Liver disease has changed over the years but my commitment to reducing deaths hasn’t.
I’ve had a fascination and passion for treating and preventing it since I was a medical student, training at the Royal Free School of Medicine under Dame Professor Sheila Sherlock who was the founder of liver disease as a speciality.
As a junior doctor I worked on both medical and surgical liver units, assisting in the first transplant conducted at the Royal Free when liver transplantation in the UK was in its infancy.
I vividly remember the terrible suffering of patients with end stage liver disease, coming in as an emergency, vomiting vast quantities of blood from oesophageal varices or with huge pregnant looking bellies distended with ascites which had to be drained. Patients were restricted to drinking very small quantities of water and eating virtually no salt. Others suffered psychoses or coma and then multiple organ failure resulting from their end stage liver disease.
In those days we didn’t wear gloves because we didn’t want to upset patients and make them feel untouchable. Hepatitis C had not yet been discovered and our options were very limited.
Since then, we know about Hepatitis C, Hepatitis B can be subtyped there are new treatments for both. There are 600-700 transplants per year and liver disease has gone from being a rare disease to one seen frequently in every hospital and general practice.
But though treatments have improved we have to tackle the increase in disease which is mainly preventable. There are also large inequalities in liver disease – it is a no brainer that as a Public Health Physician, I see that we should be making a concerted effort to reverse these trends.
Here are some hard facts:
- Liver disease is the only major cause of mortality and morbidity which is on the increase in England, whilst it is decreasing among our European neighbours
- Over a decade the number of people dying with an underlying cause of liver disease in England rose by 40% from 7,841 to 10,948
- Most liver disease deaths are from cirrhosis (a hardening and scarring of the liver) or its complications - people die from liver disease at a young age with 90% under 70 years old and more than 1 in 10 in their 40s
- Liver disease is the third biggest cause of premature mortality and lost working life behind ischaemic heart disease and self-harm
- Most liver disease is preventable - only about 5% of deaths are attributable to autoimmune and genetic disorders - over 90% are due to three main risk factors: alcohol, viral hepatitis and obesity
- It’s a disease of inequalities. Mortality rates from liver disease in people aged 75 years and under varied significantly by Primary Care Trust. People who live in the most deprived fifth of areas in England are more likely to die from liver disease than those who die in the most affluent fifth.
- Liver disease, and death from it, is associated with stigma mainly because of the risk factors. This sometimes makes it hard for the patients to access care and hard for the families especially in bereavement
- 70% of patients with liver disease die in hospital and while one in five of those who die have had five or more admissions to hospital in the last year of life one in five are admitted only once and die in that first admission and 4% die in A&E without getting admitted to hospital. This reflects the often dramatic complications accompanying death from liver disease
With these statistics in mind it’s unsurprising that liver disease has received a high profile over the past few years. In 2014, The Chief Medical Officer devoted a chapter to liver disease recommending a need for preventative measures involving a combination of public health policy initiatives and increased awareness of liver health and the risk factors for liver disease among the public.
The All Party Parliamentary Hepatology Group Inquiry into Improving Outcomes in Liver Disease produced their report ‘Liver Disease: today’s complacency, tomorrow’s Catastrophe’, earlier this year. The Lancet also launched a commission on Liver Disease which will publish its findings and recommendations this autumn.
Following a meeting between the chairs of the APPG, liver charities and PHE, independently it was agreed that PHE would produce a framework outlining its scope of activities to tackle liver disease. I am leading the co-ordination of this framework which will involve input from colleagues across all PHE departments and directorates, as well as input from the liver charities and Directors of Public Health in local authorities. PHE has extensive programmes of work to tackle all three major risk factors; alcohol, viral hepatitis and obesity.
On the 20th October, PHE will publish Liver Disease Profiles for local authorities in England. These will support the work of Health and Wellbeing Boards and Joint Strategic Health Needs Assessments by providing vital information about liver disease prevalence in their areas.
The challenge will be significant. Liver disease develops silently and obvious signs and symptoms may only appear when changes are irreversible, therefore the identification of people with risk factors for liver disease in primary care is a critical first step in the pathway.
Many patients come from marginalised groups with unstable accommodation, many don’t speak English and many may have difficulty attending or sticking to treatment because of addiction to alcohol and or drugs.
2 comments
Comment by Bren posted on
Hello Julia,
A really great blog and thank you.
I note from your blog that today is the day for the profile for liver disease for local authorities will be published and I will certainly take a look at this.
I am sure, through your resilient efforts and focus the co ordination produce a framework outlining its scope of activities to tackle liver disease will be action based and meaningful. Could I suggest that, in addition to the cited people you are involving you look to directly involve patients, carers, friends and families who I believe will make this framework for action even more meaningful and focused. I think you may well get this view through charities, but I believe that coming direct from people, who may not be part of a charity/formal; structure is vital.
Bets wishes,
Bren.
Comment by Paul Desmond posted on
The APPG on Hepatology needs an education like most of the NHS about how to cope with liver disease, I feel it has forgotten since we stopped doing its secretariat. With a million undiagnosed HBV and HCV cases causing our liver disease boom exactly as predicted by us to the Group in 1999 and 2002 and 2004
We still have no national interest in using the recommended curative liver disease approaches. We decided in 1999 to watch liver disease double when we "forgot" hepatitis testing. Until we notice how the EU is lowering liver disease with vaccinations and blood tests tens of thousands will continue to die in ignorance. Hepatitis takes 4 years of 21 units to cause cirrhosis not 64, it can quickly do a lot more harm than alcohol ever does.. Prevention is quite impossible for the 1 in 3 humans who have been exposed to HBV and HCV,