Disabled boy ‘has to live in dining room’

HEALTH: A mother has urged Doncaster Council and the NHS to ‘get their act together’ as lengthy delays mean that her severely disabled 10-month-old son, who needs 24-hour care, has to live in a dining room.

A MOTHER has urged Doncaster Council and the NHS to ‘get their act together’ as lengthy delays mean her severely disabled son has to live in a dining room.

Marshall McGregor, who is 10 months old, has a chromosomal defect called Apert Syndrome which causes the premature fusion of certain bones in the head, face, hands and feet.

Mother Mandy Powell said she contacted the council over six months ago and claims she was told because he was under three years old, there was nothing they could do.

The child is fed every two hours and needs 24/7 care. His breathing difficulties mean he needs a tube into his trachea.

Marshall regularly attends hospitals in Doncaster, Sheffield, Birmingham, Leeds and Nottingham.

Only two people in Doncaster have the syndrome. Marshall has stacks of equipment which he needs on a daily basis and it currently takes up half of the dining room.

Ms Powell urged the council to move the family to a more suitable property more than six months ago. She said the communication between Doncaster NHS Clinical Commissioning Group (CCG) and the council’s health team has been ‘a complete joke’.

She said: “It’s been absolutely horrendous from the get-go. I was constantly told by people on the phone at Doncaster Council that because Marshall was under three, there was nothing they could do.

“I feel like we’ve been lost in the system and my little boy has suffered as a result. People do not talk to each other – the communication between all involved is a complete joke.”

Doncaster Council did send someone to assess the house and agreed work should be done.

Ms Powell said: “The council lady came round and basically said they wanted to get rid of the table and plumb a bath in its place – basically turning it into the dining room into a bedroom and wet room.”

Ms Powell has a three-bedroom property in Woodlands with her three children which she rents from the council. She said due to Marshall’s condition, his large medical equipment including his oxygen tanks cannot be moved upstairs.

“All we want is a space for him, just a room that’s his,” she said.

Damian Allen, director of people at Doncaster Council, said: “Ms Powell’s case has recently been heard by our adaptions panel and all of the requested adaptions have been approved. These will be actioned as soon as possible.”

Dr David Crichton, clinical chair of Doncaster NHS Clinical Commissioning Group, said: “On behalf of Doncaster CCG, I would like to apologise for any delay and inconvenience experienced by Ms Powell and her family.”

I feel like we’ve been lost in the system and my little boy has suffered. Mandy Powell, whose son Marshall McGregor has Apert Syndrome.