UK people. Fight for your right to get treatment.

[cave76]

(I realize that not everyone can do this but one wheelchair-bound woman did. I'll have to dig up more of her story, maybe some old emails I had from her. Maybe----  it was a long time ago. She helped found http://www.bada-uk.org/)

http://www.barnsleytoday.co.uk/ViewArticle2.aspx?sectionid=86&articleid=887872
[the link is dead]

Barnsley News [UK]

13 November 2004
Woman wins fight for aid to get treatment

A WOMAN has won her fight to receive £20,000 a year treatment on the NHS.

Wendy Fox, aged 37, has chronic Lyme disease, a serious bacterial infection
passed by the bites of infected ticks, which has attacked every part of her
body.
The mother-of-one from Wath-on-Dearne, who is paralysed from the waist down and
needs to use a wheelchair has been told that the NHS in Rotherham will now fund
drugs costing £20,000 a year, which she was previously denied.

Mrs Fox travelled to Downing Street recently to call for the Government to make
more money to make more resources available to fund better treatment for people
with Lyme disease. She says she is pleased to have won an appeal for funding
from Rotherham Primary Care Trust.

"I am of course thrilled by this decision and I am grateful for the PCT for
funding my treatment," said Mrs Fox. "But I am still desperately sad that I had
to battle so hard and at great expense. What is even more sad is that countless
people are in the same position."

Elsewhere in the world, she says the treatment is much better, and the
condition is recognised by the medical profession.

Mrs Fox said: "In the UK many GPs do not know what Lyme disease is, let alone
how to treat it. As there are already guidelines in place in the US then it is
my intention to produce a leaflet for all UK GPs that explains the issues
surrounding Lyme disease and the correct methods of treatment as per the
guidelines designed by US Lyme experts.

"I will be continuing to fight for the treatment of other sufferers while
receiving my own treatment on the NHS," she added.

Mrs Fox, a former zoo keeper, does not know how she came to get the disease.
Ticks can live on animals or in long grass. She was diagnosed ten years ago,
and says her health has steadily worsened.

13 November 2004

[Ricobord]

That's terrific that she got treatment, although it doesn't say for how long. I do hope that the treatment guidelines she was referring to were ILADS treatment guidelines.  The IDSA guidelines leave way too many people sick.

[jx28]

I'm afraid I don't know how her sight is but, if I call her again & feel it's appropriate, I can ask how she's doing generally. She's such a lovely lady.

Hi Jackie - I am indeed still here. I shall send you a PM soon. Hope you're keeping well :)

[cave76]

I'm glad to hear that Wendy is still active. Do you know if her sight is better? She probably doesn't talk much about herself, but just wondering.

[JackieCalifornia]

I was just wondering a bit ago about how you are doing -- treatment proceeding?  Still here?  Update requested!  

Hope you're doing well.

J.

[jx28]

Thanks for posting.

I've actually consulted Wendy on a couple of occasions in her capacity as Chair of BADA-UK. She is incredibly knowledgeable, and generous with her time.

I encourage UK LD sufferers to consult her organisation if you have questions.