MUM Lucy Chillery-Watson says she had to Google how to do physiotherapy on her severely disabled daughter after the NHS stopped her regular exercise sessions.
Little Carmela Chillery-Watson, five, from Market Lavington, near Devizes, suffers from a rare form of the muscle wasting disease muscular dystrophy.
Her parents were horrified when Virgin Care, who took over the NHS contract last year, claimed they were too short-staffed and did not have the finances to provide the amount of physiotherapy previously provided.
Now the family has launched a fundraising campaign to pay for private treatment.
Mrs Chillery-Watson said: "I have been emailing and calling Virgin Care constantly for a year about regular physio as Carmela requires daily mobility and stretching exercises as her disease progresses and causes joint contractures, pain and discomfort but I get back the same response, not enough resources or funding.
"They can only offer physio every four to six months. But with a progressive disease this can have a huge effect on a child's body.
"We had to Crowdfund for a home gym so I could do the exercises myself with Carmela to save future costs, but I am no professional and feel this is unfair on myself and Carmela having to do this when she is entitled to professional regular care.
"I was worried I was not doing the physio right and had to Google for advice.
"But also it's another added stress whereas having a regular appointment to go to would benefit her so much more just to check I'm doing everything right and to observe any changes in her progression."
But she also praised staff from Virgin Care. She said: "When you do see them they are all lovely and very caring. It is not their fault. It is the system."
Virgin Care denied a lack of finance was a factor. A Virgin Care spokesperson said: “While there are some vacancies in our physio team locally, we still meet the needs of our patients and ensure that the care we provide meets the care plan put in place to help them. We are unable to talk about individual patients because of confidentiality, but we assess their needs on an ongoing basis to ensure we are providing an appropriate level of care.
“The NHS’ Wiltshire Clinical Commissioning Group have asked us to provide an integrated therapy service for children and young people in Wiltshire and our key aim is to ensure those who require our support have a single combined care plan that identifies their needs and any therapeutic objectives. Their care is then delivered by a team that includes physiotherapists, occupational therapists and assistants.”
Mrs Chillery-Watson and her husband Darren have also had to battle to get Carmela special Lycra suits that support her muscles.
Mrs Chillery-Watson said: "I have to fight every four to five months to get Carmela a new supportive Lycra suit to reduce spine deformities.
"She picked up her third Lycra suit last week after putting an email in January that her current suit was digging in and causing a blister. She has been without one for two months and that has been the case with the last two suits."
A spokesman for Wiltshire CCG said: "The CCG is aware that Virgin Care has been dealing with some significant vacancy rates within their physio team, and we are working with them continuously to ensure that children are able to access the levels of care that they require.
“Funding for the patient’s Lycra suits has been approved, which means there is no need for further funding requests. The CCG will simply need to be informed when a new suit is being ordered."
Devizes firefighters held a car wash on Saturday and raised £720 which will be split between Carmela's Therapy Fund and the Firefighters Charity.
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