Call for better detection of liver disease in York

The British Liver Trust study is warning of a 'postcode lottery' in diagnosis across the UK.

Author: Benjamin FearnPublished 4th Aug 2021
Last updated 4th Aug 2021

Campaigners are calling for earlier detection of liver disease and better patient care across York and all regions of the UK.

It's as new research is warning of a 'postcode lottery' in identifying the condition early.

The British Liver Trust study, which can be found here, says: "Three quarters of people in the UK are currently diagnosed late 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."

Vale of York CCG is listed as one of the areas that the study claims doesn't have an effective patient pathway in place for treating the condition.

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 reversible if caught in time. That’s why early detection and prevention are key.”

Craig Kirby is from York and had a liver transplant in 2019. He told Greatest Hits Radio York that routine blood tests helped to first pick up his liver disease: "It noticed on the screening that one of my liver enzymes was slightly elevated. I knew at the time that I was drinking too much but I didn't see it as a red flag

"Over the next few years I was getting a test and seeing a liver specialist, and all we were picking up was the slightly elevated liver enzyme; I didn't feel ill or unwell in any way. I was a heavy drinker, and in 2018 I started to notice that the whites of my eyes were turning yellow.

"I arranged for another appointment and the liver specialist referred me to York Hospital pretty much straight away and I stayed there for just over a month. I was weaned off the alcohol to combat the liver disease that was so far advanced at that stage.

"Things got worse before they got better; ignoring the blood test as a warning sign was foolish on my part. It was lucky that York Hospital picked it up, and after the month there it was becoming clear that the liver was damaged pretty much beyond repair.

"More symptoms started showing themselves and I got a lot of fluid on my abdomen; they were draining about 20 litres every week from there. I was also getting some haziness in vision. They then started discussing the prospect of a liver transplant, and I knew it was very serious at that point.

"I was lucky that the consultants in York offered a top notch service because they'd originally worked at the transplant team at St James' in Leeds. It was a tough eligibility criteria to get on the transplant list; for them to even consider it I had to go six months without alcohol, which I managed to do.

"I had to go into hospital via ambulance several times as the condition got worse, and luckily the teams at A&E in York were able to look after me. When I was in hospital in May 2019 I was told about the possibility of getting a transplant at St James' in Leeds - I was rushed over where I had a transplant that night.

"It's just been about building my strength up since then and re-living the life that I had thrown away before I was given this opportunity. I'm a changed person and I don't drink now at all - it'll be my three year anniversary shortly from having my last drink and I don't miss it at all.

"I'm really glad for the support I've received from groups in York and friends in helping me to keep on the straight and narrow. I'm back working and as busy as ever, and have a dog which I enjoy taking out for walks!"

"I know that if I hadn't gone through with the procedure at Leeds I wouldn't be alive talking to you today".

Craig says routine blood tests should be more readily available to help others identify liver disease: "I was very lucky with consultants in York Hospital that were interested in this area and my GPs. Liver disease isn't just caused by alcohol - there are other reasons, too.

"If you feel you are at risk for whatever reason I would definitely speak to your GP and ask whether you can have some sort of blood test just to make sure your liver enzymes are okay.

"I found it quite an insidious disease in that it crept up on me - I did nothing about it when my blood levels were high until suddenly I felt very ill and others could see that".

Further stats on liver disease can be found here.

An NHS spokesperson from Vale of York CCG told us: "The NHS is committed to finding, supporting and treating patients with liver disease and liver cancer and are in the process of building on successful programmes of work – such as our hepatitis C elimination network – in order to accelerate early diagnosis of these conditions, as part of our Long Term Plan commitments."

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