Amanda Richardson makes the case for a UK cerebral palsy register
Cerebral Palsy is a complex condition, and one which impacts every child differently. It effects roughly two in every 1,000 babies born in the UK, and is an umbrella term for a group of motor disorders thought to be caused by damage to the developing brain occurring before, during or immediately after birth.
When a baby is first diagnosed, parents are faced with a series of questions about their needs and abilities. At such a young age, it can be difficult to tell how well a child will be able to control movement and posture, their mobility and sensory processing faculty, and what challenges they may face in communication, learning, social and self-care skills. In those early weeks and months, neither the family, nor the raft of health professionals and therapists they meet, will be able to predict accurately the make-up of care and services they will need in the years ahead. What is certain is that the child will see a number of different doctors, nurses, speech and language therapists, educators, physiotherapists and other service providers who will all play an important part in providing the child’s package of care. But creating this package is a complex puzzle, and services are disjointed and communication across providers, the health service and local authorities needs to be improved. For many parents, the path that their child will follow is uncertain, and the unpredictability is overwhelming. The journey to achieve the right care and education can be long and hard.
A simpler system
During my many years as an educator working with young people with cerebral palsy, I have seen, and been humbled by, hundreds of parents fighting for the very best for their children. Even when it seems that the system is clunky, uncoordinated and under-funded, they become experts in navigating the bureaucracy required to achieve joined-up care. The onus should not be on the parents but on service providers who need to be on hand to guide families on their way. The system should be simpler for families and coordination must be made more straight forward to ensure the best possible outcomes for the child.
My recent trip to Australia, funded by the Winston Churchill Memorial Trust, opened my eyes to the ground-breaking innovations that can dramatically boost the life chances of a child with cerebral palsy. This work is not limited to impressive advances in medical and healthcare provision seen in Australian care units and research institutes. Steps taken by dedicated organisations such as the Australian Cerebral Palsy Alliance have enabled the Australian states to work together to rethink the patient journey in a way which makes life easier and more sensible for the patient and their family, service providers and the funders.
A coordinated approach
The creation of the Australian Cerebral Palsy Register (ACPR) in 2008 has given Australian states the oversight needed to enable the coordination and logistical distribution of services and for funding directed in a targeted fashion. The Australian register provides a research database to facilitate the study of the distribution, frequency and severity of cerebral palsy; the causes and determinants of cerebral palsy; the effectiveness of prevention strategies; and the planning and evaluation of services. It also allows service providers and researchers to identify interventions that effectively improve quality of life, causal pathways to enable prevention and to evaluate future preventative strategies
The Australian Cerebral Palsy Register, a highly secured web-based system, is used by researchers, members of the public, university students, individuals with cerebral palsy and their families, service providers and government agencies. In other words, the ACPR provides a wealth and variety of information about the condition, which can be used to enhance research, but can also provide a very clear picture about the current and projected requirements for those diagnosed with the condition. During my trip, I was told by government officials that data from the Register was used to inform health policy on disability, and that the ACPR was a respected source of data for the Federal Government. This confidence in the CPA’s data was reflected in a $2 million government grant via the National Health Medical Research Council to the CPA Research Institution.
Learning by example
There are now approximately 40 cerebral palsy registers and surveillance programmes operating around the world, providing enormous potential for collaboration between registers. The benefits reaped by the Australian Register have recently been recognised closer to home. In March, Wales launched the Welsh Cerebral Palsy. The project was led by the Welsh children’s charity the Moondance Foundation and, crucially, supported by the Welsh Government, who praised the move as “critical for research and development into cerebral palsy services and for coordinated care and education services for people with the condition”.
It is an indictment of the current level of provision available for children with cerebral palsy that the UK lags so far behind the rest of the world in collecting information about our own children with cerebral palsy. There is some excellent research and practice taking place in the UK, but we are over-reliant on data from other countries for research and information about cerebral palsy.
Because children with cerebral palsy require support from so many different services, and because each child faces their own particular set of challenges, a clear insight into their requirements is essential. Without this, service provision is at best guess work, and at worst a battle. We know that the life chances for a child with cerebral palsy can be increased dramatically with access to the right services in the earliest years. A better record could help ensure children with cerebral palsy have access to specialised education, physiotherapy, speech and language therapies and care. A better record could help the NHS and local authorities commission the right services for their area, empowering children and their families to obtain the right package of services and ensuring that funding is effectively utilised. A better record could dramatically increase what that child is able to do over the course of their life. For this reason, the UK Government should take action and establish a cerebral palsy register. Now is the time to bring about real change.
About the author
Amanda Richardson MBE is Chief Executive Officer at the charity Action Cerebral Palsy.