Family suffers as health costs hit bank balance

Veronica Carney, 51, of Ashby Close, has enlisted the help of Bexhill's MP, the chief executive of Rother District Council and several local charities but claims she is still being denied the financial help her daughter deserves.

Carrie Carney is a 25-year-old with the mental age of a young teenager. Unable to read or write, she suffers with a complex degenerative disease called neurofibromatosis - unique in East Sussex.

Among other symptoms, neurofibromatosis causes severe short-sightedness, benign tumours and scoliosis. "We are just waiting for the tumours to erupt," said Veronica. "Why do they help some people but not others? It's not right.

"We have been let down. As it stands at the moment Carrie could go totally blind and end up in a wheelchair and still be paying health costs. It's so frustrating.

"Carrie's condition is always worsening - so her health costs only increase. We think she should be exempt from her health care."

Though Carrie, who was first diagnosed at 11, gets some state help through disability benefits, other costs are met by the family. Specialist glasses with among the strongest lenses available cost at least 300 and Carrie's dental problems and regular trips to specialist doctors in London incur ongoing expenses.

Some homecare equipment, including an orthopedic bed to help Carrie sleep despite the steel rod inserted next to her spine, is also covered by the family, who continually beg grants from local charities.

Veronica claims the NHS Business Services Authority (BSA), will not cover full health costs for Carrie because she is not listed as a co-tenant in the home they share.

The technicality means the BSA do not recognise the limited rent and council tax payments Carrie makes - a crucial stumbling block to health cost exemption.

To make matters worse, Veronica was made redundant in 2008, when she suffered a mini-stroke which she says was caused by the stress of caring for Carrie.

"I can feel for many carers out there because it's a constant fight. People get the impression that if you're disabled there's lots of help and lots of money, but that's wrong."

A council spokesman said responsibility for joint tenancy lay with landlords AmicusHorizon.

The spokesman added: "Council officers were more than happy to get in touch with AmicusHorizon on the family's behalf to request the relevant forms for a joint tenancy application."

AmicusHorizon confirmed they were aware of Veronica's difficulties with the NHS BSA, and had sent out the application form.

Jon Kanareck, homes and communities director of AmicusHorizon, said the company's area housing manager had spoken with Veronica to check if the form had been received and if she needed help completing it.

Mr Kanareck added: "Mrs Carney is currently reviewing how her daughter's benefits will be affected if she becomes a joint tenant, and so has yet to complete the form. AmicusHorizon has arranged for a welfare benefits adviser to visit Mrs Carney week commencing July 5.

"They will discuss all aspects of benefits to help Mrs Carney reach the right decision on her tenancy."

The NHS BSA said it does not comment on individual cases, but Mark Dibble, their corporate secretary, said he would: "strongly encourage anyone who feels their application for help with health costs under the Low Income Scheme has been wrongly assessed to apply for a review."

To request a review, call 0845 850 1166, or go online at www.nhsbsa.nhs.uk/HelpWithHealthCosts.aspx