Speaking at today’s launch of ‘a Cerebral Palsy Register For Wales’, North Wales Assembly Member, Mark Isherwood, who sponsored the event, said “utilised properly the Register will increase the voice of people who have Cerebral Palsy”.
The Register is the first national Cerebral Palsy Register in Great Britain and will record symptoms, assessments and ongoing care for people living with the condition, collected by health professionals and stored anonymously on NHS systems.
Speaking at the launch, which took place in the Senedd, Mr Isherwood told those in attendance that Cerebral Palsy is the most common childhood disability in the world, affecting 1 in every 400 children in the UK, and that around 70 babies born in Wales this year will have cerebral palsy.
He said:
“Due to the complex nature of Cerebral Palsy, multi-disciplinary clinicians from a variety of backgrounds - including, Paediatricians, Physiotherapists, Speech and Language Therapists, Occupational Therapists, Dieticians, Neurologists, Orthopaedics, and others - are often required to meet the needs of people with Cerebral Palsy.
“Accessing these services can be patchy, partly because we do not know where people with cerebral palsy live and what their specific different needs are.
“Cerebral Palsy Registers already exist internationally, from Australia to Northern Ireland.
“The Cerebral Palsy for Wales Register will be the first national Cerebral Palsy Register in Great Britain. It has been designed by professionals, families and people of all ages who live with Cerebral Palsy.
“As in Northern Ireland, a Cerebral Palsy Register would tell us the age, size and distribution of the population of individuals who have Cerebral Palsy in Wales.
“This would then allow services to be planned in a more efficient and effective way, and potentially bridge any gaps in provision. Research evidence and practice confirm that early intervention and accessing the right services from an early age can prevent some of the complications caused by Cerebral Palsy and maximise people’s potential.
“The Register is not a quick fix to the challenges people who have Cerebral Palsy face. It is a strategic answer to help make long term sustainable changes in service provision.
“The Register will act as an agent for change. It has the potential to highlight the needs of this group of individuals across many areas including, housing, leisure, education and employment. Above all, if utilised properly a Register will increase the voice of people who have Cerebral Palsy.”