Lane, 29, decided to share her story after seeing an Instagram post by comedian Rosie Jones, who also has cerebral palsy, sharing the Doctor Won’t See Us Now campaign.
It is calling for annual health checks so people with the condition can avoid long hospital or GP waiting lists when they are already struggling with their health.
After being diagnosed age two, Lane said as a child she received really “brilliant” care from the NHS, including offers of physio and occupational therapy.
But when she reached 19, she said this level of support dwindled and she faced long waits for basic support. It was not until a flare-up at 25 where she realised how little care she had had as an adult with cerebral palsy.
“Everything kicked in and I got referred back to all the specialists I needed,” she said. “From that point, I realised what I missed.”