Meetings

Minutes of meeting held on Wednesday 27th January 2021

Attendees

Sir David Amess MP – Co-Chair, APPG on Liver Health

Baroness Masham of Ilton – Co-Chair, APPG on Liver Health

Baroness Finlay of Llandaff – House of Lords and Chair, Commission on Alcohol Harm

Rebecca Wilkinson – Public Health Registrar, Public Health England

Dr Judy Wyatt – Consultant Histopathologist, Leeds Teaching Hospitals NHS Trust

Dee Cunniffe – Policy Lead, London Joint Working Group on Substance Use and Hepatitis C

Janine Aldridge – Public Affairs Officer, The Royal College of Pathologists

Professor Ashley Brown – Consultant Hepatologist, Imperial College Healthcare NHS Trust and Clinical Lead, West London Hepatitis C Operational Delivery Network

Dr Emily Phipps – Consultant Epidemiologist, Public Health England

Hannah Bowes-Smith – Parliamentary Assistant, Baroness Finlay of Llandaff

Dr Helen Harris – Research Associate/Clinical Scientist – Epidemiology, Public Health England

James Campbell – North and West Cumbria Peer Support Lead, The Hepatitis C Trust

Laura Wetherly – Government Affairs Manager, AbbVie

Peter Shand – Associate Director, Government Affairs UK & Ireland, Gilead Sciences

Ross Harris – Statistician, Public Health England

Dr Samreen Ijaz – Virologist, Public Health England

Dr Sema Mandal – Consultant Epidemiologist, Public Health England

Simon Morton – North Coordinator, Hep C U Later

Sue Reilly – North East Peer Lead, The Hepatitis C Trust

Pamela Healy OBE – CEO, British Liver Trust

Louise Hansford – South Coordinator, Hep C U Later

Iona Casley – Policy and Parliamentary Adviser, The Hepatitis C Trust (Secretariat)

Aidan Rylatt – Policy and Parliamentary Adviser, The Hepatitis C Trust (Secretariat)

Apologies

Baroness Randerson – Co-Chair, APPG on Liver Health

Lord Brooke – Vice Chair, APPG on Liver Health

  1. Welcome and introductions (Sir David Amess, Co-Chair)
  2. Perspective on liver health as a clinical expert (Dr Judy Wyatt, Consultant Histopathologist, Leeds Teaching Hospitals NHS Trust)

Dr Judy Wyatt introduced herself and the Royal College of Pathologists, the professional membership organisation for pathologists. She provided the group with an overview of a pathologist’s perspective of liver disease. There are 600,000 people with some form of liver disease in England and Wales, of whom 60,000 have cirrhosis. Liver disease leads to 1,000 liver transplants and 10,000 deaths each year, with around a quarter of these caused by non-alcoholic fatty liver disease (NAFLD).

Liver function tests (LFTs) are widely used to identify possible problems with the liver: 25% of adults have had LFTs in the last 10 years, and 30% of LFT requests through GPs have highlighted at least one abnormality. Dr Wyatt emphasised that intervening early on in the pathway is really important, including by promoting healthy lifestyles, raising awareness among clinicians and the public, and eliminating hepatitis C and hepatitis B.

Dr Wyatt then provided some information about the liver biopsy process. The sample extracted from the liver during the biopsy must be large enough to contain relevant diagnostic features, and this has been easier to achieve in recent years due to medical advancements. There has also been a big effort to join up a best practice approach to liver biopsies, leading to the development jointly by the British Society of Gastroenterology, the Royal College of Radiologists and the Royal College of Pathologists of guidelines last year.

Dr Wyatt also noted the need for continual training and assessment. The Liver EQA scheme aims to address this by arranging for more than 100 histopathologists to be sent a dozen liver biopsies to comment on. While their comments are anonymous, they are able to compare their diagnosis with those of their colleagues, and there is potential to identify “persistent poor performers”, promoting standards of subjective diagnosis.

The diseases seen in biopsies have changed greatly over the last 10 years. Hepatitis C was much less common in 2019 compared to 2011, and the role of biopsies within this timeline has changed. Where biopsies were used to determine whether people with hepatitis C had severe enough damage to warrant their going on interferon-based treatment in the 2000s and early 2010s, after the development of new, more tolerable and effective treatments to in 2015 this was not necessary.

Diagnoses resulting from biopsies have more recently tended towards NAFLD, with 40% of samples indicating rarer liver disease. Liver cancer has increased four-fold in 40 years, and by 50% in the last decade, rising up the list of common cancers both in men and (to a lesser extent) in women. Dr Wyatt cited one NHS Trust where one third of specimens from liver biopsies were found to include cancer.

Improved diagnostic pathways and improved surveillance have been positive developments in recent years. However, only 3% of histopathology departments say they have adequate histopathologists, and many of those that do work in the departments are over 55 and likely to retire soon. Dr Wyatt highlighted a need to roll out digital pathology, build up the workforce and improve information technology. One example of the latter would be for slides of the liver to be able to be scanned in digitally and uploaded on a server for many histopathologists to have access to, rather than just the one person on duty at the hospital.

Dr Wyatt told the group that there had been a big fall off in rates of liver medical biopsies in 2020, though liver resection, liver transplant biopsy and biopsy of tumour had not been as impacted.

Sir David thanked Judy for her talk and asked for her slides to be circulated through the group’s Secretariat. Prof Ashley Brown commented on the reduction in hepatologists conducting biopsies. Judy agreed that often younger hepatologists had not been trained in performing biopsies due to a streamlined pathway, noting that the increase in radiologists performing liver biopsies had resulted in much smaller sample sizes, though this had been improved due to training in recent years.

  1. Hepatitis C interventions for the homeless population during Covid-19 (Rebecca Wilkinson, Public Health Registrar, Public Health England and Dee Cunniffe, Policy Lead, London Joint Working Group on Substance Use and Hepatitis C)

Rebecca Wilkinson introduced the work that Public Health England (PHE) has been doing through the pandemic to evaluate the hepatitis C interventions for homeless populations in areas of England outside of London. Life expectancy for people who are homeless is incredibly low, and hepatitis C is a particular problem: a survey of people who inject drugs found that while 17% of respondents had hepatitis C, this more than doubled to 35% for people who also reported homelessness in the last year.

Rebecca said that Covid-19 had had a big impact on hepatitis C testing and treatment: testing fell by 38%, and this was even more pronounced in drug services. A lower positivity rate indicated that those at highest risk might be missing out on testing. In addition, treatment initiation was much lower.

When 15,000 people rough sleeping were temporarily housed during the first lockdown, service providers took the initiative to reach out to people at a time when the relative stability afforded them by stable housing might make it easier for them to engage in healthcare services. Due to the speed at which urgent outreach services were set up, there was no national co-ordination and so data was collected locally according to different protocols and requirements. The evaluation was therefore also informed by qualitative research, including structured interviews with ODN staff, peer workers, and hepatology nurses, as well as a survey developed with HCV Action sent out to all of The Hepatitis C Trust’s peer workers.

The evaluation found that all areas that responded to the survey were conducting outreach work in the summer of 2020. There was a 64% uptake rate in the settings with an estimate of the number of people being housed resulting in 1,263 people tested. Of these, 224 were found to have antibodies for hepatitis C, while 133 were found to have an active infection. Ninety-two people were offered treatment, and 83 had started at the time of analysis, although this number will have increased since the analysis was conducted. Rebecca congratulated the services on an amazing achievement, particularly at a time when everything was very disrupted.

The evaluation emphasised the importance of building strong partnerships, such as between hostels, acute NHS Trusts, drug and alcohol services, voluntary agencies, community services, sexual health services etc. It also noted that, from the data analysed, working with peers appeared crucial to the success of the testing and treatment interventions because of peers’ ability to increase clients’ engagement in initiatives. Overall risk assessments and other resources made it much quicker to pivot to deliver the interventions, as did being flexible and innovative (e.g. by supplying pan-genotypic drugs, handing out cheap mobile phones so people could be followed up with results/treatment, and setting up testing tents in hotel car parks).

In addition, Rebecca said it was still important to promote messages around testing, such as that it does not necessarily require venous bloods being taken and that treatment is no longer interferon based. Incentives were used by lots of providers, and it will be important to continue monitoring their effectiveness. A whole-health approach was seen to be crucial, for example including screening for other diseases such as Covid-19. While additional screening and signposting risks delaying things, this could be mitigated by strong partnerships. Finally, Rebecca explained how collecting data and conducting evaluations was crucial to monitoring the service, and highlighted that PHE were able to support local services in undertaking this.

Rebecca concluded by referring to HCV Action’s December peer survey which shows that many areas are still doing this kind of homeless outreach work, so evaluation remains very relevant. PHE’s evaluation of hepatitis C testing and treatment interventions for homeless populations in England (outside of London) can be read here.

Dee Cunniffe then presented to the group on the evaluation by the London Joint Working Group on Substance Use and Hepatitis C (LJWG) on the hepatitis C testing and treatment interventions delivered to homeless populations in London. Dee said that early on the LJWG identified the risk that services might rush out to do the outreach work without gathering any data. This resulted in a pan-London dataset for services to log what hotels they had visited and the results of the whole-venue testing events. The log meant that services could coordinate with peers to promote engagement. Over 1,000 of the 5,000 people temporarily housed during the pandemic were tested for hepatitis C between May and August 2020, of whom 7% were identified as requiring treatment. Dee highlighted that many of those tested were newly homeless and therefore not representative of the usual cohort targeted for hepatitis C testing. Additionally, five people were found to have hepatitis B, and 22 people were found to have HIV, of whom half had been unaware of their infection.

The LJWG’s evaluation found that the hepatitis C interventions broke down barriers to partnership working and led to the development of a whole-venue approach to testing, which has since been picked up by The Lancet and will be included in a comment piece to be published shortly. The LJWG’s evaluation of hepatitis C testing and treatment interventions for homeless populations in London can be read here.

  1. AOB and close

Sir David Amess thanked all those who attended and invited members to the next meeting of the APPG, provisionally due to take place on Wednesday 3rd March 2021 at 4pm (TBC).

Minutes of meeting held on Tuesday 10th November 2020

Attendees

Sir David Amess MP – Co-Chair, APPG on Liver Health

Baroness Masham of Ilton – Co-Chair, APPG on Liver Health

Baroness Finlay of Llandaff – House of Lords and Chair, Commission on Alcohol Harm

Mark Gillyon-Powell – Head of Programme – HCV Elimination, NHS England

Jennifer Keen – Head of Policy, Institute of Alcohol Studies

Crispin Acton – Expert Adviser, Institute of Alcohol Studies

Professor Ashley Brown – Consultant Hepatologist, Imperial College Healthcare NHS Trust and Clinical Lead, West London Hepatitis C Operational Delivery Network

Dr Roswitha Dharampal – Adviser to Lord Brooke of Alverthorpe

Rachel Halford – CEO, The Hepatitis C Trust

Vanessa Hebditch – Director of Communications & Policy, British Liver Trust

Miriam Jassey – Southern Regional Manager, The Hepatitis C Trust

Tony McClure – Prisons Peer Educator, The Hepatitis C Trust

Leila Reid – Director of Corporate Services, The Hepatitis C Trust

Peter Shand – Associate Director, Government Affairs UK & Ireland, Gilead Sciences

Iona Casley – Policy and Parliamentary Adviser, The Hepatitis C Trust (Secretariat)

Aidan Rylatt – Policy and Parliamentary Adviser, The Hepatitis C Trust (Secretariat)

Apologies

Baroness Randerson – Co-Chair, APPG on Liver Health

Virendra Sharma MP – Vice Chair, APPG on Liver Health

  1. Welcome and introductions (Sir David Amess, Co-Chair)

Sir David Amess MP welcomed attendees and explained that, while the Covid-19-related disruption meant this was the first meeting of the APPG since February, activity had continued in the background. A range of Parliamentary Questions have been tabled by members to secure information on hepatitis C prevention, testing and treatment and the secretariat has instituted a monthly newsletter to keep members and supporters updated on news and parliamentary activity related to liver health.

  1. Effect of Covid-19 on hepatitis C services and progress towards elimination (Mark Gillyon-Powell – Head of Programme – HCV Elimination, NHS England)

Mark Gillyon-Powell provided attendees with an overview of how hepatitis C services in England had responded to the challenge of continuing progress towards elimination during the Covid-19 pandemic. The implementation of lockdown presented challenges to the initiatives taking place as part of the elimination programme, with many of the key settings – prisons, probation services and drug and alcohol services – heavily affected.

However, the ‘Everyone In’ programme to provide temporary accommodation to previously homeless individuals presented an opportunity to provide hepatitis C testing and treatment to individuals usually less likely to be in touch with health services.

As a result of the hard work of peers, nurses, clinicians and others, treatment numbers during Q1 and Q2 were around a third to a half of the rates that had been expected pre-Covid, significantly better than had been feared when the pandemic first hit.

There have been positive innovations in service delivery in response to the pandemic, such as postal testing (with a new web-based portal for assessment due to be launched soon). Policies around medication dispensation were changed, meaning patients are able to be provided with a full treatment course in one go. Peer-to-peer support workers from The Hepatitis C Trust have been supporting delivery of medication to patients.

The original target for 2020/21 was for 12,500 people to be enrolled in treatment. The disruption from Covid-19 means this will not now be possible but it is hoped that we may be able to have reached 10,000 in treatment by the end of the financial year. During the new lockdown we have just entered, blood-borne virus testing, including for hepatitis C, should keep running. NHS England remains committed to achieving hepatitis C elimination by 2025.

In response to a question from Baroness Masham of Ilton, Mark confirmed that hepatitis C outreach workers are well stocked with PPE for continuing work over winter and that protocols have been put in place to ensure engagement in prisons can continue safely.

Responding to a question from Aidan Rylatt from the group’s secretariat, Mark agreed that there are potentially lessons from providing hepatitis C interventions to vulnerable groups that could be applied during the roll-out of a Covid-19 vaccine. Ensuring services are as close as possible to patients is vital: outreach vans can play a crucial role.

Professor Ashley Brown from the West London Hepatitis C Operational Delivery Network (ODN) said that in his area he has observed from testing data that hepatitis C positivity among the high-risk groups tested this year was lower than he had expected and questioned whether this has implications for the overall Public Health England (PHE) estimates of hepatitis C prevalence. Mark agreed that this is something that needs to be explored. PHE are currently working on updating prevalence estimates for each individual ODN which will be disseminated in due course.

  1. The Commission on Alcohol Harm’s ‘It’s Everywhere’ report (Jennifer Keen – Head of Policy, Institute of Alcohol Studies)

Jennifer Keen presented some of the key findings and recommendations from ‘It’s Everywhere’, a report published in September 2020 by the Commission on Alcohol Harm, a group of independent experts convened by the Alcohol Health Alliance UK.

The Commission received over 140 submissions of written evidence from a wide range of stakeholders, including around 40 from people with lived experience. One of the overarching themes of the evidence received was the sheer inescapability of alcohol in society which led to the title of the report. The report also sought to demonstrate that the harms of alcohol are multifaceted, affecting the individual drinker but also families, communities and society as a whole.

The Commission was established in the context of there having been no UK Government alcohol strategy since 2012. Since then, there have been a range of developments in our understanding of alcohol harm, for example the link with cancer. In place of an up-to-date strategy, the country’s approach to alcohol has been to promote industry self-regulation and appeal to ‘individual responsibility’. The former has led to a lack of meaningful action from industry and the latter does not take account of the harm alcohol causes to others and places the burden on the individual, rather than the product, which can also serve to enhance the stigma often felt by individuals who use alcohol harmfully.

Alcohol harm has a significant impact on society, with alcohol-related crime estimated to cost £11.4bn per year and the cost of alcohol to the health service estimated at £3.5bn. In terms of the individual health risk, we now know more about the role alcohol plays in enhancing the risk of cancer, with drinking one bottle of wine an equivalent cancer risk of smoking ten cigarettes for women and five cigarettes for men. There was a 400% increase in liver disease deaths between 1970 and 2010, with alcohol playing a significant part in the increase.

The Commission found that there are many missed opportunities for intervention to help people to address their harmful alcohol use. There is a need for further roll-out of identification and brief advice, including in less usual settings – for example, the Commission heard of hairdressers and driving instructors taking on this role. The Commission also heard that there are many barriers to treatment, such as lack of join-up with mental health services, inadequate funding, poorly designed pathways and lack of personalisation and flexibility of treatment.

The Commission’s recommendations to reduce harm to children and families included encompassing alcohol in the remit of the Domestic Abuse Commissioner; better support for professionals in contact with families to identify and intervene around harmful alcohol use; and better communication of pregnancy drinking guidance and guidelines to support foetal alcohol spectrum disorder (FASD).

Other recommendations included:

  • A new alcohol strategy with evidence-based measures
  • Action on price, through alcohol duty and the introduction of minimum unit pricing (MUP) in England and Northern Ireland (to match the policy’s introduction in Scotland and Wales)
  • Reducing availability through better licensing powers, allowing local authorities to take into account public health in licensing decisions
  • Action on marketing, with restrictions on advertising and sponsorship
  • Roll-out of identification and brief advice in all settings
  • More investment in treatment services
  • Requirement for health messaging on all alcohol products
  • Introduction of a lower drinking driving limit.

Following the presentation, Rachel Halford from The Hepatitis C Trust asked whether the report covered the link between alcohol and obesity. Jennifer responded that obesity is featured in the report, including the fact that people with obesity who drink get 10% of their calories from alcohol. There is an opportunity for action around the Government’s next obesity strategy which will feature consultation on whether alcohol products should have to list calorie information.

On a question regarding whether education is an important part of preventing future harmful alcohol use, Jennifer remarked that it is very important but it can be an “uphill struggle” due to the competing messaging from alcohol industry marketing. There should be a requirement for health warnings to accompany alcohol advertising and marketing.

Rachel noted the lack of action on duty as a big contributor to alcohol harm. Jennifer agreed and highlighted the importance of the Government’s current consultation on alcohol duty.

Baroness Masham of Ilton asked whether Covid-19 lockdowns have led to issues with people accessing treatment and also what understanding we have of the effect of the introduction of MUP in Scotland. On the impact of Covid-19, Jennifer referred to an Institute of Alcohol Studies briefing which examined the effect. There is a mixed picture in relation to treatment services – some are finding support harder to access but services moving online has helped others and the overall picture is more positive than might be expected.

It will be years before we get the full picture regarding MUP’s effect in Scotland but early indications are very encouraging. Compared to England, consumption has gone down around 6-7% since the introduction and a number of products have been reformulated, such as high strength cider being reduced in size and strength.

Vanessa Hebditch from the British Liver Trust said that during the pandemic their helpline has received calls from people with alcohol-related liver disease who have been missing the support they used to access and relapsing and also from people reporting concern at how much their drinking has increased.

Professor Ashley Brown noted the difficulty in achieving political action around alcohol harm despite other major public health progress in recent decades. Sir David Amess remarked that the economic challenges following Covid-19 may open the door to alcohol duty increases as the Government is in need of revenue-generating measures.

Baroness Finlay, as the Commission on Alcohol Harm’s Chair, then provided her perspective on tackling alcohol harm. Responding to Professor Brown’s point, Baroness Finlay stated that the way society, influenced by industry, portrays alcohol causes issues for political action. However, there are two good opportunities for politicians to address alcohol harm at the moment, with the Internal Markets Bill and the Domestic Abuse Bill.

Baroness Finlay emphasised the need to address the way alcohol is promoted and sold in supermarkets. We also need to link alcohol harm with the other major public health challenges of today (e.g. obesity and addiction) and be much clearer about talking about harmful alcohol use as an illness. The link between alcohol and obesity is particularly pertinent during the Covid-19 pandemic, given we know outcomes are worse for people with obesity who contract the virus.

  1. AOB and close

Sir David Amess said that the parliamentary members of the APPG on Liver Health will be happy to support on the issues raised in the meeting and thanked all those who attended.