World Cerebral Palsy Day. The Change I Want to See

Richard_Scope

I can still remember the day clearly. 

I’d not long turned 16 and there I was with my physiotherapist when they said: 

“It’s your last day with us today. Now you’re 16, we won’t be working with you anymore.” 

I’d done the standing frames. The casting – having my legs put in plaster to stretch my hamstrings. Missing time with friends. Night splints to sleep in. Surgeries. And more than a year away from my family receiving rehabilitation. 

This was it. 

I could live with my current level of mobility and physical function. 

I was free. 

Or so I thought. 

What was never mentioned to me or my parents – at any point – was what adulthood with cerebral palsy might look like. 

Cerebral palsy itself is non-progressive, but its effects can change as we get older. 

For some of us, that can mean changes in mobility. Increased fatigue or pain. New physical challenges. Or simply struggling to find healthcare professionals and services that understand cerebral palsy once we have moved into adult services. 

This year, for World Cerebral Palsy Day, we are being asked to answer one question: 

The change we want to see for cerebral palsy. 

My change is simple. 

Organisations and services must recognise that children with cerebral palsy grow up to become adults with cerebral palsy. 

We need to start having conversations much earlier that equip and empower young people and their families for adulthood. 

Those conversations must include healthcare professionals, services and decision-makers. 

Young people with cerebral palsy should understand what adulthood might bring, what support they may need, what their rights are and how to advocate for themselves. 

They should not have to discover all of this when something starts to go wrong. 

Let’s start these conversations sooner rather than later. 

Because knowledge is power. 

And growing up should never mean being left behind. 

@worldcpday  

#UniqueANDUnited #WorldCPDay