Who took part in the survey?
The survey had 2023 respondents – 17% of whom had not heard of the British Liver Trust prior to completing the survey.
What type of liver disease do they have?
We asked patients ‘What type of liver disease or liver cancer do you have?’ Patients’ responses included all of the main types of liver disease. The largest number of responses (25%) were received from people with NAFLD followed by alcohol-related liver disease (16%).
How old are they?
The majority of respondents have had liver disease between 5 and 10 years. The median age at the time of answering the survey was 55.
The average age of diagnosis of those with NAFLD was much higher than those with alcohol-related liver disease.
Where do they live?
Respondents came from across the UK with a good geographical spread.
Survey findings
Key Findings
- Almost half (49%) had no symptoms prior to diagnosis
- One in five (21%) patients were diagnosed in hospital
- Almost one third (32%) were diagnosed due to a test for another condition
- Only 4% were diagnosed by tests by their GP due to lifestyle factors
- 50% were diagnosed when they already had symptoms and one out of five of these were diagnosed in A&E
- 25% of people felt that they were diagnosed very late at a point where there were very few or no treatment options
- 59% of people did not feel that they were given enough information at diagnosis
- Almost four out of ten (39%) patients waited for more than six months to be referred to a specialist
- When asked to rate their overall satisfaction with care (where 0 is not at all satisfied and 100 is completely satisfied) the mean score was 60
- A quarter (24%) of patients were extremely satisfied with their care (scoring between 90 and 100) and one in 10 (10%) people were extremely unsatisfied (scoring between 90 and 100)
- Nine out of ten people tried to find out more after leaving their clinic appointment with over 90% of these looking on the internet
Findings by topic
Symptoms and diagnosis
Half (49%) of patients had no symptoms before their diagnosis:
Of those who did have some symptoms the most common symptoms are fatigue and abdominal swelling:
The reported symptoms varied according to aetiology or disease type:
How were patients diagnosed?
The chart below shows how patients with different types of liver disease were diagnosed. Patients with NAFLD or NASH were more likely to be picked up by a general medical or test for another condition. Those with Hepatitis B and AIH were the most likely to be picked up due to their symptoms.
Information at diagnosis
59% of patients were either given not enough information at the time of diagnosis or none at all:
Diagnosis in primary care
We asked patients what happened after they were diagnosed in primary care:
- 18% felt they were dismissed by their GP and told that there was nothing to worry about (grey)
- 6% were sent home with some medication to relieve symptoms without any further investigation (orange)
- In 37% of cases the GP undertook further tests to try to establish the cause (yellow)
- 39% of people were referred immediately to secondary care (blue)
The chart below shows what happened after patients were diagnosed in primary care according to disease type:
Experience at diagnosis
We asked patients to tell us how much they agreed or disagreed with the following statements specifically relating to their diagnosis:
More than a quarter that they had been given their diagnosis in a sensitive manner
38% of people did not feel that their diagnosis was explained clearly
34% of people felt that they had been diagnosed early
A quarter of people felt that they had been diagnosed very late
Referral to secondary care
We asked patients how long it took from when they were diagnosed until they were referred to a gastroenterologist or liver specialist at the hospital:
Almost four out of ten patients (39%) waited for more than six months for a referral.
Those with NAFLD and PBC had the longest wait for a referral, whilst those with AIH and alcohol-related liver disease were referred much more quickly.
However, those with alcohol-related liver disease were also more likely to be diagnosed late as an emergency (see below).
Patients’ understanding of their condition
We asked patients to rate how well they understood their condition and treatment after they had been referred to specialist care, where 1 was ‘did not understand at all’ and 100 was ‘completely understood’:
The mean score was 51.
Satisfaction with medical care
We asked patients to rate how satisfied they were overall with their medical care, where 1 represented completely unsatisfied and 100 totally satisfied:
The mean answer to this question was 60.
The spread of answers is shown below:
A quarter (24%) of patients were extremely satisfied with their medical care since first being diagnosed with a liver condition (scoring between 90 and 100). One in ten (10%) people were extremely unsatisfied (scoring between 90 and 100).
Of all the disease types, NAFLD had the greatest proportion of people who were less than satisfied with their medical care. Satisfaction levels were highest amongst patients with AIH.
People were least satisfied with their medical care in Wales, Yorkshire and Humber and North West England. Those who were most satisfied came from East of England, Northern Ireland and North East England.
How did patients find out more?
The vast majority of people (92%) looked for further information and 92% of these people turned to the internet.
It is therefore vital that clinicians signpost to credible sources of additional information.
Qualitative data - comments from respondents
The survey also supplied a rich source of qualitative data with over 700 open text responses.
These responses are not reflective of the survey as a whole, as a large proportion are negative. The few positive comments are almost exclusively from transplant recipients or those being treated at one of the transplant centres. Many of the comments go into detail, naming specific situations and hospitals and therefore cannot be shared. However, there are a number of common themes:
Need for more psychological support/lack of awareness by medical professionals of the mental health impact
More support is needed to help with the psychological and health & wellbeing side of liver disease. Often after diagnosis it can be a scary time, there can be much unknown and approaching transplant stage I was offered no support in the form of counselling if I needed it, by my hospital. This was a service I felt all transplant centres should offer, care was otherwise excellent but this area they fell short on.
Terrifying. No mental health offered or possible MH meds available.
The mental side is completely underestimated by healthcare professionals. I was agitated, angry and depressed. I was also in total denial of how dire my situation was.
Late diagnosis
The GP failed to do a simplified set of blood tests where my ALT would have alerted to a physiological condition rather than the assumed final year burnout. It took 3 long years to turn yellow. I am male and now have advanced liver disease.
I was not told the extent of my NAFLD and now it’s too late. I can’t be listed for a transplant.
My first experience of hospitalisation due to jaundice didn't lead to a diagnosis, it was about 5 years later when I got jaundice again, hospitalised, moved around hospitals, sent home, seen in clinics for another couple of years before I got the same diagnosis a couple of times running.
Lack of sensitivity by healthcare professionals and stigma
I am yet to see a specialist and have PBC. My GP did not know anything about this disease, and in fact contradicted some things that were on the information given to me (print outs). I feel my condition is progressing but am yet to start any medication, My GP just said don't worry and sent me away! I have an appointment in 3 months with the consultant but feel really scared at the moment.
My GP forgot to contact the hospital, when she did they spent 7 months arranging an appointment so at the end of the 11 months I was very ill. I’ve been treated like dirt by the consultant, the NHS and I had to work out my own diagnosis from the internet.
Lack of specialist help, information and support
I wish there was more support in this area e.g. specialist nurse involvement, time allowed to go through things. It's like being given a diagnosis of cancer with none of the support and is not so easy to be open about. More screening for liver disease is needed so things aren't picked up at such advanced stages.
If I had HIV I’d have a supportive team to work with me - with liver disease I haven’t even seen a doctor for 9 months and when I do he tries to make me feel like scum.”
My LFTs haven’t been in range for years. I’ve been feeling tired and low. I get should pain and nausea but I worry about sounding like a hypochondriac with the consultant. Being misdiagnosed with NAFLD wasn’t a surprise but showed aforementioned duct changes and possible PBC which came as a surprise but explains the tiredness. I wish I’d been given more info.
Lack of information on diet
I can't find what I am looking for in the way of diet information. No one is able to help me and my GP has no idea.”
I’m trying to follow a low fat a diet as I can but have had no information given me or been referred to a Dietician. Then someone else told me to have a high fat diet with no carbohydrate so I feel really confused.
Would like more info on diet. It’s really unclear.
Lack of aftercare after a transplant (although others praised the care)
No after care after transplant.
I had a liver transplant and the aftercare was not good and I ended up with complications.
What we have learned from the survey
Whilst there are clearly areas of excellent practice and many patients are very satisfied with their care, there are significant areas where improvement is needed.
In particular, patients need improved information about their diagnosis and care so that they can take an active role in self-management.
The majority of patients look elsewhere for information following a diagnosis, with a large proportion searching for information online. It is therefore vital that they are signposted to other credible sources of information such as the British Liver Trust and that they are provided with frequent opportunities to ask further questions about their care.
The survey also mirrors findings of other studies which show that often diagnosis is at an advanced stage of illness. Policy-makers, commissioners and clinicians therefore need to ensure pathways are in place to facilitate early detection of liver disease.
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 disease and campaign for better support for patients.
Key take-home points for patients and clinicians
- Patients do not always understand what has been said to them in appointments and will look elsewhere. It is therefore vital that they are signposted to other credible sources of information such as the British Liver Trust and that they are provided with frequent opportunities to ask further questions about their care.
- Policy-makers, commissioners and clinicians need to ensure pathways are in place to facilitate early detection of liver disease.
- The survey mirrors much of the findings of other studies which show that often diagnosis is at an advanced stage of illness.
- We hope that healthcare professionals will reflect on the results of this survey when considering service improvement.
- Healthcare professionals may also wish to reproduce selected questions when doing localised surveys and use the results as a benchmark.
- The British Liver Trust will use these results when talking to policy-makers, politicians and the media to continue to raise awareness of liver disease and campaign for better support and care for patients.
