British Liver Trust sounds the alarm on late diagnosis of liver disease

Posted on: 28th September 2020

A new campaign launches today to stop thousands of people with liver disease dying unnecessarily. One in four patients diagnosed in hospital with severe liver disease die within 60 days in England and Wales because of late diagnosis1.

The British Liver Trust is calling for much better awareness and proper treatment pathways to be put in place in primary care across the UK, and has launched a petition demanding these changes.

The new campaign, Sound the Alarm on Liver Disease, is urging the Government to transform care for those with liver disease, and improve early diagnosis to save lives.

The campaign is supported by the UK’s leading hepatologists and clinicians, and is endorsed by the British Association for the Study of Liver Disease and British Society of Gastroenterologists.

Professor Steven Ryder, Medical Advisor to the British Liver Trust, says: “Currently three-quarters of people with liver disease are diagnosed very late in a hospital setting2. At this stage, their condition is generally so advanced that there are few treatment options and transplantation is their only hope. Around a quarter of those patients die within 60 days. This has to stop.

“The tragedy is that, in most cases, these deaths could have been avoided with earlier diagnosis. The liver is a remarkable organ and can often repair or reverse damage if steps to do this are taken in time.

“We know that the changes that we are asking for are possible as there are pockets of excellent care for liver patients in some parts of the UK, but provision is patchy and many areas do not have anything at all in place to ensure that people with liver disease are picked up early. Care for liver patients shouldn’t be a postcode lottery. We need to sound the alarm and demand earlier diagnosis for all liver patients throughout the UK today.”

Sound the Alarm on Liver Disease is calling for three key changes to transform early diagnosis so that people with liver disease can be diagnosed at a much earlier stage and lives can be changed.

By signing the petition, signatories will be calling for:

  1. Every GP practice to have an agreed way of finding patients at risk, testing, following up and managing, and referring to secondary care when necessary.
  2. The NHS (over 40’s) Health Check in England and other regular checks across the devolved nations to be routinely used to find those at risk of liver disease.
  3. Automated processes to be put in place in primary care to identify those at risk of liver disease, to include the correct blood tests and to manage appropriate follow-up.

Pamela Healy OBE, Chief Executive of the British Liver Trust, says: “We know GPs are busy people and have lots of different conditions to consider – however by automating processes we know that those at risk of liver disease can be easily flagged up and targeted for intervention.

“At the British Liver Trust, we are all too familiar with the heart-breaking stories of people who have lost a loved one to liver disease before their time.

“Since 1970, deaths due to liver disease have increased by 400%, and one in five of us are currently at risk of developing a liver condition. The clock is ticking - we can’t afford to wait any longer. We must take action today to save lives in the future.”

Deborah was diagnosed with cirrhosis in hospital at 36 years old, just a few weeks after she got married. She says: “I was feeling tired and my husband noticed that the whites of my eyes had gone yellow, almost luminous like a cat’s eyes, so he phoned the NHS helpline and within two hours I was on the ward.”

There she was told that her liver had become so fatty and inflamed it was no longer functioning properly. “The doctor said that if I didn’t change my lifestyle, in six months I would either be dead or on the liver transplant waiting list.”

Luckily for Deborah, she had time to make the lifestyle changes she needed to. She says: “I did as I was told and changed my eating plan and joined my husband’s running club. At my six month check up I was told my liver was back to its normal size, no scarring, no cirrhosis and I didn’t need a liver transplant.”

Sadly, this is not the case for thousands of others around the UK who are diagnosed too late for treatment.

To support the campaign and sign the petition, please go to www.britishlivertrust.org.uk/petition.

Footnotes

  • Roberts et al, Early and late mortality following unscheduled admissions for severe liver disease across England and Wales, Aliment Pharmacol Ther. 2019 May; 49(10): 1334–1345.
  • William et al, Lancet Commission, DOI:https://doi.org/10.1016/S0140-6736(14)61838
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