In May this year, eight months after Matthew arrived at the hospital, the ICB says health staff requested a review to see if he was still eligible for NHS-funded Continuing Healthcare.
Official guidance says the threshold for this screening process “has been set deliberately low, in order to ensure that all those who require a full assessment for eligibility” have that opportunity.
It also says people should be given reasonable notice when this is to happen. Experts say that would usually mean a few days.
Matthew’s family says he was given just 10 minutes’ notice that an assessment or “checklist” would be carried out.
He called his parents, who live an hour away. They couldn’t get there in time to support him. He says he asked for the checklist to be delayed but was told it would go ahead without him.
We compared the checklist against previous multi-disciplinary assessments of Matthew’s health and care needs. There are significant differences.
In the checklist, his Tourette’s syndrome is mentioned in passing, and there appears to be little acknowledgement of the severity or impact of his tics.
There is also no mention of his ADHD, OCD, or the deep brain stimulator which is used to help control his tics, and which he requires help with.
The checklist was completed using hospital notes. The ICB says it was undertaken in line with the national framework, with health professionals involved in Matthew’s care.
But the family says the member of staff involved was new and did not know him.
“It just made me upset. So basically, they’re not listening,” says Matthew.
His family says his health has deteriorated since he was last assessed, but the conclusion of the checklist was that he was no longer eligible for CHC.
Claire Stone, NHS Surrey Heartland’s chief nursing officer says while it cannot comment on individual cases, it works closely with those involved to “provide support and advice and ensure a smooth transition to any new arrangements”. She also says “anyone who chooses to decline CHC care” can reapply at any time.
Surrey County Council says it began plans for Matthew to be discharged to a permanent home in June, adding that “at the heart of this complex case is an individual and it’s important that Matthew’s needs are put before anything else”.