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'Postcode lottery' claim over disabled children.

Byline: By Emma Brady Health Correspondent

Disabled children in the Midlands face a "postcode lottery" for funds for vital equipment, according to a new report.

Staffordshire-based charity BDF Newlife, which offers financial help to families with sick or disabled children, discovered primary care trust budgets for wheelchairs or monitors ranged from nil to pounds 187,000.

Data received under the Freedom of Information Act in 2005/06, before the reorganisation of NHS trusts, showed Wyre Forest PCT was one of four English trusts that spent nothing on specialist equipment.

South Western Staffordshire PCT confirmed it budgeted only pounds 1,000 for such grants, making it the third worst behind Harlow, Essex, and Mendip, Somerset, which spent pounds 504 and pounds 547.

But the three Sandwell PCTs - Wednesbury and West Bromwich, Rowley Regis and Tipton, and Old-bury and Smethwick - had a combined budget of pounds 187,169.

Fourteen of the region's 26 health trusts gave information. They had a total of pounds 406,892 - pounds 29,063 per PCT, below the national average of pounds 45,613.

Five of the ten Midland local authorities had a combined budget of pounds 206,670 - pounds 41,134 on average, below the pounds 58,777 nationally.

Last night, a spokeswoman for Worcestershire PCT, which includes Wyre Forest, said basic equipment such as wheelchairs and ventilators "are always available and budgeted for".

She added: "Our response we had not spent any money on specialist care or equipment in 2005/06 was because we'd had no requests.

"If requests had been made they would have been logged, and we would have responded accordingly.

"The reply was taken out of context, and as far as I'm aware the charity never sought a fuller response from us."

BDF Newlife's investigation discovered that on average pounds 30.42 was made available to each disabled or terminally ill child, with pounds 19.73 coming from PCT and pounds 10.69 from local authority budgets.

It claims that each of the 770,000 disabled children in Britain will need an average of pounds 20,000, as wheelchairs can cost between pounds 3,000 and pounds 16,000, specialist beds come in at about pounds 2,500 and adapting car seats can cost approximately pounds 1,500.

Sheila Brown, the charity's co-founder and chief executive, said: "We have for the first time established legal opinion that confirms that statutory services should be providing this equipment based on a child's needs.

"Many of the children who have been forced to go without essential equipment may be able to take legal action against the statutory authorities that failed them. "These are children who have not received timely assessments, who have been victims of interdepartmental funding squabbles, who have been refused because of 'blanket' policies to deny certain types of equipment.

"We don't think these children should have to face a lengthy wait, or be told they can't have the specialist equipment that would have a huge impact on their quality of life."

For most ten-year-olds playing in the park, riding bikes or larking about are taken for granted.

Even more so is an ability to read and write.

But Celia Beresford admits it breaks her heart as she describes getting help for her son Stephen as "a daily struggle."

The ten-year-old (pictured above with Celia) was diagnosed with rare disorder Soto's Syndrome, where one of the growth-control genes is missing, as a baby. He also suffers from autism, epilepsy, learning difficulties and can barely walk.

As his growth is not being controlled properly, Stephen now has the body of a 13-year-old but not the mobility.

Ms Beresford, who lives in Northfield, Birmingham, continues to be astounded at the lack of help and information for families with disabled or seriously ill children.

The 46-year-old said: "I'm only 4ft 11in and Stephen is about eight-and-half-stone now and pushing his chair is very hard work. I can't take him out in the day when my husband is at work, so we're both house-bound. We're trying to get grants to buy a motorised wheelchair, which could cost pounds 1,000, and an epilepsy monitor - as he has a lot of seizures at night - which would cost pounds 300.

"That might not sound like a lot but these aren't luxuries, this is equipment he needs to aid his day-to-day progress.

"There's no real information about where to go for help."



NP260407Autis-2 Picture, NEIL PUGH
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Publication:The Birmingham Post (England)
Date:Apr 27, 2007
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