The parents of a teenage boy with a rare genetic condition have said they are at “breaking point” after spending three years sleeping with him on their living room floor.
Lucas, 13, from Stoke-on-Trent, is one of only dozens of children in the world with the CNKSR2 genetic disorder, he has regular seizures and needs around the clock care.
He has a social care package for three support workers to look after him during the day, but his family is fighting for an NHS continuing care funding package to cover overnight care.
NHS Midlands and Lancashire Commissioning Support Unit said it was “actively working to address” the delays in Lucas’ care.
Following a lengthy battle with NHS Midlands and Lancashire Commissioning Support Unit, a package of two carers for the overnight period was agreed.
However, no care provider will take on the contract, and there is still disagreement over whether staff can lie with him, something his family said was vital.
Lucas has epilepsy, is non-verbal and is fed through a tube into his stomach, and his mother Becci said he “needs someone with him at all times.”
“He’s an active sleeper,” she said, “he’s given himself nosebleeds in the night. He has medication through his feeding tube which can get tangled, which is a strangulation risk. He even managed to pull his feeding tube out and we had to go to hospital with him.”
Becci added: “It’s very frustrating. You’re battling for something you should be entitled to. If you need that support, you should be able to get it. It’s very draining, we are on the verge of breaking point.”
Father Andy, who gave up work to focus on Lucas’ care, said they were surviving on four to five hours of broken sleep each night, which was “breaking this family, mentally and physically.”
He added: “He never asked to be the way he is. Follow the guidance, so we can have some quality of life. We don’t know how long we’ve got him for, all we want is to make the most of every single day.”
NHS Midlands and Lancashire Commissioning Support Unit said: “There have been differing opinions of clinicians and parents, which has led to a delay in the assessed care package being delivered, and we are actively working to address this.”
However, Andy said “that’s a blatant lie”, and only the nurse assessor who made the recommendation for funding had disagreed with them.
He added that 20 other health, care and teaching professionals agreed with them that Lucas required two carers to lie with him overnight.
FamilyThe family said their quality of life would only improve when an appropriate overnight care package was agreed.
Becci said: “We will keep going. We have to, it’s our job as a parent, but it’s slowly draining away at us every single day. “
