Health activist Lynda Williams faces her biggest health battle

By Martin Johnston

Long-time patient advocate faces cancer head-on.

In a world before patients had won their modern-day rights, women's health activist Lynda Williams had to improvise with a written plea attached to her premature daughter's intensive-care cot.

Sam was born nine weeks premature in 1977 and was put in National Women's Hospital's neonatal intensive care unit.

"They were feeding her formula rather than my expressed milk," says Williams, now aged 66 and the mother of five children and grandmother of six.

"So I put a notice on the cot: 'My mother loves me. She is expressing milk for me which is stored in the fridge. Please do not feed me infant formula'."

But the staff ignored her request and continued feeding Sam formula, so practical Williams went to take her daughter out of the unit, sparking a stern response from staff.

"They called the police and said they would approach the courts to remove custody because they weren't ready to release her yet.

"She was part of a control group of some research that was being done and I arrived to find her being examined by somebody who wasn't a doctor and when I asked what he was doing he said there was some research going on and they're doing research on prem babies.

"I don't know to this day what it was; I was never given any details."

Williams consulted a lawyer, who advised acting calmly and rationally, which she did when next she went to remove Sam.

She succeeded, with the only repercussions being some "ridiculous" conditions such as phoning the unit with daily updates and taking the baby back to hospital for a weekly check.

This saga strengthened Williams' "feeling of outrage" at the treatment of expectant mothers and other women in the health system and was a catalyst for her dedicating more than 35 years as a women's health activist.

However, it is a career soon to end, earlier than the 20 more years of activism and "being a pain in the butt to the health system" that Williams had hoped for: she has terminal pancreatic cancer.

Lynda Williams with daughter Sam. Photo / Supplied
Lynda Williams with daughter Sam. Photo / Supplied

Diagnosed in October last year with inoperable tumours that had spread, she has since struggled through chemotherapy and is now feeling relatively well - well enough to get back to work and negotiate with her family about aspects of the end of her life. She has even taken to blogging about life with cancer, at lyndasletters.nz.

Cruises, parachute jumps and Pacific island resorts are absent from Williams' bucket list, the only hint of luxury was a Queen's Birthday weekend family trip to the Chateau Tongariro.

Instead, she wants to complete unfinished business, such as being alive long enough to read the forthcoming book of retired gynaecologist Professor Ron Jones, and getting hospitals to agree to cancer patients seeing the same oncologist at every visit.

Dr Jones was one of the whistle-blowers at National Women's Hospital whose academic article in 1984 led, via the "unfortunate experiment" article in Metro, to the Silvia Cartwright-led inquiry into cervical cancer treatment at the hospital. The resulting 1988 Cartwright report shaped Williams' subsequent career.

Following her own experiences at National Women's with Sam and her firstborn, during which she felt she had little control over how she was treated, Williams joined La Leche League and other groups where contact with other women reinforced her frustration at how women were being treated.

In 1980, after training in childbirth education, she held classes in her home to teach women "how to give birth normally and retain control over the birthing process".

She was active in the Homebirth Association and the movement that led to midwifery education being separated from nursing and which won the right for midwives again to deliver babies independently of doctors. It was Williams' heyday.

"The cervical screening programme was set up. Women's health was suddenly top of the agenda. There were significant changes that benefited men and women in terms of patients' rights - the need to consult, informed consent, and whether they wanted to be part of research trials."

There were significant changes that benefited men and women in terms of patients' rights.
Lynda Williams

In the '80s, she began working part time for Fertility Action - later named Women's Health Action - and began attending hospital board meetings to try to understand the "unwritten rules" that govern the health system.

The Cartwright report called for the appointment of patient advocates. Williams got the job at National Women's and fell into the lion's den of post-Cartwright rancour which she recalls as "a very hostile environment".

In a review of the advocacy service she was branded - by doctors - a "man-hating, doctor-hating feminist", but the reviewer wrote he had not seen any evidence of this and Williams had denied it.

Reminded of the episode, Williams laughs and says the reviewer had warned her to watch her back at all times.

She recalls the shock expressed to her by a man - after he had read in the Herald that she was an alleged man-hater - whom she had supported as an advocate over the issue of refusing blood transfusions for children on grounds of religion.

She returned to Women's Health Action and became co-ordinator of the Maternity Services Consumer Council and the Auckland Women's Health Council and is still in that role at the health council.

Lynda Williams at her home in Swanson, Auckland. Photo / Doug Sherring
Lynda Williams at her home in Swanson, Auckland. Photo / Doug Sherring

Sandra Coney, co-author of the Metro article, says of Williams' contribution to women's health, maternity care and health information: "She's absolutely unique. She's given a lifetime to this and made probably a considerable personal sacrifice to carry out that role."

Ombudsman and former Health and Disability Commissioner (HDC) Professor Ron Paterson recalls her sharp criticisms of him and others, but says such a voice is vital.

"She's capable of taking an extreme view on things but in a health sector where so much of the noise comes from professional and provider groups, I think it's very healthy to have well-informed, sometimes fierce criticism from a consumer advocate. Her contribution has been immense both in keeping Ministers of Health and the ministry and watchdogs like the HDC on their toes but also in the way she's taken a keen interest in the work of district health boards, attending the open sections of their board [and committee] meetings."

To the suggestion that she has taken an uncommonly practical view of her mortality, Williams states bluntly that the poor survival statistics for metastatic pancreatic cancer left her no choice.

But she finds something good in her situation. "This is a special time for us as a family so I'll be able to leave my kids, having travelled along this journey of acceptance of my impending death and be a part of that without being whisked out of their lives suddenly.

"That feels like a real gift."

Lynda Williams

• 1973-1980s: Volunteer in maternity and parenting organisations

• 1980-1995: Childbirth educator

• 1987-1990: Direct Entry Midwifery Taskforce

• 1988-1989: Fertility Action co-ordinator

• 1989-1992: National Women's Hospital patient advocate

• 1992-1995: Women's Health Action co-ordinator

• 1992-March 2016: Maternity Services Consumer Council co-ordinator

• 1995-present: Auckland Women's Health Council co-ordinator

- NZ Herald

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