Livvy Haydock: ‘Disabled gangsters supported me with my MS diagnosis’

  • By Beth Rose
  • BBC Access All


Livvy standing in the middle of two masked people involved in kidnapping gangs

Known for making documentaries with some of the world’s most notorious criminals, investigative journalist Livvy Haydock had a shock closer to home when she was diagnosed with multiple sclerosis (MS). But she has found support from the most unlikely people – the criminals she interrogates.

“I’ve always been told I’m not afraid of anything, but this MS terrifies me,” admits Livvy. “I feel so small.”

The 38-year-old has lived an edgy life, producing and presenting documentaries on topics ranging from girl gangs to child soldiers in Congo. His latest hit is Gangster: The John Palmer Story for BBC Sounds, which investigates his involvement in the 1983 Brink’s-Mat gold bullion robbery – the biggest armed robbery in British history.

It was his love of American rap music as a teenager that formed his fascination with the criminal underground, gangs and violence.

“I wanted to figure it out,” she says. “Most of the time people who commit crimes don’t talk about it from their perspective.”

It helped her understand what motivates them to take such risks – and how sometimes the choices can seem “logical” to them.

It was while Livvy was investigating the Philippines’ drug war in 2016 that a twist in her own life began to unfold.

“There was something really wrong with my legs,” she told BBC Access All. “I was sure it was questionable food.”

Livvy finished her film and returned to the UK, but the symptoms persisted. Over the next four years, she made several visits to the doctor but never got a diagnosis. In 2020, it was suggested she had a lumbar puncture – a test of her cerebrospinal fluid – to “rule out MS”. But the result confirmed the opposite.

MS occurs when the protective layer around nerve fibers – myelin – is damaged and stops the flow of messages between the brain and the body. It can affect the spinal cord and impact vision, movement and balance.

After a call from a neurologist confirming that Livvy had MS, she was told she would receive another phone call, within the week, to plan her treatment. But weeks passed and no phone calls came, as she tried to hold on. “It was like being given a grenade,” she says.

She distracted herself by focusing on the documentary she was working on about kidnapping gangs – “It was easier to think about it,” she says.

But over Christmas, “the grenade went off”, and a minor family disagreement turned into “something EastEnders”.

And Claire, a person in a wheelchair, reveals that she has been waiting for more than three years for her social housing to be adapted, despite the work being stopped by the town hall in 2019.

The nurse finally called, and as Livvy began to process the diagnosis, she knew she would have to consider her future very carefully, especially when it came to her dangerous investigations.

She’s lost count of the number of freezing nights she’s waited outside for drug dealers to show up for interviews. “They are the most unreliable people in the world,” she jokes. She often denounces stragglers for the pain they have caused her.

But her job has also been her salvation — not just as something she can lose herself in, but as an unlikely source of support and empathy.

“I encounter a lot of handicaps in the world of crime,” she says. “At one point, the majority of gang members I interviewed were either in wheelchairs or had ongoing medical issues from gunshot wounds.”

Sickle cell disease is a debilitating condition that she encounters frequently. The red blood cells become deformed and sticky, blocking the vessels and limiting the oxygen supply, which triggers excruciating pain.

One of his contacts was receiving treatment in hospital when he fell victim to a honey trap. A rival gang sent him Instagram messages, pretending to be a woman and saying how “sexy” he was.

“He’s in the hospital and says ‘Come see me’, so the rival gang went to him in the hospital and attacked him. It was outrageous,” she said.

Another of his favorite contacts to talk to about living with a disability is a reform gang member based in the United States. At the height of his notoriety, he ran 30 drugstores in Dallas. Then his gang turned against him.

“They shot him in the head – that bullet went through both optic nerves and they left him to die. He managed to get up and he’s now completely blind,” she said.

Some of the criminals Livvy goes to also deal with their disabled friends and family.

“So many young people look after their parents. I won’t justify their crimes with that, but it’s having this idea of ​​what drives them to need money,” she says.

Livvy’s MS affects her legs, her vision and she feels shooting pains in her sides like “electric shocks” – a well-known symptom of MS.

She may also struggle to find the right words – “I end up saying weird sentences because the messages in my brain aren’t working.”

Its treatment consists of an infusion every six weeks to help reduce the amount of damage and scarring to the myelin sheath.

The condition also brought up other issues she hadn’t expected to face, such as telling potential partners about her MS.

“It’s hard enough trying to date,” she says. “I want to meet someone and settle down, but it bothers me.”

As a freelancer, she now has to rethink her life plan and career, to make sure she manages her money, health and safety in her unusual job.

“It’s a tough industry and I’m always afraid to be absent,” she says. “You don’t say no to jobs because you’re afraid they won’t ask you anymore.”

But even if her career takes a different turn, she intends to continue to confide in her contacts who understand what she is going through.

“There’s a gentleman I know who spent an awful lot of time in jail and fell out of his bunk, causing horrible injuries to his back. We talk a lot because we can relate to so many things .

“It’s kind of funny, we go from discussing flights to ‘How’s your health?'”

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