A severely disabled three-year old has developed spinal issues because Hertfordshire health and social care services refused to fund the only seat suitable for her.
Florence Freeman from Hertford has severe Cerebral Palsy so she can’t walk, sit up or support her own head. Her muscles spasm uncontrollably and she has up to three seizures each day.
Hertfordshire Clinical Commissioning Group (CCG) provided Florence with the seat she needed aged one, but refused to fund a replacement when she grew out of it.
Michelle said: “Eventually they told me a change in policy meant they only routinely fund functional seating, rather than those used for comfort. But health professionals involved in Florence’s care agreed no other seating system kept her head up and spine straight.
“It breaks my heart, Florence has spent the past eight months slumped on a sofa being propped up with pillows or laying on the floor on a duvet like a dog.”
In the end health professionals recommended Michelle contact Newlife the Charity for Disabled Children – who recognised the risk of lasting damage to Florence and urgently provided the £820 seat.
“I’m outraged with the CCG, those eight months have proved catastrophic for Florence. She was seen by health professionals at great Ormond Street Hospital ten months ago who had no concerns. She had an X-ray a few weeks ago which now shows significant deterioration in her spine – a direct result of not having the right equipment,” said Michelle.
“Now Florence faces more tests and potentially months in a back brace after seeing yet more specialists – which will costs the NHS far more than if they had provided the seat in the first place.
“This seat she needed cost a fraction of the one the NHS wanted her to have, but this didn’t fit their criteria. Disabled children don’t always fit into neat little boxes. The system is broken.”
Newlife’s Senior Manager for Care Services, Carrick Brown, said: “It’s vital that children like Florence get the right piece of equipment at the right time. It’s not enough to provide a standard piece of equipment as it needs to be specific to an individual child’s needs.
“And, as is the case here, not having the right equipment has resulted in her condition worsening, putting further pressure on an already overstretched NHS.
“Although Florence is no longer at risk of further deterioration, there’s another 12 children in Hertfordshire suffering because they don’t have the specialist equipment they need. We need to raise £18,562 to help them all – which is why your support really matters. Text NEWL18 £10 to 70070 or donate online at www.newlifecharity.co.uk/donate.