We campaign on behalf of all people affected by liver disease and liver cancer ensuring your voice is heard where it matters most.
We work across the UK, engaging with parliamentarians and key policy-makers within the NHS to increase awareness and influence decisions that will improve care, treatment and outcomes for patients.
Liver disease is a major healthcare crisis that we must all do something about.
Mortality rates have increased 400% since 1970, and it is now the third leading cause of premature death in the UK.
Vanessa Hebditch, British Liver Trust
in this section & useful links
All Party Parliamentary Groups on Liver Health and Alcohol Harm
The British Liver Trust attends these groups and uses them as a forum to influence change on behalf of people with liver disease.
All-Party Parliamentary Groups (APPGs) are informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and organisations from outside Parliament in their administration and activities.
The All Party Parliamentary Group on Liver Health brings together stakeholders within the liver disease community to provide a forum with MPs and Peers to tackle the growing problem of liver disease and its causes and ensure that it remains high on the political agenda. Recent meetings include:
- Elimination of hepatitis C
- Tackling alcohol related liver disease
- Working with the APPG on obesity to tackle non alcohol related fatty liver disease ? including pressurising Government to restrict
marketing and advertising of unhealthy products
The All Party Parliamentary Group on Alcohol Harm promotes the discussion of alcohol-related issues, raises matters of concern and makes recommendations to Government and other policy-makers.
Recent meetings have focused on:
- The Government:s Alcohol Strategy
- Alcohol and inequalities
- Treatment service funding
The All Party Parliamentary Group on Alcohol Harm recently co-produced a new Alcohol Charter with the Cross-Party Parliamentary Group on Drugs, Alcohol and Justice. The British Liver Trust has signed up to the Charter, which sets out key policies that should inform the Government?s Alcohol Strategy.
Read the Alcohol Charter here: http://www.ias.org.uk/uploads/pdf/Alcohol%20Charter%20Digital.pdf
Campaigning on Liver Cancer
Liver cancer has very poor survival rates with only 12% of people surviving for five years.
The British Liver Trust has joined forces with six other charities to create the Less Survivable Cancers Taskforce, targeting the six overlooked and underfunded cancers with the lowest survival rates.
The Taskforce has set itself the target of doubling survival rates over the next ten years over the next ten years for liver, brain, stomach, lung, pancreatic and oesophageal cancers. Currently in England, the survival rate of less survivable cancers in just 14%, collectively we will work to ensure we double the survivability of these six cancers to 28% by 2029.
We are calling on the Government and NHS England to accept this target and collaborate with cancer charities to achieve it.
At the launch of the taskforce, Vanessa Hebditch, Director of Policy at the Trust said: “Now is the time to take action to transform the future for patients with these cancers and their families. We must look to the breast cancer and prostate cancer movements, and emulate their incredible successes in increasing research funding, and improving diagnosis and treatment.”
For more information read our cancer plan submission here: insert link here: http://lesssurvivablecancers.org.uk/wp-content/uploads/2018/09/Cancer-plan-submission-2018.pdf
There are many ways you can support the campaign including writing to your MP or signing a petition. Please vist here to find out more: http://lesssurvivablecancers.org.uk/help-us-close-the-gap/member-of-public/
The British Liver Trust sits on a number of bodies with NHS Blood and Transplant (NHSBT) and healthcare professionals to help promote all aspects of organ transplantation and ensure equity of access and best outcomes for all patients requiring a liver transplant.
We regularly review and assess progress on liver transplantation. The most recent NHSBT report covers ten years of transplant data, from 1 April 2007to 31 March 2017. The report presents information of patients on the transplant list, number of transplants, demographic characteristics of donors and transplant recipients, and survival post registration and post first liver transplant. The data are reported both on a national and centre-specific basis, where relevant.
The Trust successfully campaigned for a new opt-out system for organ donation in England which is expected to come into effect in spring 2020. This will mean consent for organ donation after death is presumed unless the person has opted-out.ÿ Wales already has an opt out system which has resulted in increased numbers of donor livers. NICE and the SMC? improving healthcare for liver patients
Action on alcohol
Over 7000 people die from alcohol related liver disease each year.
Over 7000 people die from alcohol related liver disease each year. The British Liver Trust plays a key role in the work of the Alcohol Health Alliance, an alliance of 50 non-governmental organisations that work together to promote evidence-based policies to reduce the harm caused by alcohol.
Members of the AHA include medical royal colleges, charities, patient representatives and alcohol health campaigners.
By working together, we have greater influence. As part of the Alliance we:
- highlight the rising levels of alcohol-related harm
- propose evidence-based solutions to reduce this harm
- influence decision-makers to take positive action to address the harm caused by alcohol
The Trust is campaigning for the UK Government to introduce a comprehensive, evidence-based alcohol strategy, to address the harm alcohol causes. Our top ten recommendations of what needs to be included in an Alcohol Strategy are outlined in our report Health First: An evidence-based alcohol strategy for the UK. (need link for this)
The Trust is a member of the Lancet Liver Commission. The Lancet Liver Campaign makes specific recommendations to reduce unacceptable premature mortality from liver disease in the UK. In particular:
- The need for much earlier detection of liver disease by GPs.
- The need for equitable effective liver services for all, at the moment there is a postcode lottery for patients with liver disease with many being unable to access specialist care.
- Stronger leadership from the Government to tackle the underlying causes of the dramatic increase in liver disease, alcohol misuse and obesity.
Leading liver clinicians, researchers, policy makers and charities including the British Liver Trust hold regular meetings and produce a peer-reviewed report each year which is published in the Lancet, the leading world renowned medical journal.
Addressing liver disease in the UK: a blueprint for attaining excellence in health care and reducing premature mortality from lifestyle issues of excess consumption of alcohol, obesity, and viral hepatitis provides the strongest evidence base through involvement of experts from a wide cross-section of disciplines and makes ten firm recommendations to reduce the unacceptable premature mortality and disease burden and to improve the standard of care for patients with liver disease.
Implementation of the Lancet Standing Commission on Liver Disease in the UK (link to 2015 report attached) outlined key progress that had been made, for example with Hepatitis C, but also highlights the urgent need for more to be done.
2016 Lancet: New Metrics for the Lancet Standing Commission recommends specific monitoring of a range of different liver disease areas and methods for improvements, asks for a national review of liver transplantation and highlights the need for improved awareness of liver disease including the prevalence, symptoms and causes, in the general population and within the NHS.
2017 Lancet: Disease burden and costs from excess alcohol consumption, obesity, and viral hepatitis indicates that liver disease is set to overtake ischaemic heart disease as the leading cause of premature mortality in the next two years.
2018 Gathering momentum for the way ahead: the fifth report of the Lancet Standing Commission on Liver Disease in the UK (link to 2018 document attached) presents further evidence on the increased burden of liver disease and reiterates the need for fiscal regulation. It also highlights the increasing prevalence of obesity-related liver.
Financial case for action on liver disease: The British Liver Trust worked closely with the Foundation for Liver Research and the Lancet Commission on promoting the financial case for action on liver disease. This report summarises the escalating financial costs to the health and care system as well as the wider societal costs related to the three lifestyle-related risk factors (alcohol, obesity and viral hepatitis).
We are committed to the reduction of morbidity and mortality resulting from hepatitis C (HCV), and the eventual elimination of the virus. 215,000 people in the UK are estimated to be living with chronic HCV. Many of these are undiagnosed, yet with the right diagnosis and treatment, HCV is curable, thanks to new therapies that are now available.
We want to see a more coordinated and effective approach to testing, treating and curing people with hepatitis C (HCV) in the UK and greater emphasis on the prevention of new infections. We have already reduced hepatitis C mortality by 10% and we are working with the Hepatitis C Coalition to call for a coordinated joined up strategy so that we can eliminate the virus by 2030.
The National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care. The Scottish equivalent is called the Scottish Medicines Consortium. The British Liver Trust works with NICE on their evidence-based guidelines relating to liver disease.
NICE and the SMC also undertake appraisals that assess the clinical and cost effectiveness of new medicines, procedures and treatments to decide whether they should be made available on the NHS. The Trust gathers evidence from patients and represents their views at these appraisals.
Recent work includes
* Playing a key role in the development of the new NICE Quality Standard on liver disease. ÿThis quality standard covers identifying, assessing and managing chronic liver disease in children, young people and adults, and cirrhosis in young people and adults. It describes high-quality care and the priority areas for improvement.
* Input into NICE guideline on the assessment and management of Cirrhosis in liver patients. Read the full guidance on cirrhosis here and information for the public here
* Input into NICE guideline on Non-Alcohol Related Fatty Liver Disease (NAFLD) Read the full guidance here
* Successful submissions regarding sorafenib (Nexavar) ? a drug for patients with liver cancers resulting in it being approved for use in Scotland and England.
NICE is currently considering whether Selective Internal Radiation Therapy (SIRT) (link to page on our website re SIRT) should be provided through the NHS. The British Liver Trust is making representation to NICE on patients? behalf.
Experts predict that over the next decade non alcohol related fatty liver disease will become the leading cause of liver disease in the UK. Addressing obesity is therefore vital if we are to reduce liver disease mortality. We work together as a key member of the Obesity Health Alliance to campaign for a number of policy interventions that will help address the wider environmental factors that lead to excess bodyweight, as well as the social inequality and cultural differences in overweight and obesity prevalence.
You can read our policy position paper on obesity here
Overweight children are 5 times more likely to be overweight as adults. So, cutting childhood obesity could have a big impact on liver disease rates in the future. We also campaign on action e to restrict junk-food marketing and promotions that steer people towards unhealthy choices and have influenced the Government?s Childhood Obesity Plan.
We work with the Royal College of Physicians (RCP) and sit on the steering group of the Improving Quality in Liver Services (IQILS) accreditation scheme.
IQILS is important because it supports hospitals to improve the quality of their liver services and drive up standards of care for people with liver conditions across the UK. Liver services across the UK are registering to work towards IQILS accreditation. To be accredited, they must meet high standards of care. These standards have been developed with the British Liver Trust and patients to ensure that accredited liver services are truly meeting patients? needs.
The IQILS scheme ensures that each hospital service measures the different elements of the service that they are providing so that they can see how they are doing compared with others. It enables them to share knowledge and resources and embed what works into their daily practice.
See our FAQs here (link to https://www.britishlivertrust.org.uk/liver-information/useful-links/iqils-the-new-accreditation-scheme-for-liver-services/
The British Liver Trust responds to consultations across the UK from a range public bodies and organisations such as the Department of Health, NICE and the NHS.
Recent responses include
April 2019: Response to Department of Health and Social Care Consultation on restricting promotions of products high in fat, sugar and salt by location and by price from British Liver Trust (link to attached doc