EDINBURGH is facing a fresh healthcare timebomb as medical advances mean severely-disabled children begin to outlive their parents.
A growing number of people who have looked after children all their lives are now struggling to cope and are fearful about what will happen when they die.
An estimated 6000 elderly people in Edinburgh act as carers, although the proportion looking
after disabled sons and daughters is unknown.
Maggie Macleod, manager of the Edinburgh Development Group (EDG), which supports carers, said: "An increasing number of people with learning difficulties are living into old age and for many of them their main carer is an older person.
"People in their late 70s, 80s and even 90s are carrying a big caring role. For a parent with a son or daughter with a learning difficulty it is a lifetime of caring.
"Some older carers are deeply worried about getting ill because they do not think that there is good back up there to help in an emergency. And caring affects their own health.
"Older carers need more help in the form of respite care but believe that this is becoming harder to get.
"Caring puts huge pressures on families and at a time when parents should have more time together, they find it very difficult to do what any couple might want to do – have a weekend away."
EDG believes a number of measures need to be put in place to support elderly carers.
It wants them to be able to have regular breaks from caring, to be given assurances on where their children will live after they die, and to speak to designated representatives who they know will speak up for their children's rights.
This has been backed by Councillor Lesley Hinds, the city's Labour health spokeswoman, who said: "More people are getting older and still having to look after children with learning disabilities. The real concern is there are 6000 elderly carers out there, but we don't know the size of the problem.
"These people need reassurance. They are worried about what will happen to their children when they pass on."
Councillor Paul Edie, the city's health and social care leader, said it was a "key priority" for the city council. He said: "Services for people with learning disabilities have historically been under funded and this is something we are working hard to address.
"In the most recent budget, an additional £1.3 million per year was allocated to support adults with learning disabilities in recognition of those on waiting lists."
'What happens to Margaret when I've gone?'MARGARET MOTION, 67, has been embroiled in a two-year battle with the council to get 24-hour care for her daughter, also called Margaret.
After 42 years as her sole carer, Margaret snr is struggling to keep up with the physical and emotional challenges of the role.
She recently secured a council flat for her daughter but needs someone to stay with her. The 42-year-old, had meningitis as a child and was left with epilepsy, hydrocephalus and a severe learning disability.
Her mother says the council is refusing to provide a carer because she will not put her daughter into shared accommodation, but she believes Margaret is better on her own.
Mrs Motion, of West Adam Street, said: "The council has told me there are no funds for single tenancy.
"At the moment she spends some of her time in her own flat and some of the time in my home.
But what about the rest of the time? What happens when I've gone."
She added: "Margaret wanted her independence. That's a human right, so why shouldn't she have it?"
