THE mum of a little boy battling an extremely rare condition fears life-changing services could be axed after a decision by health chiefs.
Four-year-old Adam Butterfield is one of only 200 people in the world with Emanuel Syndrome, a chromosome abnormality that affects every cell in his body.
Since he was just three months old, Adam has been helped by occupational therapy and paediatric speech and language therapy services provided by their local NHS Foundation Trust.
But Adam’s mum, Nicola McAllister, is worried that youngsters with the most severe conditions like her son will not be catered for if the services fall into the hands of private companies.
It is after health commissioners at NHS County Durham and Darlington decided to recommission child occupational therapy and speech services in December this year.
Nicola, from the Acre Rigg area of Peterlee, said: “I think it is disgraceful.
“I can not understand how they can withdraw a service for the most complex cases when they need them the most.
“It is almost going back to the dark ages where, if you had a severely disabled child, you kept them out of sight and did not do anything with them.
“It stinks. I can’t believe they would go ahead with this plan.”
Experts have told Nicola, 36, and Adam’s dad, John Butterfield, 40, that he could suffer from a string of health conditions including heart seizures, kidney failure, asphyxiation, and an inability to walk.
The occupational therapy services, currently provided by County Durham and Darlington NHS Foundation Trust, have provided Adam with specialist equipment and adapted their home to make life easier for him.
He has also used speech therapy and is set to be provided with the therapy weekly when he starts school in September.
The hospital trust says it will bid to keep providing the services when they go out to tender.
Nicola added: “They have been really helpful right since Adam was born. We will have to wait and see what happens.”
A spokesman for County Durham and Darlington NHS Foundation Trust said: “NHS County Durham and Darlington have advised us of their intention to recommission Children’s Occupational Therapy and Children’s Speech and Language Therapy, and we met initially with our staff yesterday to keep them informed.
“This is a vital service for many families, and our staff work hard to see children as quickly as possible and provide good quality care that meets their needs.
“We plan to tender for the service as part of this process, and hope to keep it within the NHS trust.”
A spokesman for NHS County Durham and Darlington added: “It is a reprocurement exercise. The whole rationale is to ensure that the services for young people are of the highest quality and that it’s equitable.”