The mother of a severely disabled baby is devastated after one of the country’s leading children’s charities axed an outreach programme which she described as her "guardian angel".
Aimey Shears, 32, from Wallington, Sutton, has been helped by carers from The Children’s Trust, based in Tadworth, since 2012, as part of an outreach programme for nine families in Sutton, funded by Sutton Council and subsidised by charitable donations from the trust.
Mrs Shears’ two-year-old daughter Evelyn suffered a brain injury at birth and was diagnosed with cancer in both eyes aged two weeks.
The outreach service, which has been running for five years, provides the ex-teacher with respite and allows her vital time outside of the home, as well as a specialist team familiar with her daughter’s needs.
But the service will stop in its current form at the start of April after the trust, a leading charity for children with brain injury and multiple and complex disabilities for 30 years, decided not to renew the contract for its provision with Sutton Council.
The outreach programme helps Evelyn Shears, 2, who has a brain injury and cancer
Sutton Council said this week that it too would have liked the trust to continue its work and it has yet to find another organisation to step into the breach.
Mrs Shears said: "I’m not taking away what The Children’s Trust does for families, I just don’t understand how they can justify closing down such a valuable service?
"I value the work the trust do inside the trust house without question, I'm just gutted it seems to be the trust’s sole focus now.
"You’re shaken when something like disability is presented to you in life and you didn’t expect it.
"You’re thrown sideways and then we had people coming in and telling us they can help us and ‘your daughter isn’t weird’. People who have compassion and professionalism are unique.
"It’s like gold having a carer with that level of love and patience coming into your home and supporting you with however many hours you need to keep you going.
"I’m more-or-less isolated and when we have a carer and a nurse from The Children’s Trust, from a human being point of view, they give me freedom. It’s respite.
"They are guardian angels and I can’t praise them enough. They are heartbroken."
Mrs Shears said an employee at the trust told her the service costs the charity money, rather than making a profit, and if demand was to rise, would require the trust to hire agency staff.
In a statement Dalton Leong, chief executive of The Children’s Trust, said: "As a charity, we must use the donations we receive from the public to make the greatest difference to as many children and families as possible and there are now other organisations who are better placed to provide this service than us, so we took the decision not to re-tender for the contract.
"Sutton Council will continue to offer outreach to families while we will be able to redirect charitable funds to develop other services for children with brain injury and complex health needs."
He added: "Notice about the change was given to families in November 2013 and the transfer of services will take place at the beginning of April.
"We have been working very closely with Sutton Council, as it is of paramount importance to us to ensure a smooth transition for all children and families involved.
"Sutton Council and The Children’s Trust are providing advice and guidance to the families who are affected by the changes and we welcome any questions from them."
"We did not undertake a consultation because the service will continue to be provided by Sutton Council."
Despite repeated requests the trust has refused to reveal how much the service costs to run, what it provides, how many carers are employed and whether those carers will transfer to the alternative providers.
It also refused to reveal whether outreach programmes are being axed in other areas. It is also unclear whether the move has been forced on the trust by a drop in income or whether it represents a shift in its strategy.
Evelyn Shears with her mother Aimey Shears
A Sutton Council spokesman said: "We were happy with the service The Children’s Trust provided. We would have been more than happy with them continuing to do it.
"We are in a transitional process to find alternative providers."
Top Gear presenter Richard Hammond, who has been a vice president of the charity for five years, paid a visit to the charity recently to film segments for an appeal due to be broadcast on the BBC next month, focusing on the work The Children’s Trust does and the need for donations.