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Joanne Boyle cirrhosis sufferer awaiting liver transplant
Joanne Boyle, 35, has cirrhosis of the liver. She is awaiting a transplant that could save her life. Photograph: Christopher Thomond for the Guardian
Joanne Boyle, 35, has cirrhosis of the liver. She is awaiting a transplant that could save her life. Photograph: Christopher Thomond for the Guardian

Britain faces a liver disease 'epidemic'

This article is more than 10 years old
As rates of cirrhosis rise sharply in younger people, the government faces renewed calls for alcohol controls

Like many illnesses, it began with aches, pains and overwhelming tiredness. "Some days I couldn't be bothered," recounts Joanne Boyle, outwardly relaxed at the family home in Middlesbrough. "Then I noticed my stomach was a little bit swollen and then, come (last) Christmas Day I was just so ill. I started feeling really sick and my mum thought 'there's something wrong here'."

With no improvement, Boyle went to A&E two days later. After tests, she was sent home with medication but subsequently admitted to a high-dependency ward where she spent a month before she was told the grim news that she had cirrhosis of the liver. Her only option was a liver transplant. Without it she will die.

Boyle is just 35 years old. She says she was drinking heavily for a little over two years – at most up to three bottles of wine a day. "It seems a hell of a lot," she reflects. "I drank heavily, but not to the extent that I thought it would ruin my liver. There are a lot of people out there drinking a hell of a lot more."

In the north-east of England, Boyle's condition is not unusual. The region tops the liver disease league table, with more younger people – increasingly women – the victims of a condition that can kill.

50,000 admissions

In its latest analysis, Balance, a north-east public health pressure group, has recorded a 400% rise in cirrhosis among people under 30 in the region. The rise, in nine years from 2003 to 2012, may appear numerically small: up from 23 to 115 cases. But the overall increase in hospital admissions for alcohol-related liver disease in the region is chilling – a near 100% rise to 4,146 cases over that period. Nationally, there has been a 92% increase for alcoholic liver disease – up to nearly 50,000 admissions in England. And the Department of Health says alcohol-related hospital admissions in England topped 1 million patients in the last year at an annual cost to the NHS of around £3.5bn.

While people in middle age have traditionally suffered from cirrhosis, senior health professionals are alarmed by the growing number of younger people with it. Often, the only cure is a liver transplant. "We are now seeing people with end-stage liver disease due to alcohol [consumption] in their 20s and 30s – something previously never seen," says Steven Masson, a consultant hepatologist at Newcastle upon Tyne's Freeman hospital, where Boyle is being treated.

Colin Shivells, director of Balance, says heavy drinking is making Britain the sick person of Europe. "Of the top five killers, liver disease is the only one showing an increase," he laments. Balance is campaigning for a minimum unit price for alcohol and against a growing array of cheap drink promotions. Shivells sees a direct link between the low-cost alcohol heavily promoted in supermarkets, filling stations and countless bars, and an alarming increase in liver disease.

Much of the medical profession is despairing over government inaction after David Cameron earlier this year dropped plans for a minimum unit price to curb excessive alcohol consumption. Sir Ian Gilmore, the former president of the Royal College of Physicians who now heads the Alcohol Health Alliance, says cirrhosis has reached crisis levels in England, particularly among the young. "The rise is so stark that, in common parlance, it can now be described as an epidemic," he says. "Children in the 11-16 year-old range are beginning to drink regularly."

Freedom of Information requests by BBC Radio 5 Live to NHS trusts earlier this year found that 6,500 under-18s in the UK were admitted to hospital in the last year with alcohol-related illness. During 2012/13 there were 293 cases of children aged 11 or under attending A&E with alcohol-related conditions – a third more than the previous year. Although charities say fewer children are drinking overall, they are concerned that those who do may be drinking more.

Of the two wards at Freeman hospital devoted to liver disease, Masson says a third to a half of patients have an alcohol– related connection "and that is probably an underestimate".

"The earlier people start drinking heavily … the more likely they are to develop advanced liver disease," he cautions.

Boyle was put on the transplant list on 25 May; the day she turned 35. For her, alcohol was a way of life when she started work in her late teens. "As soon as I turned 18, I was working in a pub kitchen and I began to work in the bar as well," she says. Before long having a few drinks with colleagues at the end of a shift turned into something more. "I lost my job because of drinking," she says. "It just crept in … you get into a rut."

Boyle reacted with disbelief when she was told of the seriousness of her condition. "I was never out of order in the street. I was appalled at people misbehaving, peeing in the gutter or vomiting on the pavement - I'd have been absolutely mortified if that was me," she says. But she takes full responsibility. "I've nobody to blame but myself. I'm not going to make excuses like 'it's because of this or that'. There was no great trauma, no change, I didn't lose anybody. There's no point in looking back."

She vividly recalls the pressure on staff in the pub trade to push cut-price alcohol. "You are always being told to 'upsell' the offers – two shots (of spirits) for one, 'why buy two glasses of wine when you can have a bottle for not much more'. It's far cheaper to buy an alcoholic drink than a non-alcoholic one."

And when the bars, clubs and pubs close in Middlesbrough, and surrounding Teesside, cards in taxis taking drinkers home advertise an all night, door-to-door alcohol delivery service. "You phone up and they'll deliver you a crate of lager, bottle of spirits, wine, whatever … just like ordering a pizza. It doesn't matter what time the pubs shut, people can get hold of alcohol, although it's more expensive," says Boyle.

She is now on heavy medication, –"nine or 10" tablets a day – and additional pain relief pills if necessary. A metal tube, a "shunt", has been inserted in her liver to treat the increased blood pressure that occurs in cirrhosis – because the blood struggles to drain normally through the liver.

Every month, Boyle makes the 60-mile round-trip to the Freeman Hospital for a blood check and to be weighed. Her blood group, O-negative, is the most common. "They said 'in one way you're lucky because you're 70% of the population' – but there are also more in that group on the (transplant) waiting list."

Her transplant will take place if a suitable match is found – 85% of those on the waiting list have a successful transplant.

She has a small case packed. "If I get a call and they say 'be here in three hours' – which could happen – I'm off."

Looking to the future, Boyle appears philosophical. She smiles gently. "I  hope to be healthy. That's what I'm looking forward to. Career-wise, obviously … that would have to change. I've just got to concentrate, a day at a time, on getting better. That's as far as I can look."

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