A ‘home from home’ for disabled children is to be axed as public purse strings are tightened.
Mothers have campaigned tirelessly to persuade health bosses the Cherries, in Summersdale, is a vital support.
But Sussex Community NHS Trust (SCT) which runs the service said the centre will close by March 2014 and ‘transition plans’ for the children are ongoing.
Jessica Heatley, from Oving, has been fighting to raise the profile of the parents’ plight.
Her daughter, Danielle, loves her visits to the Cherries.
“It’s all over,” said Jessica.
“They are just making out they’ve spent loads of time with us and we all have something great to go to – which could not be further from the truth.
“During the consultation SCT were meant to come and offer us an alternative.
“But they aren’t suitable – Cissbury Lodge in Worthing is too far for Danielle to travel.”
Jessica now has to pay her mother to look after Danielle, but will only receive respite for a few nights a month.
The children at the Cherries have complex health needs and need care around-the-clock.
Emma Taylor, from Hunston, said she doesn’t know where to turn next.
“I’ve got no family in this country,” said Emma.
“I haven’t got any overnight help, or a personal budget for care.”
“Everything Megan has relied on has been taken away.
“It is not fair on her. Her face drops if we don’t go to the Cherries – the staff are like family. She needs to learn how to socialise and at the Cherries she can be more independent. It is not just about giving us a break. But I’m one of the lucky ones.”
Megan, who is 14, is now entitled to a 14 nights a year at Arundel’s Chestnut Tree House which provides some supportive care
“If we just sat back – what would they have done then?”
Ginette Jones, a single mum from Rose Green, said her daughter Olivia has received respite at the Cherries since she was two.
“I’m devastated,” she said.
“We have been left with absolutely nothing. We haven’t had ongoing support.
“Our last parents meeting was in June.
“I was told my child could go to Chestnut Tree House, but she’s not ill enough to go there and Cissbury Lodge isn’t appropriate.
“I feel its just me and my daughter now.
“I don’t know how I’m going to manage.
“I wish now I had never had respite, because then I wouldn’t know what we will be missing.”
As the Observer went to press, one mother who has two children with complex needs had not yet had a one-to-one talk with the SCT.
‘A deeper understanding of needs’
The Cherries has been under threat of closure for more than a year after it was considered the service was not ‘sustainable’.
West Sussex County Council, which plays a key role in the local health service, set up a task force group and ran a consultation period to discuss the needs of the parents and consider alternative provision.
A report by three West Sussex clinical commissioning groups said the service ‘did not meet the ‘changing needs of families’ and said fewer children demanded the service.
The consultation period has now finished and West Sussex County Council’s health and adult social care select committee is set to meet today to agree to the recommendations – after the letters were sent to parents and carers telling them it will close.
Transition for children
Dr Katie Armstrong, clinical chief officer at NHS Coastal West Sussex CCG said she was aware this had been ‘a difficult time’ for the families of children affected.
“The honest and in-depth discussions that have taken place have been invaluable and have enabled commissioners to develop a far deeper understanding of the needs of individual families now and for the future,” said Dr Armstrong.
“The CCGs have reviewed the findings of the consultation and have agreed that the Cherries will close.
“A timetable for the closure will be agreed with the provider, Sussex Community NHS Trust, to ensure a smooth and co-ordinated transition for children to other services.
“Transition plans for all children currently using the Cherries will be developed in partnership with families.
“The one-to-one support offered to affected families during the consultation will be continued throughout the transition process.
“Residential overnight short breaks will continue to be available for all children who are eligible for them. Overnight short breaks services for children with complex health needs and disabilities will be commissioned from Cissbury Lodge and Chestnut Tree House.”
Dr Armstrong said the NHS at home model of care will also be implemented ‘as fully as possible’.