A concerned Dundee mum has spoken out about the lack of support her son – who has cerebral palsy (CP) – has received since moving into adult services.
Janis Love, 57, is mum to Brett, 20, who was diagnosed with the condition at eight months old.
Having been well supported through early years and school, Janis was shocked by the challenge to access adult services.
Janis explains: “Brett was a preterm baby. He was born at 25 weeks due to me having pre-eclampsia.
“Brett also has a learning disability. He has visual problems and wears bilateral hearing aids. He’s wheelchair dependent and isn’t able to transfer independently.
“He basically needs everything done for him. He can’t wash or dress himself, or brush his teeth or get a drink for himself, for example.”
‘It’s quite distressing’
Brett received support throughout primary and secondary school. But when Covid hit in his final year, he had to leave school and the issues began soon after.
Janis continues: “We moved to Dundee in 2018. Brett had been at a specialist school in Cumbernauld where he had a co-ordinated support plan and was given all the support he required.
“When he moved to Kingspark in Dundee, his support plan followed on with him.
“But Brett left school in March 2020 due to the pandemic. Really, services ceased. I wasn’t aware the support plan would stop once he finished school.
“We’ve had very limited services since. I understand there’s been a pandemic, but at the same time, he’s 20 years old. He needs so much input and now there’s absolutely nothing.
“For me, it’s quite distressing because I see difficulties with him now. Without assessment and support, how do we know how he’s doing, unless I do it?”
Improved support desperately needed
According to a survey carried out by Cerebral Palsy Scotland, 65% of people with CP say health services in Scotland are not meeting their needs.
Furthermore, only 11% said health services were meetings their needs “fully” or “a lot”.
Janis, who is a retired NHS nurse, believes more guidance and recommendations from the government and health services would improve the lives of those with CP.
She says: “At school, Brett used to get different kinds of therapy: physio, occupational, speech and language. He also used to do hydrotherapy and rebound therapy.
Our recent survey revealed only 11% of people with cerebral palsy said health services were meetings their needs ‘fully’ or ‘a lot’.
Find out how you can support the campaign to improve health care services for people with #CerebralPalsy: https://t.co/NMQ5sNz8I9 pic.twitter.com/zMKyPGV4fv
— Cerebral Palsy Scotland (@CpScotland) February 6, 2022
“He’s been on a waiting list, apparently, for these services and nothing has opened up yet. Is that due to Covid or the service just not being there? I really don’t know.
“I think recommendations need to come from a collaboration of the government and the NHS. Having worked for the NHS myself, I know services are probably at a limited capacity.
“But I also think there should be clear recommendations for young adults, especially after leaving school, so they don’t drop off the face of the earth.
“Even seeing a consultant would put my mind at rest, just for someone to reassure me he’s doing OK.”
Charity support
The work of charities such as Cerebral Palsy Scotland fill in some of the gaps in support identified by their survey.
They provide free virtual or in-person therapy and have long been campaigning for improved support for those living with the condition.
Janis says: “Cerebral Palsy Scotland have certainly been a big help to us. Without them, I would have been totally lost.
“For parents whose children might be about to leave school, make sure you know well in advance what’s going to happen and have things in place yourself.
“Parents need to be made more aware, so we can do the best for our kids.”
A spokesperson for NHS Tayside says: “Due to patient confidentiality, we are unable to comment on matters relating to individual patients.
“Our Complaints and Feedback Team have received a complaint which is being looked into. Any findings will be shared directly with the family.”
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