My battle to make the NHS pay out for my treatment

A WOMAN claims she could end up forking out £50,000 on treatment for a rare disease if the NHS refuses to fund it.

Ria Heslop, 43, has been battling NHS North East Essex for more than two years, in an effort to get it to pay for medication she needs to treat lyme disease.

Mrs Heslop contracted the neurological condition after being bitten by a tick in 1999, but was not diagnosed until 2006.

She visited her GP and has seen several specialists over the years, reporting flu-like symptoms and migraines.

Mrs Heslop of Fordham Heath, Colchester, said: “I was showing neurological symptoms. My muscles were jumping and I just couldn’t get out of bed.

“I thought I was dying. The doctor sent me to a multiple sclerosis specialist and after that, it was one specialist after another.”

In 2006, Mrs Heslop visited a diagnostic specialist in the USA, who finally diagnose neurological Lyme Disease.

Back home, Colchester Primary Care Trust, which at that stage was responsible for her care, initially funded her treatment, but then withdrew it.

Since then, Mrs Heslop has been fighting to to get her treatment and in the meantime is paying for it herself.

She estimates the cost could be as much as £50,000 but she and husband, Dennis, say they would be happy if NHS North East Essex paid for the drugs she needs to treat the condition.

She said: “It has been very difficult and we have been struggling to afford the trips to the USA.

“It’s so sad, because when I was working, I was paying money into the NHS. You never think that it won’t be there to help you.

“I want my life back more than anything, but I think it’s unfair that I have to fight the NHS, as well as the disease.”

TRUST SAYS IT WANTS TO HELP

Mike Cable, assistant director of corporate services for NHS North East Essex, declined to comment on the case in detail.

He said: “This is a complex issue which is at a delicate stage. We are in continuing contact with Mrs Heslop in an effort to resolve the situation. However, we do need Mrs Heslop’s help to enable us to help her.”

He added the trust had asked “on a number of occasions” for diagnosis and treatment data from the USA.

“Without this, we are not allowed, for clinical safety and legal reasons, to pay for the treatment she is requesting,” he added.

“Mrs Heslop has so far declined to provide us with this information.

“We are keen and willing to offer Mrs Heslop every assistance possible, but we can’t do so unless she either agrees to release the information from the USA or agrees to see a consultant in the UK.”

However, Mrs Heslop showed the Gazette letters which says she sent the trust, giving them permission to view her medical records.

She said: “We have sent them letters repeatedly confirming my diagnosis, including letters from my consultant.

“They keep saying they want results of my blood tests but they have had them numerous times.”

LYME DISEASE FACTS

• Lyme disease is caused by bacteria transmitted to humans via the bite of an infected tick
• Seven to ten days after an infected tick’s bite, the first stage of Lyme disease begins with flu-like symptoms such as fever, chills, swollen lymph nodes, headaches, fatigue, muscle aches and joint pain
• Neurological complications most often occur in the second stage of Lyme disease
• These include numbness, pain, weakness, visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headaches
• Weeks, months, or years after a tick bite, other problems, such as difficulty with concentration, irritability, memory and sleep disorders and nerve damage can occur.

Back

© Copyright 2001-2012 Newsquest Media Group

http://www.gazette-news.co.uk