Hayley Dean said her lad Seb got "lost successful the system" astatine Oxford University Hospitals NHS Trust
By Katharine Da Costa
BBC News
The parent of a terminally sick teen has said she fears infirmary delays whitethorn person shortened his life.
Seb Dean, 18, from Marlow, Buckinghamshire, has terminal crab and is besides 1 of lone 11 radical successful the satellite with a uncommon familial disorder.
His parent Hayley said an cognition to region his tummy was delayed due to the fact that of his modulation from paediatric to big services erstwhile helium turned 18.
Oxford University Hospitals NHS Trust said its processes had been improved.
Image source, Hayley Dean
Image caption,The teen is 1 of lone 11 radical successful the satellite with Mulvihill-Smith syndrome
The teen was diagnosed successful 2019 with highly uncommon Mulvihill-Smith syndrome and has premature ageing, weakened immunity, learning disabilities and benignant 1 diabetes.
In February, country to region his tummy was aborted aft doctors discovered his crab was inoperable.
Mrs Dean said her son's infirmary attraction was disrupted erstwhile helium turned 18 successful August 2022 and was moved from paediatric to big services successful Oxford.
Arsenal footballer Bukayo Saka sent Seb a connection of support
She said: "I conscionable felt helium got mislaid successful the system. I consciousness if they'd kept him successful paediatrics... possibly things could person got done sooner, possibly we would person had a antithetic outcome."
She said investigations connected his tummy were enactment backmost by 2 months to October 2022 portion the surgery, scheduled for January, was delayed due to the fact that of a disagreement betwixt paediatric and big doctors implicit who should behaviour it.
Mrs Dean said: "Six months to a twelvemonth [of remaining life] is what they said, which arsenic a household we are perfectly devastated due to the fact that he's conscionable a young lad and we emotion him truthful much.
"I felt truly fto down. They request to look into this present to marque definite this doesn't hap again to different families."
Image source, PA
Image caption,The NHS spot said it had been moving to amended the modulation for teenagers from paediatric to big care
In a statement, the learning disablement foundation Mencap said: "We person heard from a fig of families who person experienced issues transitioning wrong healthcare services, sometimes with tragic consequences.
"The precedence should ever beryllium the champion result for the idiosyncratic being treated alternatively than mandatory cut-offs."
Oxford University Hospitals NHS Trust said: "We person been moving to amended the modulation from children to big attraction for those of our patients who request to bash so, particularly for our patients with learning disabilities."
The teenager's household has organised treats for him including a video connection from Arsenal shot prima Bukayo Saka and a sojourn to London's West End.
His online crowdfunding leafage has raised much than £12,000 for further adventures.
Follow BBC South connected Facebook, Twitter, oregon Instagram. Send your communicative ideas to south.newsonline@bbc.co.uk
Related Internet Links
The BBC is not liable for the contented of outer sites.