A new website has been launched to provide general information about resources and services available in Scotland.
Cerebral Palsy (CP) is the most common physical disability in childhood, it is however, an umbrella term describing a variety of conditions. Although CP primarily affects movement and posture, people often have other symptoms, for example, with sensation and cognition or other associated conditions such as epilepsy. CP is a lifelong condition but what a person can achieve throughout life is influenced by the help and support that they receive. This support is often hard to find and people with CP are often overlooked, the “Cinderellas” of long term conditions.
Other neurological conditions, such as Parkinson’s, Multiple Sclerosis or MND are diagnosed later in life. People receive the life-changing news of a diagnosis and hopefully they have a support system around them. There might be family, friends, colleagues, who will also be affected by news of their condition. It is parents and unpaid carers who fight their way through complex health, social care and social security systems to do their best. But as they get older, they also get tired of fighting and that’s where support for people with CP falls down. How can you complain if you find it difficult to communicate? Who is going to be interested in your condition if people think that because you’ve had this condition since birth that by the time you’re an adult you are told you should just “get used to it”.
A diagnosis therefore is only a term. It’s a starting point, not an end and the truth is that at the early stages it’s difficult to predict how an individual child is likely to develop. Parents, families and carers told us that they were bewildered in those early years between diagnosis and entering school. It doesn’t stop there, cerebral palsy is a non-progressive condition, but that doesn’t mean a person’s health or mobility needs won’t change as they get older. Years of altered postures, altered movement patterns, seizures, medication and constant use of equipment all take their toll on the body. This is poorly recognised by professionals and those with CP alike.
For all of these reasons Bobath Scotland has launched www.cerebralpalsyscotland.org.uk (This link will take you away from our website). The site has been designed to be a general information resource about CP and services available in Scotland. Our aim was to create a knowledge bank which is easily accessible and easily updated which will inform people of their condition, how this might translate at varying points in their CP journey and forms of support available. Our initial focus was to provide a resource to parents and families of newly diagnosed children who may want to understand the nature of the condition, the different classifications, the range of professionals they might expect to meet and signposting to further information and services but there is the opportunity to develop as different groups, services and areas feed in. Please take this opportunity and help us to improve the lives of people in Scotland living with cerebral palsy.