Delivering hepatology care in a modern NHS

Introduction

Over the last decade, we have seen tripling diagnoses of cirrhosis and portal hypertension, with doubling figures for decompensation and primary liver cancer across Wales. 8,000 new cases of cirrhosis were identified in 2022 alone, with a prevalence of 9,476 cases of cirrhosis with portal hypertension. The Gwent Liver Unit is the umbrella under which hepatology services in Aneurin Bevan University Hospital are delivered. Like many health boards in Wales, there is significant variation in socioeconomic deprivation and ethnic diversity across a large geographical catchment. This can create challenges in providing equitable healthcare to the sickest patients, many with a very high symptom burden. 

Liver disease in the early stages is often asymptomatic, and the exponential rise of cases is due to lifestyle associated factors around obesity and alcohol use disorders. Obesity and steatotic liver disease has increased by 10-fold over the last decade.

Our model

All acute hepatology services are centralised to one hospital site on a dedicated specialist ward. Patients who present at one of the local general hospitals (LGH) with a liver related admission can be transferred if required. However, outpatient consultant and nurse-led clinics are delivered across the whole catchment at four other hospital sites and there are other community services available for patients with liver disease to help avoid hospital admissions and provide care closer to home. There is now an RCP national framework of standards (Improving the Quality in Liver Services (IQILS)) that all liver units are encouraged to work towards to reduce the discrepancy in standards of care between hospitals. The Gwent Liver Unit received full accreditation in 2022.

Primary prevention of liver disease

We all have a duty of care as public health professionals. Some of the work we have done locally around the prevention of disease and progression have included the following:

• The development of a 7-day alcohol care team to see those admitted to any secondary care setting with alcohol use disorders and either work with them closely in outpatient clinics or at home, or act as a bridge to community drug and alcohol services. The latest annual data has shown that of 139 patients seen in clinics by the team, 73% either reduced their alcohol intake or abstained. Of 70 patients seen with severe dependency, 59% have abstained completely. Alcohol services are not funded across all areas in Wales.
• Our blood borne virus (BBV) clinical nurse specialist (CNS) team have been part of a number of initiatives to detect and treat patients with hepatitis B and C. This has included visiting drug services and the homeless project. The latest progress has been the availability of point of care testing in drug services, so patients can potentially start treatment on the same day as receiving a positive test. One of our CNSs attends a monthly outreach with Gwent police, sexual exploitation and criminal justice service, working to engage sex workers into services. There also are incentive schemes with pharmacy to encourage patients to collect their medication for treatment.
• We have been part of public health events in local mosques and community centres to raise awareness of liver disease within ethnic minorities and help to risk stratify patients regarding alcohol, diabetes, obesity and BBV, along with primary care support.

Early detection liver disease

Detecting liver disease early enough to make changes or treat patients to avoid the inevitable progression to cirrhosis and liver failure has always been a challenge. Abnormal blood tests do not correlate with severity, but non-invasive fibrosis tests can help. We began a pilot commissioned by the Wales Liver Plan in 2016 which is being rolled out across Wales. This involved the automatic calculation of the AST:ALT ratio and, if raised, advice was generated to refer the patient to secondary care for further fibrosis assessment. This may result in a fibroscan which measures liver stiffness that then correlates with fibrosis and cirrhosis, giving patients the opportunity to treat factors causing the progression of disease. In the first 2 years alone, 17,770 patients had abnormal liver blood tests, of which 2,117 had a raised AST:ALT ratio. 750 were referred from primary care, and 57% went on to have an abnormal fibroscan – 29% of those had a reading within the cirrhotic range. We have been able to prioritise patient referrals, depending on their disease severity, which has resulted in shorter waits for cirrhotics who may otherwise not have been referred. This pathway is not a solution but one pragmatic approach to increasing the diagnosis of a deadly disease.

Advanced liver disease

Many patients find out they have liver disease when it is advanced. Often at this stage the disease is irreversible and without a liver transplant, for many, the prognosis is extremely poor. For these people, the final months are spent suffering with a poor quality of life, with the terrible symptoms and complications of ascites, encephalopathy and variceal bleeding.

If these patients come to hospital, we have open discussions about their prognosis in our weekly inpatient MDT. This identification can help to prepare patients and families, giving them the options to discuss their wishes around end-of-life care and advanced planning. This is always a challenge, particularly for young patients

Managing the complications

Patients with ascites have access to our ambulatory care unit for day case paracentesis or ascites management, avoiding hospital admission. Last year alone, the unit performed 236 paracentesis which are usually about 4 days hospital admission each. 

We have a home hepatology CNS service for those with frailty and complications associated with liver disease to optimise treatment at home, supporting patients and their families Over 4 years, 249 visits were made to 136 patients. Management at home included ascites management or referral to the day case unit, optimising treatment for encephalopathy, referral to dietetics, and referral to frailty and palliative care services. Many of the patients died at home or in a hospice rather than in hospital. Aspects of this model can be used with many chronic medical conditions.

Liver transplant

In patients who may potentially be a candidate for a liver transplant, we hold a monthly complex clinic – a one stop clinic to see a hepatologist, specialist nurse to assess frailty and subclinical encephalopathy, a dietician, and a member of the alcohol care team if needed. We have good links with our transplant unit in Birmingham, and a visiting transplant hepatologist attends four times a year to help reduce the assessment and travel time for our patients in Wales referred for a liver transplant.

Support

We hold a monthly liver support group for all patients and families struggling with liver disease, giving patients the opportunity to learn from each other.

We have also had sessional time from a clinical psychologist who has carried out some group sessions and teaching for our support group. Sessions covered ‘living a life of uncertainty’ which is common for many patients who are given a diagnosis of cirrhosis or liver failure.

Summary

We need to do more to raise the awareness of liver disease and the risk factors across all healthcare settings so patients have a good chance of preventing disease. Every point of contact for all professionals in advising patients on the risks of excess alcohol consumption and obesity in this process is essential, given lifestyle associated liver disease is rising exponentially. Liver disease is known as a silent killer as it’s often only symptomatic in the advanced stages.

The challenges in reaching the most vulnerable, in remote locations and socially deprived areas, remain the same for us all. However, modifying how we deliver our care can give more equity and improve the standards for the population we serve.