'They said I must be on drugs' - Leigh woman recalls liver disease diagnosis plight
New research shows the North West is a postcode lottery when it comes to getting a quick diagnoses
A woman from Leigh has told us how at one point she was accused of taking drugs whilst trying to get a diagnosis for a rare type of liver disease.
Tasha Young was finally diagnosed with Autoimmune Hepatitis, a rare condition that causes your own immune system to attack your liver, in 2011 but getting to that point was no easy feat.
"I suffered for about 18 months before I got a diagnosis," Tasha said.
"It's difficult to pinpoint the symptoms, it's generally feeling unwell, nausea, tiredness, abdominal pain."
When going for an appointment to see her GP, she said her concerns were dismissed.
"They were saying it's a pulled muscle or a cracked rib, she's just a teenage girl and she doesn't want to go to school."
Tasha, at the time just 15, had to be referred to a specialist team that dealt with the rare condition normally found in adults. At the time she was told there were only three of their kind in the country.
"That was about 70 miles away so it was a lot of back and forth at first."
"It took a long, long time to get that diagnosis."
In one instance during a visit to the hospital, doctors declared that the only reason she would be experiencing such symptoms was due to drug abuse.
During an appointment for a biopsy to confirm doctors suspicions that Tasha was suffering from Autoimmune Hepatitis she was shocked to be accused of taking illegal drugs.
"I wouldn't say boo to a goose in high school, I was terrified, there was no way I would use illegal drugs, it was due to the aggressive form of my condition.
I remember him coming into the bay with two nurses and he said we've no explanation for this, the only explanation is that you are using illegal drugs.
He was straight to the point, it wasn't a question it was a statement in his mind.
My Dad was with me at the time and he was shocked and angry, as was I.
I was 15, I hadn't put a foot out of line, I went to school, did my homework and came home, I didn't even go out with friends that much.
To be accused of taking illegal drugs was a big thing.
It took both myself and my dad and the transplant nurses to convince him otherwise."
Liver disease diagnosis is 'postcode lottery'
This comes as new research shows that large parts of Lancashire 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 shows how many areas have little or no formal structures in place for detecting and managing liver disease and liver cancer.
The mapped survey results show huge swathes of the country 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.
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.
'Thousands of unavoidable deaths'
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 of 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.”
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.”