Liver cancer patient survey findings

Posted on: 19th October 2021

A huge thank you to everyone who shared their experiences of liver cancer with us in our patient survey this September.

The results provide a unique insight into the experiences of people with liver cancer. This will help us campaign more effectively on behalf of everyone with the condition and provide support services to meet their needs.

The British Liver Trust will use the results of this survey when talking to policy-makers, politicians and the media to continue to raise awareness of liver cancer and campaign for better support for patients.

By October 2021, 107 people had completed the survey which revealed that:

Diagnosis

  • Half of respondents said they had not been previously diagnosed with liver disease at the time they were diagnosed with liver cancer. (Most people who develop liver cancer also have underlying liver disease, so this suggests that many patients had an underlying liver condition that they were not aware of before they were diagnosed with cancer).
  • More than one in ten (13%) said their liver cancer diagnosis began with a trip to A&E because of symptoms.
  • One in five (21%) said it took more than six months to get a liver cancer diagnosis after their first visit to the GP.

Symptoms

  • The most common reported symptoms were tiredness/fatigue (68%), abdominal pain (64%), and abdominal swelling (48%).

Treatment

  • Nearly half of respondents (45%) said they asked their doctor for other treatments they had researched that were not initially offered.
  • Half of patients (49%) didn’t have treatment at their local hospital and over half (55%) said they travelled 20 miles or more for their treatment.
  • Three quarters of patients did not know that they could choose their consultant.
  • 1 in 5 were not happy with the information they received about treatment options.
  • Most people (86%) said they were treated with dignity or respect most or all of the time.
  • 44% respondents said they have experienced delays in accessing care since their diagnosis.
  • Half (51%) said the COVID-19 pandemic has affected their care.

When asked about the positive aspects of their care, many patients said they valued the professionalism of the nurses and doctors who looked after them. However, when asked about any negative experiences, some patients mentioned the long distance they had to travel to appointments, delays they had experienced with appointments and poor communication of diagnosis and treatment options.

Vanessa Hebditch, Director of Policy and Communications at the British Liver Trust, says: “We were delighted that so many people with experience of liver cancer took the time to complete our survey. The findings shine a light on many of the positive aspects of liver cancer patient care and also some of the challenges that many patients face.

“Liver cancer is a devastating disease for anyone affected. Treatment options are limited and outcomes are generally poor because often the condition is often diagnosed at a late stage. We are determined to change this and improve the care that people with liver cancer receive - the patient voice is a vital part in making this happen.”

If you or a loved one has liver cancer, and you’d like to share your experiences with us, you can still complete the survey here.

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