Northern Ireland nurse 'lost everything' after taking swine flu vaccine
'This has been a nightmare... I've been left abandoned but we can't do much without a government'
A Co Antrim nurse has claimed she "lost everything" after being given a flu vaccine which is being linked to a global rise in narcolepsy.
Hayley Best (41) is one of around 350,000 people here who received the swine flu vaccine in 2009 and one of 33,000 healthcare workers.
She was given the injection, which contained Pandemrix, just days after starting her first post in Craigavon Area Hospital's intensive care unit (ICU).
But within weeks, and just a few months after the mum-of-three graduated from university, her life began to unravel. Hayley was forced to medically retire before her 40th birthday.
"Everything was put down to post-natal depression," she said.
"Within a year I was suicidal and eventually the diagnosis changed to chronic depression.
"I did everything I could to try and get better but nothing worked.
"How many others are there like me?"
Hayley complained of being exhausted all the time and eventually began falling asleep behind the wheel of her car.
"I would just nod off and have these really vivid dreams and when I woke up I was in the car," she recalled.
"I would arrive places and have no memory of how I got there - it was terrifying."
Hayley also became extremely paranoid which took its toll in work and at home.
"I second guessed everything because I believed everyone was out to get me," she said.
"I even thought I was being bullied in work.
"My family life suffered too and my children, especially the younger two, have certainly not had the best of me."
By 2010, as her health continued to deteriorate, Hayley began losing confidence in her ability to do her job and took an entire year off.
"I got to the point where I felt it was safer for everyone if I just wasn't there," she said.
The former clerk, who had given birth twice during her five years of study, transferred from ICU and began district nursing closer to home.
However her symptoms worsened and she became overwhelmed by daytime sleepiness.
"Driving even short distances became a serious problem," she said.
"I would need to pull over two miles into the journey and nap for 20 minutes.
"I was losing things that eventually turned up in the freezer, including bank cards - it wasn't normal."
The distraught medic, who was struggling to breathe in her sleep, was left devastated when the results of overnight respiratory tests in 2014 failed to shed any light on the cause of her misery.
"I cried when they said everything was fine because I knew it wasn't and so did my husband," she said.
It was then that a consultant began to probe her about her "crazy" dream activity.
"I talked about my night terrors and how vivid they are.
"I told him about the black hand that strangles me in my sleep," she said.
"The hand, it's wrapped in a black leather glove, grabs my throat and squeezes until I can't breathe anymore."
The consultant recommended testing for narcolepsy and Hayley made arrangements to see a specialist in England.
It was then that she was diagnosed with the chronic sleep disorder.
But it was only after reading the harrowing story of a 23-year-old nursery assistant in England that Hayley realised there could be a link between the vaccine and the incurable sleep condition.
"I read the heartbreaking story about Katie Clack and how she struggled to deal with the terrible effects of narcolepsy," she explained.
"She ended up taking her own life but detailed her experience of trying to deal with the catastrophic side effects of the vaccine in a suicide note and I realised her symptoms were my symptoms."
She contacted the Southern Health and Social Care Trust which confirmed the vaccine she was given in 2009 contained Pandemrix.
"I cried and then I became very angry," she recalled.
"I try so hard not to be bitter, but it's difficult because I have lost everything.
"I'm not the person I want to be."
Hayley said the toughest part of her arduous journey has been trying to get the Department of Health to recognise the link between her life-shattering illness and the flu jab.
"It has been a nightmare, but my medical notes are crystal clear," she said.
"I was not ill before I was given this vaccine."
The now permanently disabled mum, who even requires supervision to have a bath, said she feels "betrayed" by the health service.
"It wasn't my decision to take it, I was told it was part of the job," she said.
"But what really galls me is that no one ever outlined the risks, which I believe were well known, and no one will take responsibility.
"I have been completely abandoned."
Hayley, who continues to fund her own travel to England twice a year to see a specialist, said that the absence of a devolved government has compounded her ordeal.
"I just want recognition, but honesty is a rare thing," she added.
"Many questions need to be answered but not much can be done without a government in place.
"I know I was a good nurse, but where is my NHS now? Where is my government?"
The Southern Trust and Department of Health said they would not comment on individual cases.