Sunday, 14 July 2013
It was just after midnight when the phone rang.
Will Mellor jumped out of bed and stood bolt upright, staring at it.
He knew he had to pick up, but he was scared because the sense of dread exploding in his gut was telling him that phone call was going to change his life for ever. And it did.
Because when Will finally found the courage to answer, it was his dad telling him his sister Joanne was dead.
“I know now what people mean when they talk about their blood running cold,” says Will. “I just remember feeling dizzy and then my legs collapsing under me. I kept saying to my dad, ‘What can I do? What can I do?’
“But I couldn't do anything. My sister, this amazing woman who was the heart and soul of our family, was dead. And none of us had seen it coming. I will never forget that feeling of shock. Even thinking of it now, I get dizzy.
“I’m walking down a street watching people laughing, eating, getting drunk and I think, ‘You have no idea what me or my family are going through.’
“There’s a hole in our lives and in our hearts where Joanne used to be and nothing will ever fill it.”
Will, his mum Shirley and sister Janice spoke after an inquest ruled that Joanne’s sudden death from heart failure last September was due to natural causes. Her death was unexpected and came shortly after she’d been diagnosed with diabetes
Joanne, 44, who was born with Marfan’s syndrome and had both physical and mental disabilities, died just three weeks after returning from a holiday with other disabled friends. The trip was organised by a company recommended to the family by Stockport Council’s Disability Unit.
The Mellor family demanded an inquiry to find out whether carers at Chrysalis Holidays, which provides breaks for disabled people, had contributed to Joanne’s death by ignoring written instructions from her doctors on what medication she should take for her heart condition. Doctors had insisted she have five warfarin tablets a day and had written it all down in a special book which was handed to Chrysalis. But a carer with no medical training decided to give her just one a day. Why?
“Because that’s what I’d done with people in the past,” he told an inquest.
Three weeks after that holiday, Joanne collapsed and died of heart failure.
And while the coroner said there was no evidence the bungled medication had caused Joanne’s death, she told Will’s family that what had happened was unacceptable and she would be writing to Chrysalis to tell them that.
“You know what kills me?” says Will, his dark eyes clouding with sadness. “I cannot bear the fact that during Joanne’s last three weeks on this earth she was plagued by anxiety and fear because of what that carer had done”.
“In her head she’d always believed that if she didn't take her pills she’d die. And that was because 20 years ago she nearly did die. I was just 17 and had come home from the pub with my dad. The phone rang and we were told Joanne had collapsed on her way home with some mates. I remember I just ran out of the house and kept running till I got to where she was.
“I was already crying when I turned the corner and saw her lying in the road. She was all grey and wide-eyed and there were people standing around her. I fell to my knees, weeping like a baby.
“I asked her if she was OK. And this incredible woman who was at death’s door just looked into my eyes and said, ‘Why are you crying, son?’ Joanne always called me ‘son’ because I was the youngest. That was Christmas 1992 and it was one of the worst of our lives. Doctors told us she might not make it so we had Christmas in hospital... Mum, Dad my four sisters and me”.
“Joanne loved disco lights so we put them up all around her bed and we had a party for her. And did my sister love to party,” he laughs. “She’d always make a speech to say, ‘Thank you for coming and I love you all.’ Then she’d drink lots of Guinness and belt out Pretty Woman, her favorite song. But even though she pulled through that, her heart was weak and she had to have a special valve fitted. It was after that she changed.”
“She lost her confidence and was always terrified she’d collapse again and die. Her physical disabilities got worse around that time too and she was virtually confined to a wheelchair.”
“That’s why she was religious about her pills. She told us she told that carer at Chrysalis Holidays time and again she needed five every day – even though he denied this at the inquest.”
“She even gave him her special book where it was all written down by doctors, but he didn't read it. And you know why?” says Will, 37. “He wasn't seeing Joanne, the person my family adored. He was just seeing some disabled person who, he decided, didn't know what she was on about.
“It took every ounce of my strength at that inquest not to grab him and say, ‘Do you have any idea what my sister’s been through? How hard she’s fought to stay alive? How scared she was of dying?’ I wanted to scream at him that he’d degraded her by refusing to listen to what she had to say.”
“He treated her like she was an idiot and in her 44 years on this earth no one had ever treated Joanne like that. People who knew her loved her because she was a beautiful person. The terrible irony is that while lots of disabled people don’t have a voice, Joanne did.”
“She had a loud voice and she told that man what pills she needed. But he didn't listen. It’s hard to believe it’s a coincidence that three weeks after coming back from that holiday – and having missed 20 tablets we were told were vital for her heart valve to work properly – she dies.”
“How many more disabled people has this idiot not listened to? How many more vulnerable people are being mistreated by these holiday companies?”
Will bangs his fist on the table, literally shaking with anger. His sister Janice, a few feet from her baby brother, puts a comforting hand on his knee and tells him to calm down.
“The last nine months have been hell for us,” says Janice. “Because we've had to live with the uncertainty of how Joanne died. It was the one week of her life one of us wasn't with her... and this happens.”
Will’s mother, Shirley, who has been listening quietly, starts to sob: “I keep thinking this is all my fault,” she says, her sad eyes brimming. “That we let her down. I said she could go on that holiday after Stockport Council recommended it. They said it was fantastic and Joanne said she really wanted to be with her friends. So I said yes.
“Now we know that even though the council has been sending disabled people there for 10 years, no one had bothered to properly check it out.”
Will’s anger bubbles to the surface again: “How can it be that people with no medical experience or training are allowed to take care of society’s most vulnerable people? I swear I will do whatever it takes to make sure that what happened to Joanne doesn't happen to another disabled person.”
“The law has to be changed so that these places are properly monitored. And why is it that some of the people who work with the disabled don’t actually care about them?”
“I know there are some fantastic carers out there. My sister is one of them. We just need to make sure that private companies are subjected to the same rigorous checks as council homes.”
Will’s passion about the disabled is clear: “I have two kids and I made sure they got to know Joanne. I also make sure they get to meet other disabled children. Because what’s wonderful about kids is they don’t see the disability. They see the person first. Why can’t the people whose job it is to take care of them see that?”
“My family has been cheated. My mum and dad have been robbed of their daughter and the rest of us have been robbed of the sister who was our rock. Everything revolved around Joanne. We've always been close as a family but we all saw more of each other than we probably would have done because of her. She was the glue that kept us all together. Our job, our lives have always been about making Joanne happy, making her smile. And when she did, we were all happy. Our house was always filled with laughter because of her. She was genuinely funny, which is hard when you’re in constant pain like she was. In the last 10 years she had chronic arthritis and curvature of the spine but still, she wanted to laugh and live life to the full.”
“Yes, she knew she was different. She knew she’d never have the lives we had... kids, a husband. But she was always surrounded by people who loved her. There was an army behind Joanne and we know that isn't always the case for disabled people.”
“And even though we didn't talk about it, we all felt that maybe Joanne wouldn't live as long as the rest of us. But to lose her in this way, with all these unanswered questions, is beyond painful. Which is why I want to start a charity in her name and my first port of call will be Samantha Cameron, whose son Ivan died from cerebral palsy and who is an ambassador for Mencap.”
Joanne, who died last September 10, was buried at the family’s local church in Bredbury, Stockport.
“The turnout was amazing,” says Will. “We’d already had calls from Angela Griffin and Sheridan Smith, who both adored Joanne.”
"Some of the Hollyoaks cast were there. There was standing room only in that crematorium. Even the vicar cried when he delivered the eulogy.
“I know as a family we have to try and move on but it’s hard because there will always be something missing. Birthdays, Christmases, family get-togethers will never be the same because the person who was the best of us won’t be there. I know I speak for my whole family when I say we were privileged to know Joanne. She made us all better people.”
A spokesman for Chrysalis said: “We extend our condolences to every member of Joanne Mellor’s family.
"Chrysalis has openly and frankly admitted from the outset... that a mistake was made. As a result of the incident practices have been reviewed.”
Stockport Council said it was “fully aware of the concerns of the family”, adding: “We have been in touch, and will communicate further.”