British Liver Trust – The NEN – North Edinburgh News

Jessica celebrates dad’s good health with some fantastic fundraising

A nine-year-old girl from Edinburgh who decided to run the Edinburgh Marathon Festival junior 2K in support of her dad while he was awaiting a liver transplant, is celebrating as he has now received his life-saving transplant and she has smashed her fundraising target with two months to go! 

Jessica Elliot’s dad, Calum, was diagnosed with autoimmune hepatitis when he was 12. His condition was controlled with medication, and it didn’t stop him pursuing a career in professional football.  

It was last year, while he was manager of League Two’s Bonnyrigg Rose, that he began to develop other symptoms such as jaundice and extreme fatigue and at his wife, Lindsay’s insistence, he consulted his doctor and was referred for tests.

These revealed that he now also had another rare liver condition, primary sclerosing cholangitis, and within months he was on the waiting list for a liver transplant. 

“This came as a huge shock,” says Lindsay. “This was a fit man who had spent his whole life in sport. Being listed for an organ transplant at the age of 38 was not something which had ever crossed our minds. 

“We had to let the children, Jessica nine, Olivia eight and seven-year-old Calum Jr, know why daddy was spending so much time in hospital without worrying them, so we explained that his liver was making him poorly and he needed a new one. It was Jessica’s idea to do the Edinburgh 2K in support of her dad. She’d done it last year and really enjoyed it, so she said she wanted to do it again but ‘for livers this time!’ 

“At the time, we were getting a lot of useful information from the British Liver Trust, both regarding Calum’s condition and his forthcoming transplant, so raising money for the charity sounded like a brilliant idea. 

“The last few months have been a real rollercoaster. We had three calls to tell us that a donor liver had been found for Calum, but when we got to hospital, for various reasons the surgery could not go ahead. Finally in January, we got the call we’d been waiting for. The transplant took place and after some initial rejection, it looks like it has been a success, so life is slowly returning to normal. We will forever be grateful to that family who made such a generous decision at such a difficult time. 

“It’s great knowing that Jessica’s fundraising will help other families who find themselves in this situation. She was initially so nervous that she wasn’t going to meet her £500 target, but she doubled it in her first day. Now we’re up to £1280 and it’s still climbing!  She’s so proud and excited, she can’t wait for the race now.

“And having seen the transformation in her daddy over the past few weeks, she tells us she wants to be a liver surgeon when she’s older, so watch this space!” 

Dan Painter, Public Fundraising Manager at British Liver Trust, commented: “As a charity, we are leading the fight against liver disease and liver cancer. We reach over two million people each year; providing information and support to patients and families and providing vital advice to help people improve their liver health. 

“But there is still so much to be done. Liver disease is the only major disease in the UK where death rates are rising, and we want to change that. Jessica is an absolute star for taking on the Edinburgh 2K and raising such a fantastic amount. 

“We’re so grateful to her and we hope that she had her family really enjoy the day!” 

 You can support Jessica at Lyndsay Bell is fundraising for British Liver Trust. 

Lara’s winter runs bring in over £500 for British Liver Trust

When days get shorter and temperatures drop, the natural inclination for most of us is to stay indoors and keep warm. Lara Campana, however, decided it was time to set herself the challenge of keeping active and outdoors by taking on two fundraising runs and raising £582 for the British Liver Trust!

“I’m one of the co-founders of Resolution Theraputics, based at Edinburgh University and have worked in liver disease research for over 10 years now.

I’ve seen first-hand the challenges and stigmas which patients in this community and their families endure. The British Liver Trust is there advocating for them, day in and day out; they are amazing partners to help people navigate this scary disease. So, when I took on a winter fitness challenge, it made perfect sense to support their work at the same time.”

Lara opted for two races, the Forth Road Bridge 5K in November and the Edinburgh 10K on December 7.

“I love being outside in all weathers, but it didn’t stop me catching back-to-back chest infections which have made training slightly more challenging!” she says. “However, I’m really pleased to have completed both runs and to have smashed my fundraising target!”

Audrey Cornelius, Director of Fundraising at the British Liver Trust said: “As a charity, we are leading the fight against liver disease and liver cancer. We reach over two million people each year; providing information and support to patients and families and providing vital advice to help people improve their liver health.

“But there is still so much to be done. Liver disease is the only major disease in the UK where death rates are rising, and we want to change that.

“So we’re very grateful to Lara for braving the cold and taking on these two runs – we hope she enjoyed the experience!”

You can still support Lara’s fundraising at Lara Campana is fundraising for British Liver Trust

Roadshow comes to Edinburgh to find those ‘unaware’ they have liver damage

Members of the public in Edinburgh are being encouraged to get their liver checked for free at The Mound Precinct, EH2 2EL on Tuesday 13th June with the arrival of a mobile liver screening roadshow.

One in ten adults in Edinburgh may be walking around with liver disease and be completely unaware because there are usually no symptoms in the early stages, warns the British Liver Trust.

People can go along to the mobile unit from 10am to 4pm to find out what preventative measures they can take to keep their liver healthy and be offered a free liver scan.

Nine in 10 cases of liver disease are preventable with the main causes being alcohol, obesity and viral hepatitis.

Pamela Healy, Chief Executive of British Liver Trust, said, “One in three of us are at risk of liver disease and the numbers of people being diagnosed have been increasing at an alarming rate. 

“Liver damage develops silently with no signs or symptoms and people often don’t realise they have a problem until it is too late. Although the liver is remarkably resilient, if left until symptoms appear, the damage is often irreversible.

“The Love Your Liver  roadshow is a great opportunity for people to find out their risk of liver disease. Approximately 20% of the people we scan need to have further checks.”

The British Liver Trust’s Love Your Liver campaign focuses on three simple steps to Love Your Liver back to health:

1.    Drink within recommended limits and have three consecutive days off alcohol every week

2.    Cut down on sugar, carbohydrates and fat, and take more exercise

3.    Know the risk factors for viral hepatitis and get tested or vaccinated if at risk

The roadshow comprises a mobile unit where people can take a free online screening test and find out if they are at risk. Free liver health scanning will also be available using a non-invasive device. There will be expert guidance on how to keep your liver healthy from healthcare professionals who will be on hand to provide advice on diet, exercise and healthy living.

In addition to the roadshow in Edinburgh, the mobile unit will also be stopping at:

Aberdeen: St Nicholas Street, AB10 1BF – Sunday 11th June
Dundee: City Square, DD1 3AJ – Monday 12th June

If you can’t attend this event you can still find out if you are at risk and check your liver health online by doing the online screening test at:

 https://www.britishlivertrust.org.uk/screener

Love Your Liver roadshow coming to Edinburgh next week

‘Love Your Liver’ campaign – Network Rail Doncaster

One in five adults in Scotland may be walking around with liver disease and be completely unaware because there are usually no symptoms in the early stages, warns the British Liver Trust.

The Love Your Liver mobile screening and scanning unit will be visiting six locations disease across Scotland between 15th to 20th May 2022.

Members of the public are invited to the Love Your Liver roadshow at the following locations where they can assess their risk of getting liver disease, find out what preventative measures they can take to keep their liver healthy and be offered a free liver scan.

Inverness Falcon Square, Eastgate Shopping Centre, IV2 3PP Sunday 15/5/22

Perth High Street (outside Debenhams), PH1 5UL Monday 16/5/22

EDINBURGH

Mound Precinct, EH2 2EL Tuesday 17/5/22

Scottish Parliament, Holyrood, EH99 1SP Wednesday 18/5/22

Glasgow Argyle Street (outside Superdrug), G2 8AG Thursday 19/5/22

Ayr Heathfield Retail Park, KA8 9BF Friday 20/5/22

Pamela Healy, Chief Executive, British Liver Trust, said, “One in three of us are at risk of liver disease and the numbers of people being diagnosed increased at an alarming rate during the pandemic.

“The Love Your Liver roadshow is a great opportunity for people to find out their risk of liver disease and the first one hundred people to attend will receive a free non-invasive scan. Approximately 20% of the people we scan need to have further checks.”

The British Liver Trust’s Love Your Liver campaign focuses on three simple steps to Love Your Liver back to health:

Drink within recommended limits and have three consecutive days off alcohol every week
Cut down on sugar, carbohydrates and fat, and take more exercise
Know the risk factors for viral hepatitis and get tested or vaccinated if at risk.

The roadshow comprises a mobile unit where people can take a free online screening test and find out if they are at risk. Free liver health scanning will also be available using a non-invasive device.

There will be expert guidance on how to keep your liver healthy from healthcare professionals who will be on hand to provide advice on diet, exercise and healthy living.

Anyone wishing to take advantage of these free events should attend between 10am and 4pm.

If you wish to be scanned please arrive early as places are limited.

If you can’t attend the event you can still find out if you are at risk and check your liver health online by doing the online screening test at:

 https://www.britishlivertrust.org.uk/screener

Liver disease diagnosis in Scotland ‘is a postcode lottery’

New research published today in a leading GP journal shows that large parts of Scotland do not have an effective way of identifying people with liver disease, resulting in late diagnosis.

The research, produced from a survey undertaken by the British Liver Trust, used a Freedom of Information request, and shows for the first time how many areas across the country have little or no formal structures in place for detecting and managing liver disease and liver cancer.

The mapped survey results (see below) also show huge swathes of the UK (marked in red) do not have any effective patient pathway in place. This is in sharp contrast to other chronic conditions such as diabetes and heart disease, where patients receive standardised care.

Figure 1 Areas in red have no pathway in place. Amber denotes areas with a partial pathway or pathway in development. Green areas have a full pathway in place. Areas in black did not respond.

Three quarters of people in the UK are currently diagnosed when it is too late for effective intervention or treatment and one in four people diagnosed late in hospital sadly die within a couple of months.

The charity is now calling for earlier detection of liver disease and better patient care across all regions of the UK to be prioritized, and is working to influence healthcare commissioners.

Dr Helen Jarvis, Clinical Advisor for the British Liver Trust and lead author of the research, says: “Anyone who has liver disease, or is at risk of getting it, should get the medical care and advice they need no matter where in the country they live.

“The publication of this new data shows that, unfortunately, in the UK this is not yet the case. There are pockets of good practice, but there are also many areas that do not have a consistent approach to testing for and diagnosing liver disease. It shouldn’t be a postcode lottery.

“GPs and other healthcare professionals in primary care are doing a fantastic job under a lot of pressure, but in many areas, they’re working within a system that doesn’t allow them to detect and treat liver disease effectively.

“Unfortunately, many GPs also report a lack confidence and knowledge when it comes to managing the condition. Sadly, this means that in many cases, people with liver disease are diagnosed far too late when treatment options are limited. This had led to thousands of avoidable deaths.

“The liver is an incredibly resilient organ, but only up to a point. Symptoms of liver disease often only appear once damage has progressed and the liver is starting to fail. However, 90% of liver disease is preventable and, in many cases, it’s reversable if caught in time. That’s why early detection and prevention are key.”

Pamela Healy OBE, Chief Executive of the British Liver Trust, said: “Shockingly, deaths due to liver disease have more than doubled in the last 20 years and the condition is expected to overtake heart disease as the biggest cause of premature death in the UK in the next few years.

“Obesity, alcohol and viral hepatitis are the three main risk factors for preventable liver disease.

“We need to take urgent action to stop this silent killer in its tracks. Although the results of our research are very concerning, we do know that there are areas of good practice and that the changes we’re calling for are entirely possible and will save many lives.

“We now need to take what’s working well in those areas with good liver patient care and apply them in others so that every person with liver disease gets the best possible care, no matter where in the UK they live.”

Covid pandemic could lead to tens of thousands more liver disease cases in 2021, warns charity

The British Liver Trust is calling for every person in the UK to consider their liver health and take a simple quiz to assess their risk during January after adults across the UK admit to making unhealthy lifestyle choices in 2020.

Over a million adults in the UK may currently have the early stages of liver disease but are unaware and have no symptoms.^1,3. Worryingly, rising rates of obesity means that 150,000 children could also have non-alcohol related fatty liver disease.²

January is often a time that people take stock after the Christmas period but this year it is even more important as the numbers at risk have also increased during the Covid pandemic. Many people have increased their alcohol consumption and gained weight during lockdown – the two biggest risk factors for developing liver disease.

The British Liver Trust is calling for the nation to improve their liver health and find out more about the risk factors during National Love Your Liver month.

The charity has issued the stark warning after:

One in five adults are thought to be at risk due to either being overweight or drinking too much alcohol.³
4000 people in 2020 missed a free liver scan as the charities Love Your Liver Roadshow had to be cancelled.⁴
An analysis of previous years data indicates 650 of those would have shown signs of possible liver damage.
28% of people admitted to drinking more during lockdown.⁵
42% have gained weight during the past year.⁶

The British Liver Trust is urging people to take their ‘At Risk’ screening tool: https://www.britishlivertrust.org.uk/love-your-liver-screener

The charity is also launching a free new diet fact sheet which is packed full of tips on what to eat to improve your liver health:

Most liver disease can be prevented with simple lifestyle changes. More than 90% is due to three main risk factors: obesity, alcohol and viral hepatitis. The British Liver Trust’s Love Your Liver campaign focuses on three simple steps to improve your liver health: https://www.britishlivertrust.org.uk/love-your-liver-screener

Drink less than 14 units of alcohol and have three consecutive days off alcohol every week
Eat a healthy diet and take more exercise
Know the risk factors for viral hepatitis and get tested or vaccinated if at risk. There are now highly effective cures for hepatitis

Before the pandemic, the Love Your Liver roadshows helped to raise awareness of the risk factors for liver disease among the general population.

Vanessa Hebditch, Director of Policy and Communications at the British Liver Trust says: “In early 2020, our Love Your Liver health screening roadshow was ready to tour the nation, offering free liver health checks to the general public at high streets up and down the county.

“Unfortunately, Covid-19 forced us to postpone the roadshow. That meant that around 4,000 people will have missed out on a free liver health check. If we look at the statistics from previous Roadshows, around 650 of those would have shown signs of possible liver damage.

“We are very concerned that while thousands will have missed out on valuable liver health advice, some of those people will already have undiagnosed liver disease which won’t show symptoms until the very late stages when treatment options are limited.

“2020 was a really stressful year for everyone. We know from our research that a lot of people drank more alcohol and ate unhealthier food last year – two major risk factors for liver disease. We also know that some people have missed out on appointments and treatment while healthcare resources have been diverted elsewhere as a result of the pandemic.”

Beth came to a Love Your Liver roadshow in 2019. She says: “I wasn’t sure what state my liver would be and it has always concerned me as I have often used alcohol to relieve stress throughout my life.

“I was nervous going in for the test when I saw the roadshow but knew that I needed to know the truth of what I was doing to my liver.

“It does take guts to have a liver scan and it was good to know the result gave me a chance to reflect and take some steps in my life to be stronger willed in making healthier choices.”

Eating-Well-factsheet-FINAL Download

Over a quarter of people with liver disease say they were diagnosed too late, survey reveals

Over a quarter of people with liver disease in Scotland say they were diagnosed too late, survey reveals

26% of people with liver disease in Scotland said they were diagnosed late, by which time there were very few treatment options and the disease had progressed, a survey carried out by leading liver charity, the British Liver Trust, reveals.

The largest ever UK survey of over 2,000 liver patients also showed that in the region:

· 18% of people said their condition was dismissed as nothing to worry about when they were first seen by a medical professional.

· 15% of patients were very unsatisfied with the medical care they had received.

· Over half of liver disease patients had no signs or symptoms of a liver problem before diagnosis.

The survey also shows that in the UK:

· A third of patients were diagnosed after being tested for another condition

· Tiredness, abdominal pain and itching were the most common symptoms experienced by half of respondents

· More than half felt they were given not enough or no information upon diagnosis

· 22% of patients waited more than six months before being referred to a specialist

Experts are warning that late diagnosis of liver disease is causing a liver disease crisis across the UK, denying many of these people the chance of getting the best possible treatment. Evidence shows the earlier a patient is diagnosed, the greater their chance of survival.

Professor Stephen Ryder, Consultant at Nottingham University NHS Trust said: “We need to be diagnosing people with liver disease at a much earlier stage in primary care. We have equipped GPs with a very poor test for diagnosing liver disease – Liver Function Tests (liver enzymes).

“Repeat testing of liver enzymes just wastes NHS money and does not provide early diagnosis. We now have excellent tests for liver scarring, the process which matters in the liver, and those tests should now be universal in primary care.”

Over 14,000 people will die from liver disease this year – more than 40 people a day. It is the third biggest cause of premature mortality and it’s the only major disease increasing year on year.

Pamela Healy, Chief Executive, British Liver Trust said, “The UK is facing a liver disease crisis. Liver problems often develop silently as patients do not tend to experience symptoms until the disease has progressed. This survey highlights the shocking number of people who are diagnosed late and who do not feel they are receiving the care they need.

“The survey also highlights the need to help people understand how to reduce their risk of liver damage to address the increase in deaths from liver disease. Although the liver is remarkably resilient, if left too late damage is often irreversible.”

The British Liver Trust is the largest UK charity for all adults with liver disease. Their national awareness campaign, Love Your Liver, aims to raise awareness of the risk factors for liver disease and includes a roadshow that stops in locations across the UK offering free liver screening and scanning.

The Love Your Liver campaign focuses on three simple steps to Love Your Liver back to health:

· Drink within recommended limits and have three consecutive days off alcohol every week

· Maintain a healthy weight by eating well and taking more exercise

· Know the risk factors for viral hepatitis and get tested or vaccinated if at risk

To find out if you are at risk visit www.britishlivertrust.org.uk/screener

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Perk up your liver!

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