33kg Westport woman: 'If I was an animal ... there would be an uproar'

It's been five years since doctors took away the only drug that eases the pain of Linda Fenn's life-threatening kidney disease.

In that time the Westport woman has gone from "managing" to being bedridden.

Aged just 50, she needs a new hip. She's lost her teeth, and her independence, and her faith in the health system.

This month, her weight dropped to 33kg. Now, she's terrified she's going to die.

"My bones are sticking out. My bones are sticking out of my body so badly," she said.

"If I was an animal and I was found like this, there would be an uproar ... but I'm laying on a bed and no one cares, and no one is speaking up for me."

Fenn, a mother of three, has been locked in a bitter battle with authorities at the West Coast District Health Board over access to pain medication for more than 10 years.

She said their inability to deal with her condition has led to her current extreme ill-health - and forced her out of her home and into respite care.

Born with medullary sponge kidney and nephrocalcinosis (see sidebar below), Fenn frequently passes kidney stones which cause her acute pain.

Mostly, she manages at home with anti-anxiety medication and paracetamol, but if a stone is too large or painful, she goes to Buller Hospital for help. If a stone is stuck, she will be transferred to Greymouth by car.

While a stone is passing, Fenn can become extremely dehydrated because she can't hold down fluid. She can lose up to 2kg at once.

It's been five years since doctors took away the only drug that eases the pain of Linda Fenn's life-threatening kidney disease. Photo/Brett Phibbs

Previously, Fenn was able to "get around". But she said the continued lack of access to pethidine - the strong opiate she said is the only thing that helps her - has sent her body into meltdown.

"Anyone who's ever had a kidney stone will tell you it's the cruellest pain you'll experience. It's indescribable, the stones travelling down the tubes," she said.

"For those of us with my disease, our tubes are skinnier, so it takes even longer to pass a stone."

The constant stress on her body from the pain from both her kidneys and her eroded hip (unable to be fixed until she puts on weight) is what's caused her to become so skinny, she said.

"Just me getting out of my pyjamas, or something so simple as getting out of bed, I can't breathe because my heart is racing so fast because I'm in so much pain."

Documents seen by the Herald detail how doctors first became concerned about Fenn's use of pethidine in 2008. They were worried she was being affected by the drug - which can cause neurotoxicity - and wanted to limit her use.

Fenn strongly disagreed, saying other opiates such as morphine made her nauseous or unwell. She argued the doctors never tested for neurotoxicity, and therefore were acting on speculation alone.

Her arguments led to accusations of "drug seeking", she said, which made her extremely upset.

In an attempt to right the situation, the health board arranged for Fenn to see a pain specialist. He found no evidence of a pethidine addiction.

However, doctors in Buller remained "uncomfortable" with prescribing the drug. They said it didn't appear to help Fenn's pain at all. Amid ongoing tensions, pethidine was removed from Buller Hospital in 2012.

Desperate, Fenn complained to the Health and Disability Commissioner.

While it found errors on the health board's part - not writing or following pain management plans, and negative attitudes towards Fenn - it said the doctor's decisions not to administer a "potentially toxic" dose of pethidine was clinically appropriate.

In a bid to finalise a pain management plan for Fenn, the health board sent her to see a pain specialist in Nelson in 2014.

That doctor, Buzz Burrell, proposed she be allowed a small amount of pethidine at home for acute attacks.

When Burrell's plan was not followed, Fenn's HDC advocate spoke to him on the phone, and recorded it on Fenn's file: "He can see Linda is in pain. Cannot understand why other specialists can't see Linda is genuine in her need for medication."

Burrell would not speak about Fenn's case to the Herald this week, saying it was inappropriate to discuss a patient.

The West Coast District Health Board also declined to discuss Fenn's case, despite a privacy waiver. Its general manager, Philip Wheble, first said the board "prefers to discuss a patient's care with the patient themselves rather than through the media".

It then said it was inappropriate to discuss Fenn's case while a HDC investigation was ongoing. HDC would not respond to questions about its investigation.

Fenn's long-time advocate and friend Vicki Harmon said Fenn's treatment was "appalling".

She knew there had been times when Fenn and health staff had "become upset" with each other, but her friend was a good person and deserved help, she said.

"She's in chronic pain. She's lost in it. She has no quality of life. And they'll only give her panadol," she said.

"To be honest, she's very close to death. And she's going to die and no one is going to be held accountable."

Fenn said she thought it was a matter of stubbornness among the health board.

"I think it's doctors thinking if they give the treatment they took away, that's admitting they're wrong.

"But I don't understand how there's not one doctor who can't look at me and see their mum, see their daughter, see their friend, just see a human being, and say I want to help that person."

West Coast MP Damien O'Connor - who has been in contact with Fenn several times over the past 18 months - said her situation was "incredibly complex".

"In spite of efforts from multiple individuals and organisations it doesn't seem to have resolved the situation," he said.

His office had been involved in getting Fenn access to treatment in Christchurch, but it was difficult to do much more, he said.

He was reluctant to comment on whether doctors were making the right call.

"I'm no medical professional. In the end it's up to those professionals to make the best ethical and effective treatment judgments for her. We and many others have done our very best to ensure doors open for her to get the best possible advice."

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.