A mother who uses a Northampton respite centre facing closure hopes to pressure bodies to reinstate the invaluable service it provides to her vulnerable 10-year-old son.
The contract, which ends in July, to run the John Greenwood Shipman Centre was put up for tender in March and parents were told by Northamptonshire Healthcare NHS Foundation Trust (NHFT) that it didn't see a way it could safely look after the children within the restructured financial model.
Northamptonshire County Council said it will continue to provide £2.1m per year but co-funders Nene and Corby Clinical Commissioning Groups (CCGs) have reduced its share of funding in 2018/19.
Jo Cousins' son Seth suffered oxygen deprivation during birth, which resulted in extensive brain damage. Now aged ten, he requires one-to-one care, is severely visually impaired and has epilepsy.
Seth and Jo receive respite at the John Greenwood Shipman Centre two nights a month as part of the residential short breaks contract that runs out in July.
After being "devastated" by the news the contract was coming to an end, Jo is hoping for a new bidder to come in or for the Corby and Nene Clinical Commissioning Group (CCG) to reinstate its part of the funding to the invaluable service.
“What I’m hoping for is that we can put pressure on the CCG so that the contract changes," she said.
“We need the contract changed and the service model reinstated because it was working.”
She is worried that an underfunded respite centre could lead to nurses and carers being overworked and potentially unable to provide the best possible care to the children.
“Our children are so vulnerable so when they’re not in our care we need to know that the people looking after them are 100 per cent committed," said Jo.
“The people at JGS are amazing. It’s a value to him [Seth] personally because they give everything to him.”
“When I pick him up he’s laughing, he’s having such a wonderful time there.”
She added: "My husband and I (as many families with a child with special needs) care for our son alone. We love our son but caring for him is exhausting and stressful.
"Our two nights a month when we can leave our son in the care of a fantastic team where, not only do we get a break but our son also gets to spend time away from us being sociable with other children, is invaluable.
"We can only do it because we trust that all of his needs will be met: emotional, physical and health."
If the JGS disappears altogether, then Jo and her family will not be left with any alternatives.
The Cousins had previously used Family Link, a short break service which sees children left with other families rather than at a centre with nurses, but Seth has trouble sleeping.
He therefore needs to be somewhere with all-night staff, something Family Link couldn't offer.
The other option for the Cousins would be to move away from Northamptonshire.
A spokesperson for Nene and Corby CCGs said: "The current contract to provide residential and non-residential short breaks is due to finish at the end of July and a procurement exercise is on-going, which is being led by Northamptonshire County Council.
"A period of engagement was undertaken last year with families accessing the services which revealed not all children, especially children with very complex needs, have been able to access the services in the same way. As a result, a new model was developed for residential and non-residential breaks which aimed to address these needs and in an arena of financial challenges, made more efficient use of resources and staffing. This is currently out for tender.
"Whilst decisions about residential short breaks are made by the Local Authority as Lead Commissioner for social care, Nene and Corby CCGs have a responsibility for ensuring that the health element of the short breaks services will be met. This includes the training of staff to ensure they can meet the specific health needs of a child in their care. We are committed to continue funding this element of the service."