Liver Disease. Annual Report. Cardiff and Vale Health Board. April 2016

Transcription

1 Liver Disease Annual Report Cardiff and Vale Health Board April 2016 Page 1 of 29

2 1.0 Executive Summary 1. A full time Hepatologist has been successfully recruited by Cardiff and Vale Health Board. This has helped streamline existing liver services in the Health Board and has significantly contributed to the reduction in waiting times for patients needing urgent liver care. Clinics take place at UHL as well as UHW. 2. A Monthly Hepatocellular Carcinoma (HCC) clinic has been initiated and there are plans to extend this to provide a South Wales HCC clinic in Cardiff three times a month during 2016/ For patients with cirrhosis, there is a high risk of developing HCC. To manage this risk, a formal HCC surveillance programme has been initiated. This involves a combination of alpha-fetoprotein monitoring and 6 monthly ultrasound scans. 4. A joint Hepatology/Haemophilia clinic is held every month for patients with Haemophilia and Hepatitis C, which includes non invasive fibroscans to assess the degree of liver fibrosis. 5. A primary care referral pathway for abnormal liver function tests or suspected chronic liver disease has been developed. This aims to strengthen the referral process and reduce the number of inappropriate referrals as it helps the primary care physicians to identify, investigate and refer to secondary care Hepatologists. Use of the pathway should reduce the number of unnecessary investigations and improve access times to see a specialist. 6. The Gastroenterology and Hepatology Directorate are planning to introduce the use of e-advice as a fast feedback mechanism to GP s to streamline the service ensuring that only relevant referrals are received. Via HERS-2, liver referrals are now all streamed to consultant Hepatologists rather than being split amongst all gastroenterologists. 7. A specialist nurse now has significant input into the gastroenterology/liver ward to aid earlier discharges, with specialist nurse follow up and monitoring offered as routine. 8. To strengthen dietetic input on gastro/liver wards, a night time snack has been introduced for chronic liver disease patients and a diet sheet introduced for liver clinic attendees. 9. There are now two full time alcohol and substance abuse liaison nurses in post in Cardiff and Vale UHB. 10. A brief intervention training programme is now in place for front line staff, this is provided by public health staff and designed to provide staff with the skills and knowledge to undertake alcohol brief interventions. 11. Welsh government funding is now available for high cost antiviral therapy for Hepatitis C and significantly over 100 patients have been treated to date. 12. Hepatology clinic waiting times are reducing with a waiting time of less than one month for urgent patients. 13. Cardiff and Vale Health Board have initiated a local peer support group for patients with Hepatitis. 14. Palliative care referral pathway has been discussed and introduced to promote best supportive care to this patient group, who historically would have no palliative input. 15. Primary care teaching sessions, organised through the Royal College of General Practitioners have commenced thus enhancing their knowledge of Viral Hepatitis and increasing their awareness on testing, diagnosing and referring patients, to the appropriate service. 16. Expert Patient Programme (EPP) is now available for patients and their families with liver disease, supporting and educating them on how to manage, recognise and control their symptoms in a timely fashion. Page 2 of 29

3 17. Establishment of a day case paracentesis service to alleviate the symptoms of those patients with ascites is currently being worked through. This would enhance the patient experience through accessing faster effective care and it would reduce cost of admissions to the acute setting. 18. The de-compensated cirrhosis care bundle has been introduced in the Medical Assessment Unit (MAU) and provides a valuable guidance for doctors admitting patients with liver disease. The checklist aims to provide a guide to help ensure that the necessary early investigations are completed in a timely manner and appropriate treatments are given. We have conducted teaching sessions for the MAU doctors, and a recent audit has shown its usefulness in appropriately managing liver patients. 19. A Trans Intra-Hepatic Portal Systemic Shunt (TIPPS) business case has been developed to improve the quality of treatment available for those with complex liver disease. Page 3 of 29

4 2.0 Introduction The Welsh Government published the Together for Health Liver Disease Delivery Plan in 2015 which provides a framework for action by Health Boards and their partners to develop and improve services for people with liver disease. In response to this initiative, the Cardiff and Vale Liver Disease Delivery Plan was developed in November 2015 which provides stakeholders with a range of assurances and measures, aimed to demonstrably improve the quality and standard of care given to patients with Chronic Liver disease. A multidisciplinary delivery plan group was established to push forward the modernisation agenda and through this, there have been significant improvements to access, workforce and standards of care, within a relatively short period of time. With the recruitment of key new professionals, coupled with some effective service redesign and modernisation initiatives the service continues to strengthen. Waiting times continue to improve with faster access to outpatient assessment with urgent waits currently less than one month. Through simple but effective pathway redesign processes, Cardiff and Vale Health Board have improved the effectiveness of some services for example, for patients with viral hepatitis C, the numbers successfully treated within the last six months has excelled. This outcome will have a favourable impact on their future prognosis in terms of reducing the possibility of developing advanced liver disease. There is still much work to progress and the Health Board remains committed to the delivery plan and will continue to drive down waiting times for all referrals, ensuring that care is targeted to patients in the right setting and at the right time. For example, investment into priorities such as the paracentesis service will significantly reduce the need for acute admissions and in turn improve the patients experience by facilitating speedier access to treatment in a fit for purpose environment. Prevention strategies need to be a focus in the year ahead and the Liver plan delivery group will be linking with our partners to drive this forward. Reducing high levels of alcohol consumption, obesity and BBV transmission must remain a priority as these are significant contributors to the rates of liver disease. Signed / drafted by Chief Exec Page 4 of 29

5 3.0 Why is Liver disease a key priority for Cardiff and Vale University Health Board? The liver is the second largest organ in the body and it performs hundreds of complex functions including: fighting infections and illness; removing toxins (such as alcohol) from the body; controlling cholesterol levels; helping blood to clot; and releasing bile (a liquid that breaks down fats and aids digestion). There are many diseases that can affect the liver leading to chronic liver disease, cirrhosis, liver failure and potentially liver cancer. The main types of liver disease include: Alcohol-related liver disease where the liver is damaged after years of alcohol misuse. Non-alcoholic fatty liver disease a build-up of fat within liver cells, usually seen in overweight or obese people. Viral Hepatitis inflammation of the liver caused by a viral infection. Autoimmune liver disease where the body s immune system attacks the liver cells (Autoimmune hepatitis) or bile ducts (Primary Biliary Cirrhosis and Primary Sclerosing Cholangitis) Inherited metabolic liver diseases such as Haemochromatosis, alpha-1 antitrypsin deficiency or Wilson s disease these disorders occur due to inherited abnormalities of metabolism leading to accumulation of abnormal products within the liver and damage. Mortality 1 rates for liver disease in the UK have increased 400% since 1970 and liver disease is now a common cause of death after cancer, heart disease, stroke and respiratory disease. 2 It is also the third biggest cause of premature mortality in the UK and accounts for 62,000 years of working life lost per year across the UK. Admissions to hospital because of liver disease are increasing with most patients admitted with end-stage disease, liver cirrhosis or liver failure. This is primarily the result of an increase of excess alcohol consumption and an epidemic of obesity in the population but viral hepatitis also plays a major role in terms of the burden of end stage liver disease. The prevalence of key risk factors associated with liver disease and its outcomes are linked to social deprivation and inequality. Obesity is an increasing challenge in all age groups and may become the main cause of liver disease in the future. The most recent report from the child measurement programme for Wales indicated in % of children age 4-5 were overweight or obese. There was variation across Wales with 21% being overweight or obese in the least deprived parts of Wales and 29% in the most deprived areas. Failure to address this problem will lead to an increase in the burden of obesity-related liver disease in the future. There are also groups of individuals with higher risk of exposure to blood borne viral hepatitis who may have, or go onto develop, chronic viral hepatitis. The Welsh Government s Blood Borne Viruses Action Plan for Wales provides a 1 Addressing liver disease in the UK: blueprint for attaining excellence in health care and reducing premature mortality from lifestyle issues of excess consumption of alcohol, obesity, and viral hepatitis. (Roger Williams et al; Lancet; 2014; 384: ) 2 Page 5 of 29

6 strong platform for further efforts in this plan to tackle liver disease related to blood borne viruses and the associated risk factors. Prevalence of hepatitis C is known to be higher among some populations, for example injecting drug users and those born in countries of high prevalence. Many of these populations have higher prevalence for different reasons and targeted action in different communities and settings will be required. The Welsh Government's Substance Misuse Delivery Plan has helped to tackle unsafe injector practice and excessive alcohol consumption. Overview of local health need and liver disease challenge This section describes the population within Cardiff and the Vale of Glamorgan and provides a summary of the current and potential challenges. The population of Cardiff and Vale is growing rapidly, especially in Cardiff. Currently, around 470,000 people live in Cardiff and Vale. Between the 2001 and 2011 censuses, the number of people living in Cardiff increased by 13%, more than double the Wales average of 5.5%. The population structure is also changing, with an even larger increase in the number of people aged 85 and over as life expectancy rises and premature deaths fall. In Cardiff and Vale this older population has increased by 32% in the last 10 years, outstripping the Wales average of 28%. There are currently around 10,000 people aged 85 and over in Cardiff and Vale. The number of infants and young children has also risen significantly in Cardiff, with the 0-4 age group rising by 17% compared with a 6% rise on average across Wales (there was no rise in the Vale). In ten years it is estimated the overall population of Cardiff and Vale will have risen to 550,000, an increase of nearly 20%, over double that forecast for Wales as a whole; while the population aged over 85 in Cardiff and Vale is projected to have grown to nearly 15,000, an increase of around 50%. Life expectancy in the Vale of Glamorgan has increased from 74 to 79 years for men and from 79 to 83 years for women, in the past two decades 3. In Cardiff, life expectancy for men has increased from 73 to 78 years, and for women has increased from 79 to 82 years. Healthy life expectancy - the period of life which can be expected to be lived in good health - is years less than this but has also been steadily improving. Worryingly, however, life expectancy is significantly lower in our more deprived communities than in our more affluent communities; overall, the gap between our least and most deprived communities in Cardiff and Vale is around 12 years for men and 10 years for women. For healthy life expectancy this gap is even wider, at around 23 years for men and 21 years for women. Not only is it concerning that such a gap in life chances exists in a modern, developed country, but the evidence locally suggests this gap is getting bigger, not smaller. Obesity Obesity is strongly associated with the prevalence of non-alcoholic fatty liver disease (NAFLD) amongst the population. A third of obese individuals have NAFLD and the 3 Public Health Wales Observatory. Measuring inequalities 2011: trends in mortality and life expectancy in Wales. Cardiff: Public Health Wales; Page 6 of 29

7 2003/ / / / / prevalence in the UK of the disease is estimated as between 17-33% (assuming levels of obesity in the UK are at 23%) 4 In the 2013/14 Welsh Health Survey, 58% of Welsh adults reported a BMI classified as overweight or obese, and 22% were classified as obese 5. Across Cardiff and Vale UHB, current levels of overweight and obesity in adults are 54%, and 20% respectively. Obesity and overweight levels are slightly lower in Cardiff and Vale UHB compared to Wales. Figure 1 illustrates the trend in obesity for Cardiff, the Vale of Glamorgan and Wales up to 2011/12. Across Wales, the trend in obesity is increasing and in Cardiff and the Vale of Glamorgan there appears to be some levelling off. In Cardiff and Vale, 22.1% of children aged 4-5 years old in 2013/14 were overweight or obese 6 (Wales figure 26.5%). The prevalence of obesity in the Cardiff and Vale population, and the rising trend, is important because obesity is one of the main causes of liver disease, alongside alcohol and viral hepatitis. Figure 1: Adults who were overweight or obese (based on BMI), age-standardised percentage, Wales, Cardiff and the Vale of Glamorgan, 2003/ /12 Age-standardised percentage of adults reporting to be overweight or obese, all persons, Cardiff and Vale UHB and Wales Produced by Public Health Wales Observatory, using Welsh Health Survey (WG) 70 95% confidence interval Cardiff and Vale UHB Wales Williams et al (2014) 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. Available at: 5 Welsh Government. Welsh Health Survey Cardiff: WG; Available at: 6 Public Health Wales NHS Trust (2015) Child Measurement Programme for Wales 2013/14. Available at: Page 7 of 29

8 There is a close link between obesity and deprivation, Figure 2 shows the relationship between obesity and deprivation and illustrates that higher percentages of people living in the most deprived areas of Cardiff (and similarly Wales) report being obese compared to people living in the least deprived areas. Figure 2 Percentage of adults reporting to be obese, by deprivation fifth, all persons, Wales and Cardiff, Produced by Public Health Wales Observatory, using Welsh Health Survey (WG) and WIMD, 2011 (WG) 95% confidence interval Most deprived Wales Cardiff Next most deprived Middle Next least deprived Least deprived Alcohol Regular and heavy drinking over time can put a strain on the liver, often leading to alcohol-related liver disease 7. Hazardous and harmful drinking levels are commonly encountered among hospital attendees. In Wales, between 2010 and 2012, there were around 250 alcohol-specific deaths (where the condition was wholly attributable to alcohol) in males and 140 in females per year 8. Alcoholic liver disease accounts for the majority of these deaths (82% for males, 86% for females). In Cardiff and Vale, approximately 55 people die every year from alcohol-specific conditions (figure 5), primarily from liver disease (82% of deaths in males and 81% in females). In the 2013/14 Welsh Health Survey 4, 41% of adults reported drinking more than the recommended guidelines (no more 3-4 units per day for men, 2-3 for women) on their heaviest drinking day in the last week, and 25% reported binge drinking (double the recommended guidelines). In Cardiff and Vale 44% adults drink over the recommended guidelines and 26% binge drink. As Figure 3 shows adult consumption has fallen slightly in Wales since 2008, according to the self reported data captured by the Welsh Health Survey. However, although an overall reduction is positive, it is not the case for all age groups, and amongst some groups drinking has increased or remained persistent 6. Adults aged 7 NICE guidelines [CG100] Alcohol Use Disorders: Diagnosis and clinical management of alcoholrelated physical complications, Available at: 8 Public Health Wales Observatory Alcohol and Health in Wales Available at: Page 8 of 29

9 under 45 years drink less than before, but adults aged 45 and over have increased or remained the same in all categories across Wales (Figure 7). Figure 3 Percentage of adults reporting drinking above guidelines on a day in the past week, agestandardised percentage, persons, Cardiff and Vale UHB and Wales, Produced by Public Health Wales Observatory, using Welsh Health Survey (WG) 60 95% confidence interval Cardiff and Vale UHB Wales Figure 4 Percentage of adults who reported drinking above guidelines, males and females aged 16+, Wales, and Produced by Public Health Wales Observatory, using Welsh Health Survey (WG) 95% confidence interval Males Females Males Females Mortality and alcohol-specific hospital admissions are strongly related to deprivation, rates of both are much higher in areas of high deprivation 6. Every week in Cardiff and Vale there is approximately 138 alcohol-attributable hospital admissions 9. Alcohol-specific mortality rates in Cardiff and Vale UHB for males is the highest in Wales at 22 per 100,000 (females is 9 per 100,000) in , and has been consistently higher than Wales for all ages since 2003 (in males the figure is 17 per 9 Public Health Wales Observatory Alcohol and Health in Wales 2014: Cardiff and Vale UHB Summary. Available at: Page 9 of 29

10 100,000, females 9 per 100,000 in Wales). Figure 5 illustrates the average annual rates of alcohol-specific mortality across Cardiff and Vale over a 10 year period, and highlights that the highest rates are in the areas of highest deprivation. Figure 5 Blood Borne Viral Hepatitis Blood born viruses (BBVs) primarily affect the liver and are spread from person to person through contact with infected blood and other body fluids and therefore should be preventable. Key points from the Blood Borne Viral Hepatitis Action Plan for Wales include: The hepatitis C virus (HCV) and the hepatitis B virus (HBV) have the greatest public health significance in the UK both can cause serious liver disease The estimated incidence of HCV amongst intravenous drug users (IDUs) across south Wales is between 3.4 and 9.4 cases per 100 person years (incidence varies regionally in south Wales) homeless IDUs have a higher prevalence than housed IDUs HBV is treatable with a safe and effective vaccine HCV is mainly carried by current and ex injecting drug users (IDUs); as injecting risk behaviour is high, numbers will increase unless preventive action is taken The majority of infection is undiagnosed and the majority of individuals with HCV are untreated Whilst Wales is a very low prevalence country for HBV, certain groups are at higher risk of infection as highlighted below HBV is common in IDUs, but certain other groups also have a higher risk including ethnic minority groups that have strong links with high prevalence countries, men who have sex with men, sex workers and incarcerated individuals Page 10 of 29

11 One of the primary causes of infection of Hepatitis C is amongst intravenous drug users. The Hepatitis C in the UK report estimates that 50% of intravenous drug users are thought to be infected with HCV and the most recent survey carried out by (anonymous link survey) estimates that as high as 47% of infected individuals are unaware of their BBV status Among people who inject psychoactive drugs such as heroin and mephadrone, approximately two in five are living with Hepatitis C, but it is likely that half of these are undiagnosed 10. About one in thirty of those who inject image and performance enhancing drugs such as anabolic steroids are living with Hep C. About 1 in 5 infected people will clear the hepatitis C virus naturally. Those who fail to clear their virus develop chronic infection and consequently are at risk of ultimately developing liver failure and/or liver cancer. Persons chronically infected with HCV generally remain asymptomatic for many years. In , 3596 people who inject drugs accessed a needle and syringe exchange service in Cardiff and Vale. The Unlinked anonymous monitoring survey in Cardiff and Vale of people who inject drugs who are in contact with substance misuse services illustrated that approximately 25% of those surveyed every year have tested positive for Hep C antibodies. HBV is transmitted amongst people who inject drugs, but levels of transmission have declined in recent years 9. Reported uptake of the vaccine in Wales has increased amongst people who inject psychoactive drugs; in 2013 uptake was 74%. Numbers of people accessing the vaccine who inject image and performance enhancing drugs are lower, only 40% reported uptake in In , 2900 people who inject drugs accessed a needle and syringe exchange programme (NSP) in Cardiff and Vale 11. There is a need to increase the opportunities for testing, screening and treatment of BBV in appropriate settings, which could include substance misuse services. In 2012, approximately 22% of those at risk of BBV infection who were seen in SM services were tested for HCV (Cardiff and Vale Health Board data), and in , only 8% of those people attending an NSP received a HBV vaccination 11. Amongst prisoners, who are at increased risk of BBVs, in 2014, 22% of prisoners received the full course of HBV vaccinations (1166 people). 6% of the new admissions in this time period (total of 285 people) were tested for HCV. All data is from Cardiff and Vale UHB, but it should be noted that during this period the data collection systems have been under development so should be interpreted with some caution. Reported uptake of the HBV vaccine in Wales has increased amongst people who inject psychoactive drugs, in 2013 uptake was 74%. Numbers of people accessing the vaccine who inject image and performance enhancing drugs are lower, only 40% reported uptake in Public Health England, Shooting Up: Infections amongst people who use drugs in the UK, 2013 (update Nov 2014) 11 Public Health England, Hepatitis C in the UK 2015 report 12 Public Health Wales (2014), Harm Reduction Database (HRD) data quality report Cardiff and Vale University Health Board 11 Public Health Wales (2014), Harm Reduction Database (HRD) data quality report Cardiff and Vale University Health Board Page 11 of 29

12 In order to maintain the low levels of HBV now amongst those who inject psychoactive drugs, the levels of vaccine uptake will need to be maintained. Appropriate interventions are needed to raise vaccination levels amongst those who inject image and performance enhancing drugs 9. Liver Disease In 2013/14 in Cardiff and Vale UHB there were 89.6 per 100,000 hospital admissions for liver disease (figure 8) which is slightly below the Wales rate. This is the European age-standardised rate for admissions with a principal diagnosis of liver disease. The highest rate is in Cwm Taf UHB, and Cardiff and Vale is the fourth highest in Wales out of the seven health boards. 4.0 How well are we doing in Cardiff & Vale Health Board on services for liver disease? This is Cardiff & Vale Health Board s annual report on services for liver disease. It presents an overview of how well the health board is performing in this area. It also highlights the work that the health board has undertaken over the past 12 months to review our current service provision and to identify where service provision needs to change to meet demand and to meet the quality requirements set out in the Welsh Government s Delivery Plan for Liver Disease. 1. A full time Hepatologist has been successfully recruited by Cardiff and Vale Health Board. This has helped streamline existing liver services in the Health Board and has significantly contributed to the reduction in waiting times for patients needing urgent liver care. Clinics take place at UHL as well as UHW. 2. A Monthly Hepatocellular Carcinoma (HCC) clinic has been initiated and there are plans to extend this to provide a South Wales HCC clinic in Cardiff three times a month during 2016/ For patients with cirrhosis, there is a high risk of developing HCC. To manage this risk, a formal HCC surveillance programme has been initiated. This involves a combination of alpha-fetoprotein monitoring and 6 monthly ultrasound scans. 4. A joint Hepatology/Haemophilia clinic is held every two months for patients with Haemophilia and Hepatitis C, which includes non invasive fibro scans to assess the degree of liver fibrosis. 5. A primary care referral pathway for abnormal liver function tests or suspected chronic liver disease has been launched. This has strengthened the referral process and reduced the number of inappropriate referrals as it helps the primary care physicians to identify, investigate and refer to secondary care Hepatologists. Using the pathway will also help avoid unnecessary investigations, and reduce waiting times to see a specialist. 6. The Gastroenterology and Hepatology Directorate are starting to introduce the use of e-advice as a fast feedback mechanism to GP s to streamline the service ensuring that only relevant referrals are received. Via HERS-2 liver referrals are now all streamed to consultant hepatologists rather than being split amongst all gastroenterologists. 7. A specialist nurse now has significant input into the gastroenterology/liver ward to aid earlier discharge, with specialist nurse follow up and monitoring. Page 12 of 29

13 8. To strengthen dietetic input on gastro/liver wards, a night time snack has been introduced for chronic liver disease patients and a diet sheet introduced for liver clinic attendees. 9. There are now two full time alcohol and substance abuse liaison nurses in post in Cardiff and Vale UHB. 10. A brief intervention training programme is now in place for front line staff, this is provided by public health staff and designed to provide staff with the skills and knowledge to undertake alcohol brief interventions. 11. Welsh government funding is now available for high cost antiviral therapy for Hepatitis C and significantly over 100 patients have been treated to date. 12. Hepatology clinic waiting times are reducing with a waiting time of less than one month for urgent patients. 13. Cardiff and Vale Health Board have initiated a local peer support group for patients with Hepatitis. 14. Palliative care referral pathway has been discussed and introduced to promote best supportive care to this patient group, who historically would have no palliative input. 15. Primary care teaching sessions, organised through the Royal College of General Practitioners have commenced thus enhancing their knowledge of Viral Hepatitis and increasing their awareness on testing, diagnosing and referring patients, to the appropriate service. 16. Expert Patient Programme (EPP) is now available for patients and their families with liver disease, on how to manage, recognise and control their symptoms in a timely fashion. 17. Establishment of a day case paracentesis service to alleviate the symptoms of those patients with ascites has been developed. This would enhance the patient experience through accessing faster effective care and it would reduce cost of admissions to the acute setting. 18. The decompensated cirrhosis care bundle has been introduced in the Medical Assessment Unit (MAU) and provides a valuable guidance for doctors admitting patients with liver disease. The checklist aims to provide a guide to help ensure that the necessary early investigations are completed in a timely manner and appropriate treatments are given. We have conducted teaching sessions for the MAU doctors, and a recent audit has shown its usefulness in appropriately managing liver patients. The above list indicates many of the achievements in improving access to treatment and support for Liver disease management. In terms of next steps, Cardiff and Vale Health Board plan to further strengthen the above and will:- 1. Take the local support group nationally as there is no other support network available to Welsh patients. 2. Take the paracentesis proposal forward; a business case identifying the benefits and financial implications for the Health Board is being worked through by the delivery group team. This is critical as it will enhance the patient experience through accessing faster, safer and effective care. It will further reduce the cost of admissions to the acute setting which can often lead to significant and unnecessary bed stays. 3. Take forward TIPPS Business case with commissioners to secure funding for service within Cardiff and Vale Health Board. We are using three outcome indicators to measure and track how well our liver disease services are doing over time. These are: Page 13 of 29

14 The mortality rate of people dying from liver disease amongst our population. The number of hospital admissions for liver disease amongst our population. The number of emergency hospital admissions for liver disease amongst our population. Outcome one: The mortality rate of people dying from liver disease amongst our population This outcome measure tells us how many people are dying from liver disease in our region. If we are successful, we would expect to see a continued fall in the number of deaths over time. EASR mortality rate from Chronic Liver Disease including cirrhosis per 100,000 rolling 3 year periods - C&V and Wales The mortality rate from liver disease in our Health Board is decreasing. This compares well to the overall mortality in Wales. Further decline in the mortality rates would be our target over the coming years. Page 14 of 29

15 Outcome two: The number of hospital admissions for liver disease amongst our population. This tells us how many people are admitted to hospital with liver disease. If we are successful, we would expect to see a continued fall in the number of admissions over time. Hospital admissions due to all cause liver disease C&V and Wales Admission rates remain static however, the principles of treating and assessing patients in the community or as day case procedures/assessments remains top priority and is reducing the necessity for admissions. Page 15 of 29

16 Outcome three: The number of emergency hospital admissions for liver disease amongst our population. This tells us how many people are admitted to hospital as emergencies with liver disease. If we are successful, we would expect to see a continued fall in the number of admissions over time. Number of emergency admissions for Viral Hepatitis - C&V and Wales Data has been provided for the number of emergency hospital admissions for liver disease and the percentage of hospital admissions for liver diseases which are emergencies. The number of emergency admissions for viral hepatitis is shown separately. The number of hospital admissions due to all cause liver disease has remained static in C& V Health Board. This will be comparable to admissions to other health boards. 5.0 Our approach to liver disease Significant changes in our outcome indicators will take place over time. We have developed a number of NHS assurance measures to help us understand how well we are preventing, detecting and treating, and supporting those living with liver disease in Cardiff & Vale s Health Board s In Cardiff & Vale Health Board we published our Liver Disease Delivery Plan. The Plan is designed to enable us to deliver on our responsibility in delivering high quality care to patients with liver disease. It sets out: Delivery aspirations we expect over the next year Specific priorities Responsibility to develop and delivery actions Page 16 of 29

17 Population outcome indicators and NHS performance measures Our priorities for liver disease are: Preventing liver disease 1) Reduce risk factors for liver disease, including obesity and harmful levels of alcohol consumption 2) Reduce levels of viral hepatitis & increase detection and treatment of individuals with a diagnosis of Hepatitis B or C Timely detection of liver disease 1) Improve surveillance opportunities. 2) Reduce waiting times. 3) Enhance diagnostic profile and capabilities. Fast and effective care 1) Improving access to assessment and treatment. 2) Providing care in the right setting at the right time. 3) Modernisation of existing services in line with patients needs. Living with liver disease 1) Providing a comprehensive, compassionate and effective service to patients with chronic liver disease. 2) Empower patients where possible to take control of their own health and management plans. Improving information 1) Continue to work with partners to further innovate and strengthen communication pathways i.e. e-advice, e-referrals. Targeting research 1) Identify and develop an audit strategy in line with local and national requirements. This annual report sets out the progress we have made against each of our priorities and sets out a baseline for future years against which progress can be monitored. 6.0 Preventing liver disease The priorities are: 1. Work with the Public Health Wales Health Improvement Programme to ensure appropriate effort is allocated to reducing the risk factors for liver disease and programmes reflect the potential contribution to reducing liver disease. This work should include optimisation of services and strategies for the primary prevention of liver disease, as well as increasing awareness of liver disease throughout the pathway and related pathways. 2. Take forward the legacy of the Blood Borne Virus Hepatitis Action Plan in all relevant settings and continue the effort to eradicate viral hepatitis; including working to identify and treat individuals with a diagnosis of hepatitis B or C infection and working with the Welsh Health Specialised Services Committee and Page 17 of 29

18 All Wales Medicines Strategy Group on the phased introduction of new hepatitis C drugs. 3. Further develop the opportunistic assessment of alcohol intake in different settings and develop in house alcohol care teams within health boards to provide timely interventions as appropriate; including helping to take forward the systematic process for reviewing alcohol-related deaths and make recommendations about how Substance Misuse Services and Alcohol Liaison Services can better assist the management of risk factors for liver disease. 4. Examine opportunities and make costed recommendations to increase the availability of targeted community testing for viral hepatitis and fatty liver disease particularly in areas of socio-economic deprivation to address health inequity; including the community availability of non-invasive testing (NITs) for liver fibrosis among high risk populations. 5. Continue to review and monitor the content of the online over-50s health and wellbeing assessment Add to your Life in relation to risk factors for liver disease. 6. Develop an approach to help de-stigmatise liver disease. People need to be supported to make informed choices about lifestyle behaviours in order to minimise their risk of liver disease. People should be aware that they are able to reduce the risk factors, and they should be able to access appropriate support and advice to do so. Progress in this area includes:- Training in Nutrition Skills delivered across Cardiff & Vale Referrals to new level 4 weight management service Training in Alcohol Brief Interventions delivered to range of professionals, including staff in EU and primary care Primary care pilot project to increase awareness, screening and referral rates for viral hepatitis Add to Your Life online health check for over 50s offered with support from Age Cymru Roll out of Making Every Contact Count (MECC) training to wide range of professionals We are using one assurance measure in this area. It is the months of life lost due to alcohol amongst our population. Page 18 of 29

19 Assurance measure one: Months of life lost due to alcohol This measure is an estimate of the increase in life expectancy at birth that would be expected if all alcohol-attributable deaths among persons aged under 75 years were prevented. In Cardiff and Vale the months lost due to alcohol from for males was 13.2 (Wales 13.5), for females 6.0 (Wales 6.5). In comparison to other areas in Wales, for males the figure is the third highest, with Cwm Taf the highest at For females the figure is one of the lowest, with Cwm Taf the highest at 8.1. Months of life lost due to alcohol, males and females, aged under 75, C&V, Wales and England All of the prevention interventions above are working towards reducing these figures. As alcohol-attributable mortality rates are higher in areas of high deprivation it is particularly important to address alcohol consumption in these areas. 7.0 Timely detection of liver disease The benefits of prompt diagnosis could potentially reverse the impact on liver damage so timely detection is crucial if patients are to make life changing decisions towards their health. To support this Cardiff and Vale Health Board are working towards 1. Improved provision of assessment and testing of those at highest risk of developing liver disease. 2. Improved awareness and understanding of liver disease among primary and community care, and local government partners to help detect early liver disease and make appropriate referral. 3. Developing a nationally agreed care pathway for patients with abnormal liver function tests and develop a national audit to support this. 4. Developing a nationally agreed care pathway for the risk assessment of those incidentally found to have fatty liver disease. Page 19 of 29

20 5. Developing nationally agreed referral guidelines to improve consistency and quality in referral practices to manage demand and minimise inappropriate investigation of those at low risk. This will include appropriate links to guidance and related care pathways and service frameworks. 6. Development of a proposal which identifies those at greatest risk of fatty liver disease. 7. Encouragement of primary care colleagues/clusters/locality groups to identify a champion for liver disease who will work with the health board liver disease team to improve risk management, detection and referral practices. 8. Undertake a cost assessment of improving the effectiveness of the routine use of risk assessment tools (such as routine provision of AST/ALT ratio) to identify those at greatest risk of significant liver disease. 9. Measure performance against key standards in the developed national audit of the care pathway for the investigation and management of abnormal Liver Function Tests, across primary and secondary care. As part of the detection programme we have ensured that:- 1. We have developed a pathway for patients with abnormal liver function tests. This will help the primary care physicians to identify, investigate and refer to secondary care Hepatologists. Using the pathway will also help avoid unnecessary investigations, and shorten the time patients wait to see a Hepatologist in secondary care. 2. Over the last six months, an alcohol liaison nurse has attended the liver clinic on alternate weeks to identify patients who needed help with their alcohol dependence, and provide appropriate guidance. 3. Fibroscans are now available in all the liver clinics at University hospital of Wales; this is a helpful diagnostic tool in the liver clinic. 4. A dietician is available on an ad-hoc basis in the liver clinics and satellite transplant clinic. This provision is currently unfunded, but we have realised the importance of having a dedicated dietician s service in the management of complex liver disease patients in the outpatient clinic. A business plan for a full time dietician dedicated to the care of patients with liver disease is currently being scoped. Page 20 of 29

21 8.0 Fast and effective care The priorities are: 1. Plan to establish a liver disease unit in each health board staffed by at least one consultant Hepatologist supported by additional consultant Hepatologists or gastroenterologists with appropriate training in managing liver disease. Each unit should provide support to primary care clusters and through a hub and spoke arrangement support neighbouring hospitals to facilitate high quality inpatient care. 2. Health boards review liver disease pathways, including adoption of the BSG/BASL care bundle for de-compensated cirrhosis patients, and take forward work to optimise the pathway efficiency and link to related pathways. 3. Health board liver disease units to work with WAGE to meet common standards and meet routinely to share best practice and assess performance against standards. 4. Improve access to related services such as diagnostics (particularly fibroscan and biopsy, including trans-jugular biopsy), dietetics and interventional radiology. 5. Implementation group to support the development of regional networks to facilitate optimal service delivery and improvement including outreach services with transplant centres. 6. Implementation group to support access to national or regional hepatocellular carcinoma Multi-Disciplinary Teams. We are using four assurance measures to track our progress in this area. They are: Time from GP referral to start of treatment Average length of stay for emergency admissions Average length of stay for elective admissions Liver transplant rate Assurance measure two: Time from GP referral to start of treatment We would expect to see all patients commence their treatment within 26 weeks from the GP referral. The number of Gastroenterology Referral to Treatment (RTT) Welsh residents waiting over 36 weeks (at all providers) - C&V and Wales Page 21 of 29

22 As part of the drive by the health Board to bring down RTT times, Gastroenterology and Hepatology have shown significant reduction in waiting times, especially for urgent Outpatient appointments. This means that the liver patients will be seen earlier, with diagnosis and management of their conditions made Assurance measure three: Average length of stay for emergency admissions We would expect to see the average length of stay for emergency admissions and number of bed days reduced and fall closer to that of an elective admission. Average length of stay for emergency admissions due to all liver disease C&V and Wales. Average length of stay for emergency admissions for all liver disease remains high and problematic as patients often have complex discharge needs. The Health Board continues to work with its partners to facilitate a faster discharge. Page 22 of 29

23 Assurance measure four: Average length of stay for elective admissions We would expect to see the average length of stay for elective admissions and number of bed days reduced. Average length of stay for elective admissions due to all liver disease C&V and Wales. Although length of stays are reducing, patients who require admission have extremely complex issues and length of stays are generally admitted on a long term basis with average lengths of stays approximately 2-3 weeks. To facilitate discharges, the ward works closely with its partner agencies to ensure that appropriate packages of care are in place in a timely and effective manner. Page 23 of 29

24 Assurance measure five: Liver transplant rate EASR rate of liver transplant procedure, all ages, per 100, / /14 - C&V & Wales Cardiff and Vale Health Board send more liver patients for liver transplant compared to the rest of Wales, on an average. The satellite transplant clinic held quarterly at Cardiff sees these complex liver disease patients locally before they are assessed in the Liver transplant centre. Post transplant patients are also seen here, reducing the stress of these patients travelling to the transplant centre. The appointment of the new Hepatologist will no doubt see an increase in the number of patients referred for transplants in the coming years. 9.0 Living with liver disease The priorities are: 1. Facilitate the strengthening of the co-productive approach to designing services and treatment plans. 2. Consider the feasibility of developing one-stop-shop cirrhosis clinics where patients can have their disease monitored and surveillance ultrasound scans undertaken as appropriate. 3. Examine opportunities to encourage and support better primary care management of those diagnosed with liver disease including improved uptake of appropriate vaccinations. 4. Improve access to specialist dietetic advice and psychological support, especially for patients with cirrhosis and chronic liver failure so that they can better self-manage their condition. 5. Support the provision of palliative care services for patients with chronic liver failure. 6. Encourage each health board to engage community support groups to help patients manage their condition in the community. Page 24 of 29

25 We are using three assurance measures to track our progress in this area: The percentage of one year and five year liver cancer survival rates. Hepatitis B related end-stage liver disease/hepatocellular carcinoma hospital admissions. Hepatitis C related end-stage liver disease/hepatocellular carcinoma hospital admissions. Assurance measure six: Liver cancer survival - persons - the percentage of one year and five year relative survival rates - Wales The doubling of the one year survival rates of liver cancer patients reflects the care and treatment provided by the surgeons, Hepatologists and the interventional radiologists, with their respective specialist teams within the C& V Health Board. The availability of Sorafenib in Wales, as announced by the Health Minister in recent days, would help a subgroup of patients and will improve the one year survival rates of these patients. Page 25 of 29

26 Assurance measure seven: Hepatitis B related end-stage liver disease/heptocellular carcinoma hospital admissions, EASR rate per 100,000, all persons, all ages, 2004/ /14 - C&V and Wales Cardiff and Vale Health Board are performing well against this measure. Assurance measure eight: Hepatitis C related end-stage liver disease/heptocellular carcinoma hospital admissions, EASR rate per 100,000, all persons, all ages, 2004/ /14 - C&V and Wales The incidence of Hepatitis C and hepatocellular carcinoma is on the rise in the UK. Compared to the rest of Wales, Cardiff and Vale admission rates are lower in comparison. Page 26 of 29

27 10.0 Improving information The priorities are: 1. Review the quality of existing data systems for the reporting of liver-related morbidity, mortality and associated risk factors and make recommendations for improvement. 2. Develop a clinical management system to support the care of individuals with chronic liver disease, provide measurement of health outcomes and support high quality audit and research. 3. Develop information to increase public awareness of risks factors related to these conditions in a way which is specific and relevant to each of the at risk communities; this work must have as its focus the de-stigmatisation of liver disease and its causes. 4. Develop national management guidelines facilitating the assessment of individuals with abnormal LFTs; these should include guidelines for the management of common complications of liver disease and indicators for referral. 5. Develop and implement electronic alerts for patients with abnormal liver function tests linked to national pathway guidance directing the requesting clinician to advise on further investigation and, if necessary onwards referrals to specialist services. 6. Health boards work to increase awareness of relevant educational material for staff (e.g. RCN liver disease toolkit, RCGP online resource on Hepatitis B and C: Detection, Diagnosis and Management).Increase provision of medical and nursing training in hepatology and introduce wider educational opportunities for clinicians to increase awareness of liver disease, its risk factors and symptoms. 7. To develop the delivery plan set of measures in order to understand the current situation and the size of the issue, including: Identify existing care pathways for the investigation and management of chronically elevated LFTs and map local provision of services. Establish the number of people diagnosed with cirrhosis in each health board. Establish and report the waiting time measures for patients referred for outpatient specialist assessment. Collated data on admissions related to liver disorders Estimated number of years of life lost from liver disease in Wales. Geographical deprivation gaps for liver disease morbidity and mortality. Participation in national clinical audits is a requirement which health boards must ensure is achieved. Full (100%) participation is required to effectively monitor progress in the delivery of care for people with liver disease, to provide comparative outcome data and allow effective benchmarking. Cardiff and Vale Health Board are not currently involved in national audits, but will participate in the next year. Page 27 of 29