People living with cerebral palsy, carers and researchers have joined forces to create an Australian-first kit helping general practitioners better understand and support patients living with the developmental disability.
The Murdoch Children’s Research Institute’s (MCRI) Neurodisability and Rehabilitation Group developed the CP for GPs resource after recognising that many GPs felt inadequately trained and resourced to help people with cerebral palsy maintain optimum health and function.
Lead by MCRI’s Professor Dinah Reddihough, the kit comprises 16 fact sheets covering many facets of cerebral palsy care. She said while cerebral palsy was primarily a disorder of movement and posture, there were a range of associated impairments including visual, hearing, communication and cognitive difficulties.
“There seemed to be very little information available about cerebral palsy specifically for GPs, yet the expectation on these practitioners is great and their time is limited,”
“Therefore, we felt that strategies needed to be put in place to assist them in the care of both children and adults with cerebral palsy and the associated complex conditions.”
One in 500 Australian babies is diagnosed with cerebral palsy, making it the most common childhood physical disability. The permanent condition results from damage to or dysfunction of the developing brain. Common symptoms include clumsiness, involuntary muscle movements, drooling, slurred or no speech and stiffness or paralysis.
While children with cerebral palsy are typically cared for by a multidisciplinary team of medical, nursing and allied health professionals, most families rely on their paediatrician to oversee their child’s care and provide information on various health issues associated with cerebral palsy management.
But for adults with cerebral palsy, there is no equivalent medical specialist and expertise is hard to find. Natasha Street, who has cerebral palsy, said that once she left the care of her paediatrician, there was no appropriate medical specialist for her to see. By her mid-20s she had been referred to a gerontologist. Natasha, who contributed to the CP for GP kit, believes this leaves GPs in a central position to provide care, source expertise and work with allied health professionals to better assist patients with cerebral palsy.
The Tasmanian social worker said things like specialised physiotherapy programs and pain management can make an enormous difference to quality of life.
“When you get into the adult setting you have to go all over the place to find what you need and it is a nightmare. I am doing everything I can to get the right information, but it is disconnected and difficult to find and I feel that the support isn’t there for me or my GP,” Natasha said.
“GPs are like the one-stop-shop, but they are very busy and don’t necessarily know how to help. I hope these fact sheets will give them what they need to help us reach our full potential.”
Natasha said she helped develop the CP for GPs resource because she wanted to contribute her knowledge and experience to help others unable to speak up for themselves.
“The rate of CP hasn’t gone down, but we are living longer and we want to get more out of life,” she said.
“I don’t want to sit in a corner like a pot plant. I want to be at work and participating in the community. If we really want people with disability participating in society, then we need to look at it holistically and our GPs are a part of that.”
The CP for GP fact sheets, which are available for download, cover issues including definition and causes of cerebral palsy, pain management, sleep, communication, early detection and diagnosis, mental health, navigating the NDIS and getting older with the condition.
The Royal Australian College of General Practitioners is also using the resource, which was funded by an Avant quality improvement grant, as the basis for online learning activities for their members.
(Source: Murdoch Children’s Research Institute)