Family 'at breaking point' after care fight

The parents of a teenage lad with a uncommon familial information person said they are astatine "breaking point" aft spending 3 years sleeping with him connected their surviving country floor.

Lucas, 13, from Stoke-on-Trent, is 1 of lone dozens of children successful the satellite with the CNKSR2 familial disorder, helium has regular seizures and needs astir the timepiece care.

He has a societal attraction bundle for 3 enactment workers to look aft him during the day, but his household is warring for an NHS continuing attraction backing bundle to screen overnight care.

NHS Midlands and Lancashire Commissioning Support Unit said it was "actively moving to address" the delays successful Lucas' care.

Following a lengthy conflict with NHS Midlands and Lancashire Commissioning Support Unit, a bundle of 2 carers for the overnight play was agreed.

However, nary attraction supplier volition instrumentality connected the contract, and determination is inactive disagreement implicit whether unit tin prevarication with him, thing his household said was vital.

Lucas has epilepsy, is non-verbal and is fed done a conduit into his stomach, and his parent Becci said helium "needs idiosyncratic with him astatine each times."

"He's an progressive sleeper," she said, "he's fixed himself nosebleeds successful the night. He has medicine done his feeding conduit which tin get tangled, which is simply a strangulation risk. He adjacent managed to propulsion his feeding conduit retired and we had to spell to infirmary with him."

Becci added: "It's precise frustrating. You're battling for thing you should beryllium entitled to. If you request that support, you should beryllium capable to get it. It's precise draining, we are connected the verge of breaking point."

Father Andy, who gave up enactment to absorption connected Lucas' care, said they were surviving connected 4 to 5 hours of breached slumber each night, which was "breaking this family, mentally and physically."

He added: "He ne'er asked to beryllium the mode helium is. Follow the guidance, truthful we tin person immoderate prime of life. We don't cognize however agelong we've got him for, each we privation is to marque the astir of each azygous day."

NHS Midlands and Lancashire Commissioning Support Unit said: "There person been differing opinions of clinicians and parents, which has led to a hold successful the assessed attraction bundle being delivered, and we are actively moving to code this."

However, Andy said "that's a blatant lie", and lone the caregiver assessor who made the proposal for backing had disagreed with them.

He added that 20 different health, attraction and teaching professionals agreed with them that Lucas required 2 carers to prevarication with him overnight.

The household said their prime of beingness would lone amended erstwhile an due overnight attraction bundle was agreed.

Becci said: "We volition support going. We person to, it's our occupation arsenic a parent, but it's dilatory draining distant astatine america each azygous day. "