The Herald speaks to Linda Fenn, bed ridden with pain as she suffers from a debilitating kidney disease -- MSK or Medullary sponge kidney. Linda has been battling for years to get the right medical pain relief to manage her condition.
A health board has come under fire from one of its own members for denying pain medication to a 33kg woman with a life-threatening kidney disease.
The Heraldyesterday exposed the plight of bedridden 50-year-old Westport woman Linda Fenn, after she begged the West Coast District Health Boardfor help, fearing she would die.
Today, board officials continued to avoid questions about the case.
Staff refused to provide contact details for chairwoman Jenny Black and other board members, despite their positions as public officers.
When the Herald called Black directly, she said she did not know the case personally and did not want to comment because it was an operational issue.
She said to call her was "intrusive" and "inappropriate".
Following Black's refusal, the Herald tried to contact other board members for comment about Fenn's situation.
Board member Peter Neame today said he was made aware of the situation at the weekend but otherwise had no knowledge of the case.
"But I've said I'm going to look into it, to ask what's going on," he said. "That's not the way for any health board to treat a patient."
Michelle Lomax, also on the board, said she couldn't comment as she had a conflict of interest - she had been working on the case in her job at the local MP's office as well.
"But it's a horrible situation it really is. I've been with her when she's been deeply distressed and it's just awful. I would love to see the situation resolved," she said.
It was a matter for clinicians to sort out, Lomax said.
Linda Fenn is bedridden with pain as she suffers from a debilitating kidney disease, MSK or Medullary sponge kidney. Photo / Brett Phibbs
Fenn, who suffers from incurable medullary sponge kidney and nephrocalcinosis, has been locked in a bitter battle with the board over access to pain medication for more than 10 years.
She says the only drug that helps her with the pain of passing regular kidney stones is the opioid pethidine.
Doctors, worried it will cause her harm, have refused to prescribe it for her and removed it from her local health centre at Buller. Instead she manages with anti-anxiety drugs and paracetamol.
Fenn says part of the issue is the health workers previously accused her of being a drug seeker, which a pain specialist has said is not true. She's also struggled with frequent turnover of staff in Westport, which is difficult with her complex condition.
"It takes a year of battling and battling and battling for them to get to know you and understand it," Fenn said. "And just as they start releasing and you prove that you're not drug seeking, they leave and you've got to start all over again."
Staff at Buller Hospital have previously been subject to criticism from the Health and Disability Commission for their attitude towards Linda Fenn. Photo / Brett Phibbs
A spokeswoman for Health Minister Jonathan Coleman said his office was aware of the case, but had not been contacted by Fenn. The minister was unable to comment on individual cases, the spokeswoman said.
A spokesman for the Privacy Commission said the hospital was allowed to disclose information only to the patient, if it chose to do so.
Green Party health spokeswoman Julie Anne Genter said it seemed officials were failing in their primary responsibility - to offer care and ease suffering.
"We expect that if something goes repeatedly wrong for a patient that there is some accountability, not to mention compassion," she said.
"All these people get paid to be responsible for ensuring patient rights are being respected, yet no one is now willing to be accountable."
What are medullary sponge kidney (MSK) and nephrocalcinosis?
• MSK is a birth defect where the kidney develops cysts, keeping urine from flowing freely through the tubes • Nephrocalcinosis is a disorder in which there is too much calcium deposited in the kidneys • A complication of this is frequent kidney stones • Scientists have not discovered a way to reverse or prevent medullary sponge kidney • Treatment focuses on pain management and prevention of infections.
