Last April, Johnny Alfrey was a seemingly healthy young man with a bright future.
The 22-year-old was in the second year of a university degree and dreamed of becoming a professional musician. Two months later, he was dead.
Doctors at Fairfield Hospital in Bury had failed to spot that his heart was failing. In the weeks before his tragic death on June 24 of last year, Johnny visited hospital eight times seeking medical treatment.
READ MORE: University of Manchester students enter second day of occupation as buildings 'locked down'
Although tests revealed he had an irregular heart rhythm, medics were left perplexed by his symptoms, which they initially brushed off as signs of anxiety.
Last month, a coroner ruled that Johnny, from Littleborough, Rochdale, would have survived if medics had noticed he had heart failure. Had he been referred to a cardiologist, an inquest heard that Johnny's hidden condition would likely have been identified and he could have been treated.
More than seven months on from Johnny's death, his mum, Julie, is still struggling to come to terms with his loss.
"My life is unrecognisable without Johnny," she said. "Knowing he could have been saved makes me angry.
"The system failed him. We are angry, bitter and bereft. We are broken, much like the system that is the NHS."
At the time of his death, Johnny was a history student at the University of Salford. His true calling was music though. Proficient in a number of instruments, he had previously formed and played in a band with friends.
"That was life," said Julie. "He was amazing, really talented.
"He had huge plans, he wanted to be a megastar. He was a really popular guy, everyone loved him."
Julie enjoyed a close relationship with her son, the oldest of her three children.
"I understood him like other people didn't," she explained. "He was the entertainer in our house and it's a very quiet house without him."
Before May of last year, Johnny had never shown any signs of a heart problem, according to Julie. So when he began complaining of fatigue and ‘heaviness in his legs’ while walking, she became concerned.
In the days that followed, Johnny began vomiting and suffering migraine symptoms. He was also struggling to sleep or eat - which he initially believed were the result of panic attacks.
While he had experienced anxiety and panic attacks in the past, Julie said her son knew how to control them.
Knowing something was not right, she took Johnny to Rochdale Urgent Treatment Centre on May 23. Johnny collapsed in the waiting room while waiting to be seen.
He was put on a drip and tests showed he had an irregular heart rhythm - known as a prolonged QT - which doctors told Julie was ‘benign’ due to his age.
Johnny was referred to Fairfield Hospital for further assessment. While waiting for an ambulance, Julie claimed her son was told he was ‘likely to be on a corridor overnight’ and was ‘encouraged to leave’.
He eventually made it to hospital on May 25 - two days later - having continued to feel unwell. An IT failure meant doctors at the hospital were unable to access Johnny's previous test results during the visit.
Following further tests, Julie said a doctor told her there was ‘nothing to worry about’ and put Johnny’s symptoms down to a panic attack. He was sent home, but returned to hospital two days later.
He was found to have 'abnormal liver function', which led to doctors wrongly concluding he had hepatitis.
An ECG (electrocardiogram) carried out on Johnny also revealed his irregular heart rhythm had worsened but medics continued to dismiss it as 'benign'. An ultrasound scan should have been carried out following the discovery, after which he would likely have been referred to a cardiologist and diagnosed with heart failure, the inquest into his death heard.
He would then have been kept in hospital for treatment and monitoring. Johnny was instead discharged on May 31 and his condition deteriorated before he returned to hospital on June 8.
By that point, he was suffering from multi-organ failure and went into cardiac arrest twice before being transferred to Wythenshawe Hospital for emergency open heart surgery. However, the surgery came too late and Johnny's life support was withdrawn on June 24.
In the gruelling months since Johnny's death, Julie has repeatedly asked herself whether she could have done more.
Despite being reassured that her son's irregular heart rhythm was nothing to worry about, she says it continued to play on her mind as Johnny became increasingly unwell. As doctors struggled to explain what was wrong with Johnny, Julie repeatedly raised her concerns.
"They were sedating him, saying it was panic, anxiety," she explained. "They just did not look into the worst case scenario, instead focusing on the symptoms and overlooking the cause.
"They left him with heart failure over a two-week period and in that time his organs failed. If it had been picked up, he would have been alive.
"I feel very angry about what happened. You have to trust them, you have no other option, but they were very, very wrong."
She added: "I'm going to eternally feel guilty that I didn't do more. As a mother, you want to protect your child.
"He was pleading with me to help him, thinking he was going to die. That's the upsetting, traumatic bit. I was watching him die and he was scared.
"I made a promise to Johnny that I wouldn't let anything bad happen to him. I couldn't keep that.
"I want to turn the clock back and do more, but what else would I have done? It wasn't me that let something bad happen to him.
"It was out of my hands and that's a scary thing for a parent. I had no control over anything in the hospital because people who were qualified insisted that they had the answers.
"People pay their taxes and expect to receive a service from it. I've worked all my life and when my child needed emergency intervention, NHS staff got it terribly wrong.
"The NHS costs us a lot of money and yet so often it's not fit for purpose when our lives depend on it. I made the mistake of trusting that it would be able to help us."
An investigation carried out by the Northern Care Alliance NHS Foundation Trust, which runs Fairfield Hospital, has since acknowledged a series of failures that contributed towards Johnny's death.
Yet Julie remains angry about her son's death and says she wants people to be held accountable.
"My son's death is a drop in the ocean to the NHS," she claimed. "It's just a blip.
"I don't hate the NHS and nobody woke up and thought we're going to let a 22-year-old die.
"I know it wasn't intentional, but there was an arrogance with some people that they know more and, at times, an insistence that we should stop asking questions and go away.
"We weren't listened to at the most critical time. People can't get away with that. It makes me feel angry as it disempowers patients and their families. For us, trivialising our concerns was fatal."
Following the conclusion of the inquest, the trust offered its condolences to Johnny's family, stating that it was 'with regret' that the care given to him fell below its expected standards. However, Julie said the trust's words 'means nothing'.
"A heartfelt apology from an individual person would go a long way but an apology from the NHS system is insulting in a way," she said.
"The NHS Trust's investigation amounted to an action plan that is of no consequence to our family and compensates in no way for our loss.
"I'm very bitter about it because my son is dead at 22 years old - a man who had everything to live for and was a good person.
"They have just had to make a checklist of things they might want to change a little bit like it's some meaningless survey at the end of something you see on the internet where it says 'how did we do?'
"It's nothing to them."
In a bid to continue Johnny's legacy, his friends and family have set up an annual event in his name. The Johnny Alfrey Music Memorial will be held at Littleborough Cricket Club on April 29 and will feature live music from Britpop indie band The Bluetones, as well as a line-up of new bands and established local acts.
The aim, says Julie, is to support young people to develop skills that may lead to careers in the music industry.
"We want to set up the charity so that other young people have the opportunity to do what Johnny wanted to do," she added.
"It's something he would have loved to be a part of, creating a community which comes together to appreciate musical talent. It will be bittersweet because I just wish he was here to lead it."
She said Johnny is 'always' with her. "He is in my heart and everything I do. I have to carry Johnny through the rest of my life in some way so having his name put to a memorial like this is what I will do for the rest of my days. I can't leave him behind.
Dr Vicki Howarth, Medical Director at Fairfield General Hospital said: “We are truly sorry for the tragic loss of Johnny and we take very seriously our responsibility to learn from this sad and devastating situation. We will of course take steps to contact Johnny’s mum Julie.”
READ NEXT:
- Woman, 23, left in searing pain and housebound for weeks after her face suddenly started to swell
- 'Changing one shopping habit has saved me £1,000 a year'
- 'My partner got up off the sofa and went for a walk. He hasn't come home'
- 'This simple trick helped me lose almost four stone - anyone can do it'
- 'We were stranded in the freezing cold. A stranger's act of kindness blew us away'
