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Sound the Alarm

Demand faster diagnosis of liver disease and liver cancer.

Demand faster diagnosis of liver disease and liver cancer.

Jacqueline's story

In December 2020 Jacqueline sadly passed away within days of being told that she had liver cancer.

Although she had been seen by a liver consultant more than a year before and had exhibited symptoms of a liver condition for much of 2020, very little was done to help diagnose her condition sooner.

Jacqui’s brother David shares her story:

“Jacqui had some awareness of liver disease from my medical history. I had previously had a liver transplant due to non-alcohol related fatty liver disease and, like me, she had a few health issues with type two diabetes and blood pressure as she got older, but nothing very significant.

Jacqueline

In July 2019, her health worsened, and due to  an onset of ascites (fluid retention), she was admitted to hospital for a week to have fluid drained. I don’t know what tests were done at that time but they just prescribed water tablets to treat the fluid retention. She was supposed to have a follow-up appointment, but this didn’t happen. If more tests had been carried out to determine the cause of the ascites, or investigate the history of liver problems in the family, maybe they would have spotted that something was more seriously wrong. Looking back, this could have been the first time that an opportunity to save her life was missed.

Had more tests been carried out at A&E, maybe they would have spotted that something else was wrong.

In early 2020 both Jacqui and her husband Bert had bad colds/flu symptoms, which in hindsight could have been COVID, but this was a bit before the virus was being talked about as being in the UK. 

In June 2020, during the first lockdown she tripped over a footstool as she got out of a chair and hurt her pelvis. She was reluctant to go to hospital due to COVID, but was in so much pain the next day that the family took her to A&E. Due to COVID restrictions, she had to go in to A&E on her own.  Despite the pain she was in and her history, the doctor who saw her did not even arrange for an X-ray but instead gave her painkillers, a walking frame and referred her to a fracture clinic the following week at a private hospital. The consultant at the private hospital was shocked that she had not been X-rayed or  considered whether she might get blood clots because she had fractured her pelvis. He wrote a letter of complaint about her treatment and Jacqui got a phone call from the hospital apologising and saying they were investigating her treatment. Had more tests been carried out at A&E, maybe they would have spotted that something else was wrong. 

Help us Sound the Alarm on liver disease and liver cancer.

By the time she had a follow-up appointment at the fracture clinic, she was getting over her fractured pelvis, experiencing  less pain and more mobility, but was having problems with ascites again and her water tablets were no longer working. She told the consultant that she was worried about her liver and he kindly wrote to her original hepatologist requesting an appointment.  Her GP increased her water tablets, but (despite the family chasing her GP) she never did get an appointment with her hepatologist. If this appointment had been offered, perhaps things would have been different. 

On the 24th November she was so ill that the family called 999 and she was taken to A&E again, obviously no-one could go with her or go in to see her because of the pandemic. At the hospital they drained 8.5 litres of fluid from her stomach and 2.5 litres from around her lungs. She was kept in and a scan was arranged for the following week. The scan found nodules in her liver and liver cancer was suspected. They were planning to do a liver biopsy later in the week, but when I rang my sister on her mobile on Wednesday she was talking about coming home for the weekend as the biopsy was postponed. On Thursday afternoon Jacqui took a turn for the worse and started being sick, bringing up blood and bleeding internally. The Hospital had to delay giving her a blood transfusion while they tried to stabilise her very high blood potassium levels.

The first I got to hear of her change in health was the next day, Friday afternoon (4th December 2020), when I got a call from my niece’s partner that Jacqui was critically ill and that I should get to the hospital as soon as possible. We were allowed to see her although she was very weak. The doctor explained that Jacqui had liver cancer which had spread to her lungs and she was losing blood. If they could stabilise her overnight they would try to stop the bleeding the next day, but she was too ill to operate on that night. I went home hoping that she would get through the night, but at about 9pm I got another call telling me to come straight back to the hospital. By the time I drove up the motorway it was just too late, she had died minutes before I arrived. Mercifully her husband, two children and their partners were with her at the end.

It all seemed far too quick. Less than two weeks in hospital, less than a week with diagnosed liver cancer, and a whole series of possible missed opportunities to diagnose that there was a problem earlier.”

Help us Sound the Alarm on liver disease and liver cancer.

Help us Sound the Alarm

Sound the Alarm on liver disease and liver cancer.

Lend your voice to those demanding faster diagnosis of liver disease.

Sound the Alarm is a campaign run by British Liver Trust.

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