The parents of a severely disabled teenager have slammed his hospital treatment – saying he is getting worse not better.

Adam and Carla Iles’ son James suffers from dystonic quadriplegic cerebral palsy after being born at just 24 weeks.

This means the 19-year-old, from Iwade near Sittingbourne, has no useful movements in his limbs, is profoundly deaf and relies on others for all of his care.

Last month he was admitted to Medway Maritime Hospital in Gillingham after a re-occurrence of a rare condition called idiopathic pneumatosis intestinalis (IPI).

This sees the presence of gaseous cysts within the intestinal wall and is potentially life-threatening, causing severe abdominal pain.

But five weeks later, his parents say his condition has deteriorated and medical staff aren’t listening to them on how best to treat their son.

The hospital has apologised for any distress caused and says it is working with the family to improve the treatment.

Iwade resident James is tube-fed and cannot eat or drink anything orally, has a full spinal fusion and requires the use of a hoist for movement between his wheelchair and bed.

He has been cared for around the clock by his parents all his life.

At the weekend we reported how a Higham woman had complained about Medway Maritime after she was forced to call 999 from her hospital bed.

Last time James suffered with IPI in 2018, he was a child and under the care of London’s Great Ormond Street Hospital.

He was in there for two weeks, his condition was quickly diagnosed, a treatment plan put in place and he was then back home with his parents.

This time he spent 37 hours in A&E before being transferred to a ward where, according to his father, he’s suffered numerous issues, including staff not using a sterile technique when accessing an intravenous cannula placed near the heart.

His parents fear this could have potentially introduced infection into his bloodstream.

Frustrated Adam says despite admitting they had not dealt with the rare condition before, doctors haven’t listened to what he and Carla knew should be done as they had lived through it in 2018.

“The level of care has been horrendous,” Adam said. “James was left without fluids and nutrition for hours/days at a time, until the point where he was so unwell that the resus team were called and he was transferred to the high-dependency unit.”

He added: “Due to the trust’s acts or omissions, a relatively well James has ended up in a critical condition.

“We are not medically trained but we are experts in James and [medics] have not been taking our opinions and knowledge on board.

“We haven’t gone through medical school but we do know our son and his complex medical needs.”

He added: “They are jeopardising the safety of our James. They just will not listen.”

Both parents have devoted their lives to ensuring his every need is met.

Adam said: “You think when you are taking someone into hospital they are going to help them and they are going to make the person better.

“Instead James has deteriorated under their care. That needn’t have happened.”

Carla states her son has never had a bedsore at home but after waiting four days for the necessary air mattress pump they requested, he ended up with three of them.

“That could easily have been prevented,” she said. She says the family have had some close calls and scares in the past as they live with James’s complex medical needs, but this has definitely been the worst.

“He’s been in intensive care before and we’ve had some very scary times over the years but this is very scary in a very different way,” she said.

“It’s scary because we have had to fight against the level of care he is getting.”

During his time at the hospital, Adam and Carla say his care has been “inadequate and dangerous with some life-threatening situations occurring”, including “a failure to provide enough nutrition – causing him to have a dangerously low blood pressure, virtually unresponsive and end up in the high dependency unit for 12 days”.

Despite admitting they had not heard of his condition, Adam says the staff seemed to prefer to “guess on a treatment plan, or have no plan at all, hoping it will fix itself”.

Friends of James’s were even encouraged to lobby the trust with letters in a bid to get them to listen.

“We thought by lobbying the board, it would stimulate some response, as I had written an email to the chief executive and not had a response in 10 days.

“Our MP Gordon Henderson has also been involved and is struggling to get engagement with the trust.”

After five weeks Adam says doctors are finally starting to listen.

But he says “it has come too late”, and long after they escalated their concerns to the senior leadership team.

Medway NHS Foundation Trust chief executive Jayne Black said: “We were very sorry to hear Mr Iles’ family is unhappy with the care he has received during his stay.

“We are talking regularly with the family about their concerns. We apologise for any distress caused to Mr Iles and his family.”

In the long-term Adam says he would like to see an improvement plan in regard to attitudes, training, and competencies for medical staff.