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My battle to make the NHS pay out for my treatment (From Gazette)
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Original Comment
The UK charity Lyme Disease Action is very aware that there are many people throughout the UK in a similar situation to Mrs Heslop. Over the past two years we have been contacted by over 700 people all asking very similar, basic questions about the provision, or lack of it, for Lyme disease cases in the UK. This number is only the tip of the iceberg of people chasing answers to their questions about Lyme. We suspect many thousands of people in the UK may be in the same boat. We hear from people who have a range of very debilitating symptoms, often they do remember a tick bite incident, but the medical response to this situation in many parts of the country appears ill-prepared to accurately advise such patients. When people cannot find any answers they are driven into the arms of private providers in order to obtain diagnosis and treatment. Desperate patients are then in the position of having to pay to have their infection treated. Something that started as a simple infection turns into an expensive health nightmare.
This charity has asked the Department of Health to put into place national Clinical Guidelines for doctors, to enable GPs to recognise and treat Lyme disease without delay. We have asked that this be treated as a matter of urgency. Indeed, we placed a motion in Parliament and a Number Ten petition asking for these Guidelines to be brought into being. Over 2000 signatures resulted when the petition closed and this number of signatures would normally result in a government response being given. We are still awaiting a response from Number 10 several weeks later which is very unusual. The problem is not just going to go away and must be tackled by government as a matter of urgency. Many thanks to Ria Heslop and the Gazette for highlighting this ever-growing problem. We do hope Ria will succeed in getting the treatment she needs.
Stephanie Woodcock
Lyme Disease Action
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My battle to make the NHS pay out for my treatment
1:18pm Wednesday 6th May 2009
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.
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