The quality statement for liver disease
The quality statement describes what good quality liver disease services should look like.
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Vision
The Quality Statement for Liver Disease sets out the Welsh Government’s future vision for paediatric and adult liver services in Wales for the next decade. It will be supported by the NHS Executive and implemented through a series of health board enabling plans and collaborations with other networks and programmes. The key areas of collaboration for hepatology services will be with diabetes and obesity services, alcohol and substance misuse services and the chronic viral hepatitis network.
Introduction
Deaths in Wales from chronic liver disease have more than doubled in the past 20 years. Liver disease is now the commonest cause of death in those aged 35-49 years in the UK. As with many health conditions, the way children and adults lead their lives directly influences the risk of developing chronic liver disease. Excessive alcohol consumption and obesity remain the commonest causes of liver disease in Wales. The large majority of patients with chronic liver disease have cirrhosis.
Better awareness of risk factors for liver disease and early detection of liver fibrosis can help prevent the development of cirrhosis. Moreover, cirrhosis is the major risk factor for primary liver cancer (HCC) that develops in 200 people per year in Wales and is the sixth most common cancer worldwide.
An important preventable, treatable and sometimes potentially curable form of liver disease is chronic viral hepatitis, caused by blood-borne viruses (BBV), Hepatitis B and C. Welsh Government has committed itself to achieving the World Health Organisation BBV elimination targets by 2030. Some of these targets relate to prevention by vaccinating infants and high risk groups such as healthcare workers. The early detection of undiagnosed asymptomatic cases remains a key intervention to improve outcomes through early antiviral treatment.
We will continue to raise awareness of liver disease and prevent it wherever possible, ensuring that patients with liver disease have timely access to high quality pathways of care, irrespective of where they live.
Collaborative working
Building on the work of the Liver Disease Delivery Plan, there will be a continuing need to provide national leadership and promote the delivery of better quality, higher value and more accessible services for patients with liver disease and those at risk. A networked approach, bringing together key system partners and experts, will further develop optimised pathways to address unwarranted variations in care whilst maintaining national leadership, local engagement and continued collaboration with the third sector, by whom the national voice of patient experience is highlighted.
Liver disease outcomes are adversely impacted by deprivation. Hence there is a need to ensure equity of access to liver services for people who have faced inequality. Some pathways will need to be reimagined in a flexible and innovative manner to deliver this. There is also a need to develop greater resilience and coproduction along with investment within the liver services workforce. The Wales Liver Registry and a value-based health care framework will guide our improvements. Continuous patient and public (PPI) involvement will be at the centre of these enhancements using the outcomes that matter to people to ensure the choices made about care and access to services, are coproduced in line with the principles within WHC/2023/001.
There is a need to work collaboratively across health boards, service users, third sector and other stakeholders to set out an agreed work programme that identifies and prioritises liver disease service developments.
Detailed service specifications will also be developed to support the planning and accountability arrangements for the NHS in Wales; these will be set out in Annex A as they become available.
Health boards and trusts will remain responsible for planning and delivering services for those with liver disease in line with professional standards, clinical guidance and the quality attributes set out below. They will be supported to deliver improved liver disease services by the NHS Executive function.
The Welsh Government’s 'More than just words' plan to strengthen Welsh language in health and care services through the ‘active offer’ principle should become an integral part of patient care. Service providers should build on current best practice and plan, commission and provide care based on this principle.
In line with the 'National Clinical Framework' this quality statement focuses on the implementation of nationally optimised pathways to support local improvement in the quality of services and address unwarranted variations in care. Wales already boasts an abnormal liver blood test pathway for early detection of liver disease in primary care. In cases where these pathways do not yet exist, they will need to be developed within this framework.
Quality attributes of liver services in Wales
Equitable
1. The NHS Collaborative currently supports the national approach to service improvement through the Liver Disease Implementation Group (LDIG). Health Board and Trust liver services collaborate with LDIG to promote transparency, support equity of access and ensure consistency in standards of care whilst highlighting unwarranted variation.
2. Services for liver disease will be targeted and appropriately informed to ensure equal access for adults and children in Wales regardless of their postcode, ethnic origin or gender (or gender identity).
Safe
3. Investigation and treatment are delivered in line with latest evidence, standards and NICE guidance, including access to new diagnostics, technologies, treatments and techniques. Account will also be taken of Welsh guidance (such as that arising from the All-Wales Medicines Strategy Group) and Welsh Health Circulars (WHC).
4. Children and adults with liver disease will continue to receive appropriate care by specialist multi-disciplinary teams with access to transplant centres where necessary. This will include the provision of safeguarding post hospital discharge, and written information to patients, families and carers.
5. A value-based healthcare (VBHC) dashboard for liver disease has been developed, building on the work of the Wales Liver Registry.
Effective
6. The importance of research into liver disease to improve quality of life, prudent use of resources and influence patient care is promoted.
7. There will be continued focus on achieving the WHO or eliminating chronic viral hepatitis (B and C) as a significant threat to public health as set out in WHC/2017/048.
8. Liver disease prevention is promoted through advice on lifestyle and provision of appropriate interventions by primary and secondary care. The ongoing aims to develop 7-day Alcohol Care Teams in each health board is one such example. In addition, linkage with the National Obesity (Healthy Weight, Healthy Wales) and Substance Misuse Action Plans will be integral to this aim.
Efficient
9. The digital enablers for improved care are harnessed by implementing online support systems, digital consultations and support throughout the system. The digital platform in support for the all-Wales abnormal liver blood test pathway needs to be commissioned on a sustainable basis so that similar resources into other clinical areas of strategic importance can be developed.
10. The liver service workforce will be further developed, to ensure it is sustainable, equitably distributed and grown to meet the predicted increase in demand for care. The Wales Liver Registry and VBHC dashboard will be key to this.
11. Research, innovation and education are further developed to enable delivery of a high quality, evidenced based, clinical care by a well-trained, specialist workforce.
Person centred
12. Person-centred care will be culturally embedded. Co-production of care ensures that patients affected by liver disease and their families/carers achieve the outcomes that matter to them.
13. Continued commitment towards BBV elimination targets set out by the WHO. To achieve this standard, all patients with chronic liver disease require access to Hepatology and/or Viral Hepatitis nurse specialists.
14. Equitable access to services for those with protected characteristics (as described in the Equality Act 2010) and provision of information is provided when needed in a form that is accessible including consideration of both Welsh and other language needs.
Timely
15. Liver services delivered by Trusts and Health Boards are audited and monitored for quality of patient care and outcomes. Much of this will be achieved via the continued participation in the Royal College of Physicians’ 'Improving Quality in Liver Services' accreditation scheme. Specific examples of timeliness measures are given in Table 1.
Specific metrics and intended outcomes relating to quality and timeliness of clinical hepatology services are given in Table 1.
| Intended outcomes (evolving list) | Cross working |
|---|---|
|
Increased recognition of pre-disposing factors for liver disease in primary and secondary care settings:
Establishments of a VBHC dashboard to define:
All Health Boards continue to engage with the IQILS as a vehicle for both continuous service improvement and peer review. IQILS requires reporting on several key performance indicators:
Continued increases in the frequency and early diagnosis of cirrhosis Reduced liver disease mortality Improved rates of referral for liver transplant Increase the proportion of patients with primary liver cancer (HCC) receiving therapy and the proportion that are surveillance detected All HBs should have 7 day alcohol care teams Developing research Formalise regional and national multi-disciplinary operational delivery networks – HCC/TIPS/Rare Liver Disease/Transition in adolescents |
Royal College of Physicians Welsh Association for Gastroenterology and Endoscopy Public Health Wales Blood Borne Virus network HIV prevention and treatment services Obesity and bariatric services Alcohol and substance misuse services Third Sector organisations including British Liver Trust, Children’s Liver Disease Foundation, Hepatitis C Trust Digital Health and Care Wales |
Glossary of terms
Blood Borne Virus (BBV)
Viruses that some people carry in their blood and can be spread from one person to another. Relevant to this statement are the hepatitis B and C viruses that frequently cause chronic liver disease.
Clinical Research Organisation and Management (CROM)
A service provider company in health care including Clinical research activities and Medical Tourism.
End of life care (EOLC)
Support for people who are in the last months or years of their life.
Health board (HB)
Responsible for planning and delivering NHS services in their area.
Hepatocellular carcinoma (HCC)
Cancer arising from the liver. It is also called hepatoma.
Human immunodeficiency virus (HIV)
A blood-borne virus that attacks the body’s immune system.
Improving quality in liver services (programme) (IQILS)
A Royal College of Physicians hosted accreditation scheme for hospitals that care for people with liver conditions to demonstrate they provide high quality liver services for patients.
Liver disease (LD)
Refers to any of several conditions that can affect and damage the liver.
Liver Disease Implementation Group (LDIG)
Supports progress in meeting priorities set out in ‘Together for Health – Liver Disease Delivery Plan’.
National Institute for Health and Care Excellence (NICE)
A non-departmental public body that develops and provides national guidance and advice to improve health and social care in England and Wales.
Patient and public involvement (PPI)
Entails opinion seeking being carried out with or by members of the public.
Patient reported experience measures (PREM)
Assesses the quality of healthcare experiences focusing on patients.
Patient reported outcome measures (PROM)
Assesses the quality of care delivered to NHS patients from the patient perspective.
Transjugular intrahepatic portosystemic shunt (procedure) (TIPS)
Inserting a stent (tube) to decompress the portal vein into the main veins of the abdomen.
Value based health care (VBHC)
Improving the health outcomes in both a financially sustainable and patient value centred way.
Welsh Health Circular (WHC)
Health guidance issued to health boards and professionals as a circular and sets the standard required to the NHS.
World Health Organisation (WHO)
A specialised agency of the United Nations responsible for international public health.
Annex A - service specifications
The NHS Executive will support the local implementation of nationally agreed, optimised clinical pathways. These will be added as they become available.
- All Wales abnormal liver blood test pathway
- WHO BBV standards
- IQILS standards