Westbury family’s battle over powered wheelchair for disabled daughter

A Westbury mum is desperately fighting to secure a new powered wheelchair for her disabled daughter. 

Karen Tilley’s daughter Josselin has Charge syndrome, a rare condition which impacts her organs and has left her blind and deaf.  

Josselin, 19, has previously been able to make use of a powered wheelchair which she received via the charity Whizzkids. When the machine broke, Karen applied for a new one through her service provider, the HCRG Care Group. 

However, last month she was told Josselin does not meet the criteria for a powered wheelchair and has struggled to find a viable solution ever since. 

Karen said, “They (HCRG) are still not happy that she meets the criteria for a wheelchair. 

“On the week where Josselin was leaving her school forever – which was a massive thing for her – I had a phone call from Wiltshire Council to say they had visited Josselin in school and deemed her wheelchair too unsafe to travel on transport any longer.  

“I did manage to get Josselin to school for most of her last day, but she did miss school that week as I was unable to take her due to her brother having hospital appointments. This was extremely upsetting. 

“I have made wheelchair services aware that they are making Josselin housebound but they really do not care. Josselin is completely reliant upon a wheelchair, she cannot walk or stand at all.” 

Karen has added that the family is fearful whether Josselin will be able to attend college if the situation is not resolved. 

HCRG Care Group have offered a £2,700 voucher towards a manual wheelchair, but the family say this would not be suitable for Josselin as it would be too heavy for her to propel. 

In comparison, a powered wheelchair costs in the region of £12,000.  

HCRG Care Group said, “We recognise how vital mobility support is for children and their families. Our wheelchair service operates in line with national NHS eligibility criteria, and where a child does not initially meet those criteria, we take a holistic approach to reassessment. 

“We have worked with Josselin and her family for many years and are doing all we can to provide support and access to equipment while keeping her, and the people around her, safe, with support from our specialists.”  

Meanwhile, Westbury Councillor Gordon King has written to the relevant authorities following Karen’s appeal and hopes to support the family. 

Pictured: Karen and Josselin