Kirsty Williams AM has signed a pledge supporting the creation of a cerebral palsy register for Wales, as part of a visit to Brecon Hospital on Friday 10th May.
The planned national register is intended to improve care for people with cerebral palsy, and the first stage of the project is starting in Powys. The register is being driven forward by a group that includes people with the condition, families, and health professionals.
Cerebral palsy is an umbrella term for a group of permanent disorders affecting posture and movement, as a result of brain damage occurring during pregnancy, around the time of birth or within the first two years after birth. It can make ordinary activities that are often taken for granted - such as walking, talking and dressing - difficult to do.
There remain gaps in knowledge around cerebral palsy, for example: the numbers of adults and children who have the condition; where they live and what their needs are; the quality of life of people with cerebral palsy; and the barriers people are experiencing to participation in everyday life.
It is hoped that a cerebral palsy register will facilitate long-term sustainable changes in service provision, ensuring patient needs are understood and quality of care is improved.
Kirsty Williams, Welsh Liberal Democrat Assembly Member for Brecon and Radnorshire, said:
“A national register could bring real benefits and it was really informative to hear about how the project is being taken forward.
“While there is no cure for cerebral palsy, treatments are available that can help people manage the problems the condition causes. It is very important that these treatments are informed by high quality information, ensuring services are tailored to patient need.
“Knowing more about patients who have cerebral palsy has the potential to significantly improve people’s quality of life and that is why I am happy to support the register.”