A number of Scots with cerebral palsy have said they feel ‘forgotten about’.
It’s a life-long disability from birth, but some of those transitioning to adult services say they are not getting the same level of support.
A charity wants the Scottish Government to give adults with the condition the right to a specialist annual review.
Brett Love, from Dundee, has diplegic cerebral palsy. He’s unable to walk and has challenges with his sight and hearing.
It is down to the 20-year-old’s mother, Janis, to provide around-the-clock care.
“I didn’t really realise there wouldn’t be any other form of help for him – as in other services,” she told STV News.
“He’s always required help. Certainly when he was younger he was lighter. For myself it’s a daily challenge. Brett needs everything done for him from the minute he wakes up.”
As soon as Brett left school, his specialist care stopped.
‘That’s how we feel, neglected.’Janis Love, Brett’s mum
“There is nothing in place,” Ms Love said.
“Which was absolutely the biggest shock.”
She told STV News: “Transition is supposed to come two years before they leave school. We have had very, very little in transition and then Covid started and he left school early in March.
“That’s been it really and we haven’t seen services at all. We had a couple of physio visits with little or no hands-on at all and that’s been really it.”
‘Lack of hands-on care and physiotherapy’
For 69-year-old Jackie Maceira, from Old Kilpatrick near Clydebank in West Dunbartonshire, the lack of hands-on care and physiotherapy is making his symptoms worse.
“Before lockdown I went to the gym, I was doing the multi-trainer, I was doing the boxing bag and I went swimming. I was doing that to keep fit and none of these things give me exercises for my legs,” he said.
“They’re stiffer than I’ve ever known and the spasms are worse at night now and people don’t realise when you’ve got constant spasms, it can be sore as well.
“When I go into a full blown spasm, you can punch me in the stomach and I’ll be completely solid and I can’t breathe and it’s just getting the relaxation to deal with it.”
‘Call for better healthcare services’
In Scotland around 150 children will be diagnosed with cerebral palsy each year and no two people will experience the condition in the same way.
Experts and campaigners alike want more data to be collected on the condition and for the decision-makers to improve access to healthcare services.
Stephanie Fraser, CEO of Cerebral Palsy Scotland, said: “What we find so often, people outwith here present to services with an issue and are told, ‘that’s because of your cerebral palsy and there is nothing that can be done’. Well, that’s not always the case.
“Denying people the access to services because they have a long-term condition, that’s an abomination.
For Ms Love and Brett, the transition from child to adult care has them feeling left behind.
“For me it’s quite a depressing phase, because where do we go?” Ms Love asked.
“Is this going to be him not getting anything now? There’s no guidance or pathways for him to follow and he’s only 20 so is he going to continually just be neglected? That’s how we feel, neglected.”
The Scottish Government said it is committed to ensuring access to the best care and support for people with cerebral palsy.
A spokesperson said: “We are investing £4.5m over five years to implement our Neurological Care and Support – National Framework for Action, to ensure everyone with a neurological condition like cerebral palsy can access the care and support they need to live well.
“Through the framework we are funding Cerebral Palsy Scotland to deliver a support and therapy service for people with the condition around Scotland.
“Scottish Government officials recently met with Cerebral Palsy Scotland to further discuss the care and support available to people with this condition. We will continue to work with NHS, third sector partners and people with cerebral palsy to drive up standards of care.”