Wednesday 14 November 2018

Women versus the Irish State: Why are women like Vicky Phelan repeatedly forced into battle?

Women deserve compassion and respect as they deal with health services. So how come so many in the recent past have been treated like enemies of the State?

Vicky Phelan who received incorrect smear test results in 2011 and was subsequently diagnosed with cervical cancer in 2014. Photo: Fergal Phillips
Vicky Phelan who received incorrect smear test results in 2011 and was subsequently diagnosed with cervical cancer in 2014. Photo: Fergal Phillips
'Appaling breach of trust': Vicky Phelan with husband Jim and children Amelia and Daragh. Photo: Fergal Phillips
Savita Halappanavar
Louise O'Keeffe
Susie Long. Photo: Mark Condren
Kim Bielenberg

Kim Bielenberg

As she relied on the kindness of strangers, her friends and family to pay for her cancer treatment in recent weeks, Vicky Phelan had good reason to be scandalised by the behaviour of the State.

The powers that be had a duty of care to look after the Limerick mother when a smear test failed to pick up the initial signs of cervical cancer.

Three years after her test, she was finally diagnosed with the illness.

But it took another three years before anybody took the trouble to tell her that her test had shown a false negative.

As she put it herself, keeping the information from her was an "appalling breach of trust".

As if her struggle with cancer, which is now terminal, was not tough enough, Vicky had to go to the courts - and face the might of the State - to seek redress. And like all too many women in the recent past, it could be argued that she was treated like an enemy of the State, rather than as a citizen deserving compassion and respect.

She had to find the funds herself for the expensive cancer drugs that she is taking as part of a clinical trial. They cost €8,500 per dose.

The story of the terminally ill Limerick woman, who insisted on lifting the lid on the appalling incompetence in our health service, is a profile in courage and composure in the face of enormous pressure.

It repeats a pattern of secrecy, obfuscation and downright negligence among those in authority that is all too familiar to women who deal with the health service, and some other State agencies.

It harks back to the days of Brigid McCole, the 54-year-old Donegal woman who died in St Vincent's Hospital in Dublin in October 1996 after taking on the State after she was one of thousands of women infected with contaminated blood products.

At the time, the State was determined to defend itself - and put pressure on victims who dared to seek justice.

As with the case of Vicky Phelan, the case of McCole and hundreds of other women exposed to infected blood products revealed a culture of keeping things quiet.

The scandal involved Anti-D, a blood product that was mainly given to pregnant women with a particular blood group whose babies were at risk of developing a blood disorder disease.

The scandal came to public attention in 1994 when it emerged that the Blood Transfusion Service Board (BTSB) had failed to prevent the use of blood donated during the mid-1970s by a woman who was known to have jaundice. Although the BTSB was warned of the possibility of contaminated blood in circulation on at least two occasions, it failed to raise the alarm and warn those who had been injected. They were kept in the dark.

Orla O'Connor, chief executive of the National Women's Council, says: "It is absolutely shocking in 2018 that we have another case where information was not given to patients.

"It is incredible that once again women were not told of the consequences of mistakes."

The culture of secrecy was underscored when an attempt at mediation was made in the case of Vicky Phelan. She said she was asked to sign a confidentiality agreement.

Gagging clause

She was adamant that she would not sign any gagging clause, because she wanted what happened to her to be exposed.

The State Claims Agency, which handles negligence cases for the HSE, said the request for confidentiality came from the US laboratory that had been subcontracted to assess tests.

However, following the Phelan case and that of the many other women who were kept in the dark about their tests, it is hard avoid the conclusion that some of those in authority would rather defend the State establishment - rather than the public interest, and in particular the women affected.

There seemed to be a reluctance to pass on the test results, and clinicians were even told that in some cases, discussion of the results with patients "could do more harm than good". And if a patient died, the details could just be recorded on the file.

The State Claims Agency - which is dealing with 10 active cases connected to the controversy - issued a statement this week stating that it does not intend to fully defend similar cases to that of Vicky Phelan, where the State is substantially responsible. However, those words will ring hollow to the many women who have had to take legal action over HSE blunders, and have had their claims contested.

Caoimhe Haughey, a solicitor who handles medical negligence cases involving the HSE, tells Review: "My experience of dealing with these cases is that it is a nightmare. Everything is fought tooth and nail. Clients are always very nervous about how much it is going to cost to take action and how long it is going to take.

"The system is set up in order to frighten people from taking action," says the Dublin solicitor.

The State Claims Agency insisted this week that in cases of medical negligence, its policy was to admit liability as soon as medical evidence indicates that there has been a breach of duty.

But Caoimhe Haughey disputed this, and describes the agency's claim as "disingenuous" and "utterly untrue".

"Even if I have a medical report that states that there is a clear medical case, if they have a medical report that says there isn't a case, they fight on."

The solicitor says it can be difficult to gain access to complete medical records and correspondence relating to a case. In order to take a claim, the solicitor has to find medical experts in the UK.

"I have to go to the UK all the time to get experts, because I cannot get doctors to stand up against each other in this jurisdiction," says Caoimhe.

In some cases, the State has adopted an aggressive legal strategy, and this approach has a long and ignoble history.

It was certainly true in the case of Brigid McCole and the Hepatitis C scandal. In the summer of 1995, the Chief State Solicitor warned Positive Action, the umbrella group for the Hepatitis C victims, that they would face "uncertainties, delays, stresses, confrontation and costs" if they went to court. The State warned that it would continue fighting them "if necessary to the Supreme Court".

€1bn compensation bill

After putting her through a legal ordeal, the BTSB finally reached a compensation settlement with Brigid McCole just days before she died. Eventually, the State was forced to pay out more than €1bn in compensation to victims as a result of the Hepatitis C scandal and related claims.

The approach of the Minister for Health at the time, Michael Noonan, was regarded as legalistic rather than humane. And it would have been quite understandable if it finished off his career as a minister.

The tough approach was certainly taken by the State in the case of the Tipperary woman Olive Fahey, whose plight would be recognisable to anyone who has followed the case of Vicky Phelan.

Her breast cancer was misdiagnosed three times in a 19-month period. She was referred to Barrington's Hospital in Limerick in September 2005 with a lump on her breast, and had tissue samples sent to Galway for testing.

Samples had been returned as benign, but it later emerged that they should have been recorded as malignant.

It took five years before Olive Fahey was able to settle a legal action over the failure to diagnose her condition between 2005 and 2007.

The High Court heard the failure to diagnose Olive had had catastrophic consequences - she had to have a mastectomy, 30 sessions of chemotherapy and radiotherapy and also has a debilitating swelling of her left arm.

At the time, Olive's solicitor, Cian O'Carroll, who also acted for Vicky Phelan, said his client's plight was compounded by the defendants contesting the case over five years. It brought Olive and her husband Michael to the point where they had to surrender their privacy and anonymity and go to court.

Donal Buggy, head of services and advocacy at the Irish Cancer Society, says the potential gamble involved in taking court action puts many people off. "It is used as something that has a chilling effect on patients seeking redress. They may feel that they can't go through it, and that they are too sick to take action."

Buggy says the focus tends to be on the damages paid out, but often the primary driver of patients taking action is to understand what actually went wrong.

"Also patients are keen to ensure that the same thing will not happen to other people," he says.

Of course in many cases, such as that of the Kilkenny cancer sufferer Susie Long, tragedy strikes before the victim of health service incompetence has time to seek redress.

While botched tests and poor communication are behind the case of Vicky Phelan, chronic delays in accessing care are also a continuing problem, particularly for public patients. This is surely a form of negligence.

Susie was referred for a colonoscopy in summer 2005 but had to wait more than seven months on a hospital waiting list to have the procedure. During that time her cancer spread and she died in October 2007. She could have been just another HSE casualty, but Susie brought the issue of waiting lists into the public eye when she told Joe Duffy's Liveline programme that she was going to die "because of hospital waiting lists".

How much has changed a decade on? Susie's husband Conor Mac Liam said recently that 10 years after Susie's death there are still people waiting more than a year for a colonoscopy.

Anyone who followed the spate of perinatal deaths in the Midland Regional Hospital in Portlaoise, reported by Prime Time in 2014, will certainly see similarities in the Vicky Phelan case.

The then Minister for Health said the failure to share the reports into the deaths of babies in the Portlaoise hospital was "utterly unacceptable".

A subsequent HSE review of complaints about Irish maternity units by patients found there was frequently a lack of communication around their care, with patients reporting difficulties accessing their own health records.

It is not just in the field of health where the might and power of the State are lined up against citizens.

Louise O'Keeffe, a victim of child abuse at a West Cork school, famously had to fight the State every step of the way before she won a case in 2014 in the European Court of Human Rights. The court found that the State was liable for abuse carried out by Ms O'Keeffe's teacher in the 1970s, when she was eight years old.

In the wake of the judgment, several alleged victims of abuse in schools have complained that the State is putting obstacles in their path to stop them seeking redress for similar crimes.

As the details of the Vicky Phelan case unfold, and more stories about how patients were kept in the dark emerge every day, close observers of our health service will wonder if the way women are treated will actually improve.

As in previous crises, there will be investigations and inquiries, soul searching and promises of change. - and this time there is likely to legislation requiring open disclosure of information.

But Donal Buggy of the Irish Cancer Society warns that new legislation will not be enough to solve the crisis.

"What is really required for change to happen is a fundamental overhaul of the entire culture of our health service," he says.

@KimBielenberg

Cases of mistreatment

Savita Halappanavar

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Savita Halappanavar
 

Dentist Savita Halappanavar (31) died in 2012 at University Hospital Galway after being denied an emergency abortion. The Indian woman (right) was 17 weeks' pregnant when she died after contracting sepsis during a miscarriage.

Prof Sir Sabaratnam Arulkumaran, who led a HSE investigation into her death, told an Oireachtas committee: "If she had a termination in the first days as requested, she would not have had sepsis."

Brigid McCole

The Donegal mother-of-12 was among the women who died from the infection of the Anti-D blood product, given to women close to childbirth. Over 1,000 women became infected with the virus and the controversy, which became public in 1994, led to the Finlay Tribunal.

Louise O'Keeffe

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Louise O'Keeffe
 

O'Keeffe (above) won a marathon fight for justice when the European Court of Human Rights ruled in 2014 that the Irish State had been negligent in failing to protect her from abuse. She had been abused by her then-principal, Leo Hickey, in the Cork school.

Grace

High Court president Mr Justice Peter Kelly described the treatment of a young woman with intellectual disabilities as a scandal after she was left in the care of a foster family for 20 years despite physical abuse, gross neglect and possible sexual abuse. He approved a €6.3m settlement package for the woman referred to as 'Grace', whose story was brought to public attention by the RTÉ report Duty of Care.

Susie Long

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Susie Long. Photo: Mark Condren
 

The 41-year-old Kilkenny mother (above) used the alias 'Rosie' to tell listeners of Joe Duffy's Liveline in 2007 that she would die "because of hospital waiting lists". She said that she had to wait seven months for a colonoscopy to diagnose her bowel cancer.

Victims of Symphysiotomy

It has been a tough road for victims of the archaic medical procedure that involved cutting the joint between the two sides of a pregnant woman's pelvis to allow the baby to pass through unrestricted. Up to €34m has been awarded in a redress scheme to hun­dreds of women who suffered severe side effects as a result of the procedure.

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