Carers desperate that respite could be taken away

Carers desperate that respite could be taken away

By nadia stone

DESPERATE carers who look after disabled children are devastated their only respite could be cruelly snatched away.

Tanya Cook cares for her 16-year-old son Jack who has a condition called tuberous sclerosis.

This means he has tumours in his brain, heart, eyes, and kidneys, as well as uncontrolled epilepsy and autism.

She has to help dress, shower and toilet him, as well as checking on him throughout the night because he frequently has seizures.

Herself unwell, the Quedgeley mum is “so exhausted” that she relies on The Meadows, in Dudbridge, Stroud, a home where Jack stays one night a week, to give her one night of rest each week.

But the centre, which is run by charity Action for Children, is at risk of closure and the news has put Tanya at breaking point.

“It’s just so wearing,” she said.

“It’s like having a big toddler. My brother had him for a day and asked me how I cope.

“The fact is we won’t be able to survive if we’re asked to care for our children 24/7 without a break.

“It will finish me.”

The home is at risk of closure because its usage figures are not high enough, but to the families who rely on it, the home is a lifeline.

What is making the situation worse is a decision by Gloucestershire County Council to take its “bulk” care package away from the home.

Tanya said: “I think the county council is looking at what they can afford rather than what we need.

“They want parents to use direct payments so we choose the respite for our children, but I know people who have the money in their account and cannot find anybody qualified to look after their children.”

Tanya is not alone. Caroline Easthope, 38, from Cam cares for her son Joshua, 16, who has quadriplegic cerebral palsy and severe epilepsy.

Caroline, a trainee nurse, said: “I’m run ragged already.

“I don’t have the time to go through the paperwork and organise the finances with Direct Payments.

“How would I find someone I trust enough? I get the impression that the council just thinks our children can go to the youth club for a few hours, but the children who go to The Meadows need the highest levels of care.”

Mark Kingston, group manager of children’s services at Action for Children, said: “Action for Children is contracted by Gloucestershire County Council to provide residential, short breaks and outreach services for disabled children, young people and families at The Meadows.

“We are disappointed at the Gloucestershire County Council proposal to end the block contract for The Meadows.”

Councillor Paul McLain, cabinet member for children and young people at the county council, said he wanted The Meadows to stay open.

He said he realised the facility was needed but some families, carers and children were choosing other services.

He said: “This is why we are proposing to change the way the council commissions residential short breaks by moving from a block contract, which commits the council to paying for a certain number of places however many children need it, to commissioning breaks based on the needs of individual children.”

He also believes the move would provide better value.

The move is currently out for consultation until March 7 and a final decision will be made after that date.