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Last Updated: Thursday, 30 March 2006, 09:40 GMT 10:40 UK
Give us a break, say carer couple
John and James Pearson
The Pearsons are seeking local respite care for their son
Hundreds of thousands of Britons are caring for sick relatives, and desperately in need of support, advice, health care - and a break.

The BBC's Stephen Fottrell travelled to Preston to meet John and Jean Pearson, whose son, James, is severely disabled. He currently receives respite care in Lytham which is 12 miles away from where he lives.

But his parents think that is too far away and want the service offered in their own town but not in their own home.

If you are a carer with a story to tell - or if you have any other story ideas - send them to the BBC using the form at the bottom of the page.


A quiet Saturday night in is something many would take for granted.

But when you are parents to a severely disabled adult son, it is a something of a rare pleasure.

John Pearson, 59, and his wife Jean, 56, care for their son James who suffers from a condition called Ring Chromosome 22 Depletion, which affects around 200 people in the UK.

It is a full time occupation for the couple, who divide it between the two of them. They also both work part-time.

Jean Pearson
We are a very undervalued resource and are committed to our roles, but carers aren't super human
Jean Pearson
James has no speech or verbal communication, has autistic behaviours, poor motor skills, and is unable to walk unaided and occasionally has to use a wheelchair.

In addition he is doubly incontinent, has only one functioning kidney, suffers from epilepsy, and can present very challenging behaviour which can harm both himself and others.

Mr Pearson says he had a bite mark on his arm recently to prove this.

In addition the couple help care for Mrs Pearson's mother, who lives nearby and suffers from Alzheimer's disease.

Put simply, they want some time to themselves occasionally in the comfort of their own home.

External respite care is the only way for them to do that - in other words they want a local building or centre where James can go for a night - "to give us a bit of breather," they said.

But the nearest centre that can provide the institutional respite care that James needs is in Lytham, Lancashire, which is about 12 miles away.

The couple are not happy with the arrangement, and are particularly worried that if anything were to happen to James there, they would not be close by.

'Forced out'

Lancashire County Council Social Services say they acknowledge that "accessing residential respite care is an issue in Preston".

John and James Pearson
We don't want to be forced out. Having time to ourselves doesn't mean we have to go away all the time
John Pearson
But, according to a spokeswoman, they are "currently working on proposals to increase the availability of more local generic respite services for all adults with learning disabilities".

As an alternative they are offering the Pearsons in-house respite care; they say that soon they will be able to assign a carer for 25 hours a week to provide one-on-one care for James in his own home.

But Mr Pearson is not happy with that arrangement.

"I don't want to have to leave my house just because a carer is coming in," he said

"What we want is to be able to have a few nights off in our own home. We want to be able to enjoy our home on our nights off from caring for James.

Carers don't get enough attention generally. This is a problem that is only just beginning to be understood
Imelda Redmond, Carers UK
"We don't want to be forced out. Having time to ourselves doesn't mean we have to go away all the time.

"If there is a carer coming into our house for 25 hours a week, it means we have to leave and go somewhere during that time.

"We are a very undervalued resource and are committed to our roles, but carers aren't super human - we need breaks that are appropriate to the level of care we are providing - not what just what suits social services' budgets," Mrs Pearson adds.

"It would be nice to be appreciated."

Wider problem

The couple feel that the compromise proposal "has been foisted upon us" and it's not the solution to their problem.

It is a difficulty that many carers face, according to Imelda Redmond, chief executive of Carers UK.

"Breaks are critical for carers," she said. "The difficulty is that it is all about individual needs and services provided need to respond to those individual needs.

"We find that social services don't really listen to what families want, focusing more on what they can offer them.

"Carers don't get enough attention generally. This is a problem that is only just beginning to be understood," she said.


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