A furious mum 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.
10-month-old Marshall McGregor has a chromosomal defect called Apert Syndrome which causes the premature fusion of certain bones in the head, face, hands and feet.
Mum Mandy Powell said she contacted the council over six months ago and was told because he was under three-years-old, she claims they told her there was nothing they could do.
The tiny tot is fed every two hours and needs 24/7 hour care. His breathing difficulties mean he needs a tube into his trachea.
Due to his weakened immune system, Marshall is extra susceptible to colds and flu.
Brave Marshall regularly attends hospitals in Doncaster, Sheffield, Birmingham, Leeds and Nottingham for a variety of different health conditions.
Only two people in Doncaster has the syndrome and the breathing problems Marshall suffers has ‘never been seen before' by doctors at Sheffield Children’s Hospital.
Marshall has stacks of equipment which he needs on a daily basis and currently takes up half of the dining room.
Mum Mandy 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’.
When she mentioned she contacted the press, a senior manager came out to see her the next working day.
Mandy 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 out to assess the house and agreed work should be done.
But Mandy said she was left furious with the assessment.
“The council lady came round and basically said they wanted to get rid of the table and plumb a bath in it’s place – basically turning it into the dining room into a bedroom and wet room.
"I obviously took issue with that and was told that my only other choice was to move and I’ve already asked to that, I did when Marshall was still in hospital!”
Mandy, who lost a baby before having Marshall, was closely monitored throughout her pregnancy.
But the initial joy of Marshall being born quickly turned into her worst nightmare.
“I quickly realised he wasn’t right,” said mum Mandy.
“I started to panic and I was shouting for them to do something. It was horrific, the whole thing was so traumatic.
“When they took me away from him and I just laid there thinking he was dead and I didn’t hear anything for ages.
“The doctor came in and said his ears and head were a funny shape but I was more bothered about if he was going to live.”
Mum Mandy, 30, and dad Alex, 59, could finally bring Marshall home after 17 weeks. But the problems were only just beginning.
Mandy’s has a three-bedroom property in Woodlands with her three children which she rents off 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 that’s just for him and his things,” Mandy said.
“A space away from people having their dinner and coming in and having meetings. Just a place to put his toys.
“I despair knowing he has to live in a dining room – It’s so degrading it makes me sad.
“The council need to be more accessible – there hasn’t been a proper point of contact and I’m on hold not even past the council switchboard for 20 minutes.
“I have a book full of people I’ve contacted over all these months and it’s just so frustrating dealing with lots of different people telling you different things and others saying it’s not their problem but someone else.
“I just want what’s best for my little boy.”
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.
“We are working with the CCG to understand what caused the delays with this case and will be putting measures into place to prevent this from happening again.”
Dr David Crichton, clinical chair of Doncaster NHS CCG said: “On behalf of Doncaster CCG, I would like to apologise for any delay and inconvenience experienced by Ms Powell and her family.
“We were alerted to the case earlier this year, immediately ensuring a thorough health needs assessment took place. Since then, we have continued to address all health related needs and made a referral to Doncaster Council’s social care team for housing adaptations.
“We will continue to work together with Ms Powell and organisations involved to ensure that her son’s health needs are met and needs of the family are fully considered.”