Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS Australia (SA) Inc
 
 
Facebook
 
ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
Suite 506,
North Terrace House,
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Become a Member
PDF Application Form (PDF, 242KB)
Why become a member?
 

Minister Hames denies home help for bed-ridden Theda

Thursday 3 March 2011

Theda Myint
This intravenous drip helps Theda Myint battle the
migraines which are part of her daily battle
as a Chronic Fatigue Syndrome sufferer.
Photo: Chalpat Sonti

From Australian newspaper WA Today:

 

Minister Hames denies home help for bed-ridden Theda

Chalpat Sonti
March 1, 2011 - 10:33AM

It's hard to know what causes more suffering for Theda Myint – the excruciating migraines caused by her decade-long battle with a crippling illness, or the fact that a simple method that can ease her pain is being denied by authorities.

Largely bedridden for the past 10 years due to the effects of myalgic encephalomyelitis, or ME – better known as chronic fatigue syndrome – Ms Myint and her family have battled the medical establishment, bureaucrats and politicians firstly to get her condition recognised, then to try to get treatment.

WAtoday.com.au chronicled the former actress and journalism student's battle in a series of stories last year. That battle has seen her plumb to the depths of contemplating suicide.

One of the most crippling side-effects for the 34-year-old – apart from an extremely low tolerance of light and noise – is chronic migraine headaches.

Her GP, Hugh Derham, has taken to administering an intravenous saline solution comprising magnesium and a combination of other minerals, which has led to Ms Myint being able to walk around her Willetton home for the first time in years.

However, the cost of each four-hour treatment to the family, about $350 with just $75 refundable through Medicare, and the need to have it on a weekly basis, has forced the family to supplement what home treatments they can afford with regular trips to the emergency department at Fremantle Hospital.

Dr Derham, who is also the patron of the WA ME/CFS Society, said taking Ms Myint to hospital for the IV was like taking three steps forward and two-and-a-half back due to the crippling impact the exertion of the visits had on her frail health.

Ms Myint's supporters and family – who survive on pensions paid to Ms Myint and her mother Carol Adams, 68 – have asked for the hospital treatment to be made available in their home, an option they say that, as well as being better for Ms Myint, is also much cheaper for the taxpayer than taking her to hospital.

"She really needs to have it at home, where she doesn't have the stress of travelling to hospital, dealing with the noise and the lights and all those things," Dr Derham said.

"We've asked (in-home health service provider) Silverchain if they can provide it, but they say it's not in their normal guidelines so they're not going to do it. They say it's (Health Minister Kim Hames') decision to make."

However, in-home treatment has repeatedly been rejected by Dr Hames, who last week told the family that "I am unable to direct any doctor to provide care outside what they consider to be standard medical practice".

"Theda is always able to access emergency medical care for migraine via the Emergency Department. However, I do advocate the value of consulting your GP before allowing the matter to escalate to the point of hospital admission," he said.

Ms Adams said Dr Hames appeared to be confused between treatment for the side-effects of ME/CFS and the disease itself.

"Why can't he allow this to be done at home. It's cruel to take Theda in her condition to hospital every week and have to expose her to light and noise," she said.

WAtoday.com.au recently visited Ms Myint at home during one of her rare periods of activity.

She said going to hospital in her present condition was almost unbearable, due to the stress of travelling and the noise in hospital.

"I just don't understand why (Dr Hames) is not willing to do it," she said.

"It would help me so much... I think (it would) end up saving the government money, it's costing so much. I don't want to be sick and stuck on lots of meds, so it's terrible that I can't get (treatment) at home.

"It is a simple request (that) I desperately need to get done. I'd like to ask (Dr Hames) what his reasons are because it's really affecting my life."

Ms Adams said that once Ms Myint was better, she would be able to go to see specialists at the hospital's pain clinic.

"They (health authorities) keep expecting her to attend four appointments at a pain clinic before they'll even look at her, yet they know it's impossible for her to do that in her condition," she said.

"No one seems willing to look at this simple treatment proven overseas. (Dr Hames) keeps saying it isn't proven but it has been. Then he says he's being advised by specialists, but on the other hand tells us that Fremantle Hospital does not have any specialists in the area.

"I really don't know what more to do. I'm just really scared of losing Theda. The main reason she's still here is she's terrified of killing herself."

In a response to questions from WAtoday.com.au, Dr Hames said he encouraged the Myint family, for whom he had "a great deal of sympathy", to use the "various health programs and services that have previously been offered to them by some of WA's excellent specialists in the public health system".

"The public cannot fund treatments that are not recommended by Australian specialists," he said. "The WA public health system provides treatment to those who need it in the most clinically appropriate way."

He did not respond to a question asking why the IV treatment that was already being administered at Fremantle Hospital could not be given to Ms Myint at home, or how the present situation was better value for taxpayers.

"I intend to continue dealing with (Ms Myint's family) privately to assist where possible with the care of their daughter," he said.

But Opposition health spokesman Roger Cook said the issue had turned into a "triumph of bureaucratic dogma over compassion".

Mr Cook drew parallels with Dr Hames' treatment of the late Claire Murray, who underwent a liver transplant operation in Singapore last year after the state government granted her family a $250,000 two-year interest-free loan.

She had earlier been rejected on medical grounds for a second liver transplant in Perth after the former heroin addict's first transplant failed due to her relapsing into drug abuse.

Dr Hames, who said then that while a precedent had been set it was a very narrow one that would rarely be repeated, overruled that decision.

Mr Cook said Dr Hames should step in again. "All it requires is for (Dr Hames) put down his pen, pick up the phone and sort this out," Mr Cook said.

"I can't understand why the (Health Department and Dr Hames) are being so stubborn about this. In the past for reasons he's described as humanitarian, which is now looking increasingly like political convenience, he's been quite happy to waive the rules.

"There's a very clear and present need for Theda to receive this IV treatment at home, maybe for a short period, so she can be well enough to go to the pain clinics."

Ms Myint said she had been overwhelmed by support from friends and wellwishers since her plight was made public byWAtoday.com.au last year.

"I'm just so blown away that people are supportive of me and so compassionate and caring," she said.

 

The above, including a video highlighting Theda's plight, originally appeared here.

Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.

 


 

blog comments powered by Disqus
Previous Previous Page