Minutes for inaugural meeting of CPG on Liver Disease and Liver Cancer

Thursday 3^rd March 2022

Attendees

Pamela Healy – Chief Executive

Joel James MS

Dr Lee Gonzalez

Mark Isherwood MS

Rhun Ap Iorwerth MS

Heledd Roberts – Senedd Office Manager

Richard Daniels – Policy and Public Affairs Manager

William Williams – Patient Representative

Sarah Lowther – Outreach Development Officer

Dr Andrew Yeoman – Hepatology Consultant

External Stakeholders

Shailesh Mistry – Norgine

Karen Owen – Betsi Cadwallader Health Board

Pat Powell – Torfaen Voluntary Alliance

Jamie Harris – Barod Swansea

Julie Adams – British Liver Trust

Apologies

Jayne Bryant MS

Altaf Hussain MS

Sarah Murphy MS

Paul Davies MS

Vaughan Gethin MS

Janet Finch-Saunders MS

Dr Andrew Godkin – Hepatologist

Dr Minesh Patel - Gastroenterologist

Andrew Misell – Alcohol Change

Joanne Hughes – Liver Nurse Specialist

Minutes

Joel James MS opened the inaugural meeting of the CPG on Liver Disease and Liver Cancer.

Joel James

Joel explained the purpose of the group is to raise awareness and the profile of liver disease and liver cancer in Wales.  That the government should be held to account as we move from the Liver Disease Delivery Plan to a Quality Statement Approach.

Joel identified a few keys statistics which demonstrates the need for greater awareness and patient outcomes in Wales.  These include that deaths from chronic liver disease have more than doubled in the last twenty years. Too many people are diagnosed with Liver disease at a late stage which unfortunately means there are fewer treatment options available. And 90% of liver disease is preventable.

Joel also highlighted that liver disease is often associated with alcohol. This prejudice needs to be challenged as liver disease can be caused by a number of factors.

Richards Daniels

Richard Daniels proposed that Joel James MS be accepted as the Chair of the CPG. This was unanimously agreed.

Joel thanked everyone for the opportunity.

Pam Healy

Pam was delighted that we are supporting the Secretariat for the Cross-Party Group on Liver Disease and Liver Cancer as the British Liver Trust sees this an important step in our journey to increase awareness and the profile of liver disease in Wales and to develop priorities to improve outcomes and care for liver disease patients in Wales.

Pam thanked Joel James for his support in sponsoring this meeting and chairing the Cross-Party Group.

Pam thanked William Williams for all his campaigning work and driving forward this group and the inaugural meeting.  William first experienced issues with liver disease in 1994 but wasn’t diagnosed until 2003 with Primary Sclerosing Cholangitis (PSC), which has no cure and is progressive. William is passionate about improving GP awareness of liver disease and early diagnosis. He has raised funding for liver disease in Wales. William has campaigned for policies to improve patient care and outcomes and secured coverage on BBC Wales and S4C around liver disease in Wales. He is also the patient representative on the Liver Disease Implementation Group.

Pam thanked Dr Andrew Yeoman for speaking today and all his work on liver disease in Wales.

Pam informed attendees that we will be holding our Love Your Liver Roadshow at Roald Dahl Plass on Tuesday 22 March from 10am to 4pm and invited everyone to join us on the day.

William Williams

William expressed his gratitude for everyones work in getting this CPG together. He also expressed his concern about the need to improve early diagnosis, GP involvement and information awareness.  He looks forward to working with everyone to take this forward.

Andrew Yeoman

Andrew gave a presentation on Liver Disease in Wales. He highlighted the Liver Disease Implementation Group, its six key themes, its successes so far. These successes include Blood Born Virus (BBV) Care, All Wales Abnormal Liver Blood Test Pathway, workforce expansion, Wales Liver Registry, patient support groups and improved reputation.

Andrew then highlighted what needs to be done next.  These include:

• Maintain focus on BBV to hit WHO elimination target
• Establish a 7 day Alcohol Care Team in each HB
• Establish the abnormal liver blood test pathway as a success

- Develop further work on early detection

- Move into community settings

• Further improve hospital care

- Develop Welsh Clinical Standards

- Education of other HCP’s

• Utilise the registry to

- Measure success and develop research in Wales

- Define minimal workforce requirements

Andrew highlighted that the main focus for the CPG should be

• Alcohol care teams
• Early detection of liver disease
• Improving the Hepatology workforce in Secondary care
• Monitoring Quality Statement, LDIG & funding

Joel then closed the meeting and thanked everyone for attending.

Actions

Richard Daniels to set up next meeting for around June / July.