A Sutton family say they are devastated after their disabled three-year-old daughter was denied a lift which they say would transform her life.
Elsie Novell has spinal muscular atrophy type 2, which means she is unable to stand or walk and, as the disease is progressive, most of her muscles will eventually waste due to a lack of use.
But her family have been told by Nottinghamshire County Council they cannot have a lift fitted, which her family say would give her freedom to move around the house on Berristow Grange.
Charlotte Novell, Elsie’s mother, said the family would raise money to buy the lift themselves – but that would disqualify Elsie from receiving thousands in funding for other much-needed aids and adaptations.
Charlotte, aged 31, said: “After 18 months of working with the council and occupational therapists, they have refused to put us a lift in to enable Elsie to access her home.
The only adaptations they are willing to provide is a ground-floor extension, which essentially puts Elsie out in the back garden, while we remain upstairs at the opposite side of the house.
“They know nothing about Elsie’s condition and refused to provide us with other equipment because their Google notes on SMA said she would be ‘too floppy’.
“I feel it is our responsibility to highlight the failings of a system that both my husband and I had put all of our trust into at the worst possible time of our lives.”
Derek Higton, council director for youth and families services, said: “The council’s occupational therapy team and Ashfield District Council are, of course, sympathetic to Elsie and her family’s situation and understand their frustrations.
“We’ve been working closely to find a safe solution to support Elsie living at home, as it needs to be right for her particular needs in the long term.
“Following a thorough risk assessment at Elsie’s home, our OT experts were able to gather evidence to build a picture of her needs.
“Based on their years of clinical experience and knowledge, the option of installing a lift was discounted for a number of safety reasons which we have fully explained to the family.
“While the lift may not be the right solution for Elsie, a recommendation has been put forward for a new build bedroom/bathroom extension, to ensure Elsie’s care can be supported safely and in the long-term at home.
“In the meantime, Elsie has been provided with the specialist equipment she needs and our occupational therapy professionals will continue to review this regularly as her needs change.”
Ben McVay, a reporter with your Chad, was so moved by Elsie’s plight that he is running the Northumberland Coastal Marathon on February 25 to raise money for vital home adaptions which will help give the youngster a decent quality of life.
To donate to Ben’s marathon efforts, visit www.justgiving.com/crowdfunding/ben-mcvay-elsie-novell