WAGE Hepatology Awayday



WAGE Hepatology AwaydayWednesday 12th October 2016Meeting ReportThis meeting represented a landmark event in the evolution of Hepatology in Wales, being the first gathering solely dedicated to the advancement of liver disease services in the country. The meeting was fully subscribed with 40 delegates from multi-disciplinary backgrounds including consultants and trainees in Hepatology and Gastroenterology, specialist nurses, radiologists, public health doctors, the British Liver Trust and industry.I would particularly like to thank Dr Miles Allison, outgoing WAGE President, for his vision and commitment to dedicate the awayday to hepatological issues pertinent to the NHS Wales Liver Disease Delivery Plan. A big thank you is also due to our sponsors for the day, Norgine and Kyowa Kirin pharmaceuticals. A superb faculty of speakers was convened from around the United Kingdom to pass on their expertise on meeting key challenges of managing liver disease. The afternoon session was largely devoted to workshops designed to help begin the process of clinical pathway development, including key metrics to be measured, for Alcohol and BBV services, management of NAFLD/NASH and cirrhosis follow up.Feedback from the day has been excellent and our external speakers have also commented on how enjoyable the day was, as well as expressing admiration for the commitment within Wales to improve liver services for patients. This meeting report is not intended as a “word for word” record of the event but an attempt to pick out particular messages from each talk as well as highlighting key overall themes from the day with a view to identifying critical actions that align with the priorities in the national Liver Plan. Dr Mark Hudson, Consultant Hepatologist at the Freeman Liver Unit in Newcastle, member of the NICE Cirrhosis Guideline Development Group, former president of BASL and current BSG Vice President for HepatologyMark was the first speaker and addressed the audience on the challenges of the newly published NICE Diagnosis and Management of Cirrhosis Clinical Guideline. A former president of BASL, current BSG Hepatology Vice president and NICE guideline development group member, Mark is as well placed as anyone to comment on the guidelines. Mark’s talk very much focussed on the theme of opportunities and challenges. The key challenges to Hepatology services, based on new recommendations from this guideline include:The offer of Transient Elastography (Fibroscan) to detect cirrhosis in men who have consumed >50u (>35U for women) of alcohol per week for at least 6 monthsThe use of a composite biochemical test for estimating fibrosis (Enhanced Liver Fibrosis – ELF Score) as this is not routine practice in large swathes of the UK.Variceal band ligation as primary prophylaxis against bleeding for medium and large varicesPrimary prophylaxis of SBP in patients whose ascitic protein is <15g/dl (or an ascetic albumin <8 – based on data from Addenbrookes)Calculation of the MELD score every 6 months (with a score of 12 correlating with an increased risk of complications of cirrhosis). This is an important change as it might identify patients who could benefit from Liver Transplantation (LT) outside the current LT listing paradigm.The role of primary care in liver disease management was raised time and again and this is a particular problem given the resource constrained primary care landscape. In my view it is from the English model of clinical commissioning that ELF becomes so prominent within the new guideline as it is applicable in a primary care setting though it could be argued other tools are at least as effective. This is an area that we need to make a firm decision on in Wales given the costs involved in widespread ELF testing when we have readier access to Fibroscan than almost anywhere in the UK .The clinical value of Fibroscan in people with excess alcohol consumption remains unclear as the pick-up rate of this strategy versus the cost and resource implication is unknown. The NICE guideline though has provided some clarity around retesting and this is limited to a recheck in 2 years time in those who have alcohol-related liver disease (ARLD) in the first instance, those with (non-cirrhotic) HCV who haven’t cleared virus (should be very very few!) and those with NAFLD and advanced fibrosis (although the NICE NAFLD guideline again uses ELF to determine but F3 fibrosis could be assumed from initial Fibroscan if that is the initial stragety used).The utility of non invasive score was also explored and Mark clearly demonstrated that as age increases the specificity of these score for accurately determining advanced fibrosis diminishes. To this end the Newcastle group have a publication in press in the American Journal of Gastroenterology evaluating age specific cut-off to the NAFLD fibrosis score. This has relevance as it may prevent the need for Fibroscan in a proportion of NAFLD patients.Mark also touched on HCC surveillance and GDG felt that surveillance detects more early HCC that are amenable to curative therapies including liver transplantation.A major challenge to delivering this became evident when Mark reported results from his recently undertaken comprehensive review of liver services in the UK. This has highlighted that Wales has the lowest number of whole time equivalent Hepatologists per head of population for the whole of the UK. Although Wales did rather better in terms of specialist nurses, many undertake dual roles in Hepatology and BBV treatment delivery. Additionally there is no dedicated “year 6” Hepatology training programme in Wales.In regards endoscopic surveillance for varices, the clinical value is probably low in patients with a normal platelet count and Fibroscan score of <15.Professor Julia Verne, Public Health England Lead for Liver Disease. Julia was tasked with outlining the Public Health England perspective of preventative aspects of liver disease and is Clinical Lead for the PHE Liver Disease network as well as leading on the national end of life care programme.There is little doubt that Public Health has an enormous role to play in positively impacting on the commonest causes of liver disease, alcohol, obesity and blood borne viruses. As such trying to tackle liver disease risk factors from secondary care perspective is of limited value, and close collaboration with Public Health colleagues is critical in bringing about longer term reductions in mortality from liver disease in Wales. A key theme of Julia’s presentation was that of “Location, Location, Location” coupled with “Variation, Variation, Variation”. There are wide differences in liver disease rates within England and a fourfold difference in mortality rates amongst the most deprived quintile compared with the most affluent.This is best illustrated in PHE’s excellent Atlas of Variation which beautifully illustrates not just where the greatest burdens of liver disease reside and where the poorest outcomes are(usually in areas of high deprivation = typically those areas with highest burden) but provide locality profiles to enable appropriate commissioning or provision of services should be. The data is not presented is this way in Wales but certainly we collect largely the same data and this approach, in my view, would be an excellent way to view data in the Welsh context to evaluate current provision of services and identify where resources can be appropriately used.Julia’s talk therefore beautifully highlighted the importance of good quality data, presented in a clear format.The end of life aspect was equally challenging with many liver disease patients not receiving appropriate end of life care and many dying in acute hospitals as a consequence. There are many reasons for this including:1 in 10 patients are not admitted in the year before their death 31% admitted only once 26% admitted once and die4% all liver deaths in A&E, of which four-fifths are from complications of ARLDThese figures illustrate the unpredictable nature of end stage liver disease and also how many of those with the most advanced disease do not access the right healthcare until it’s too late. Community support for alcohol misuse disorders, education of other health care professionals, the implementation of the BASL care bundle, better links between primary and secondary care services and clear palliative care pathways for people with liver disease will help in this regard.Professor John Dillon, Consultant Hepatologist, Ninewells Hospital, Dundee – Scottish Hepatitis C Action PlanJohn eloquently spoke about the Scottish Hepatitis C Action PlanClear messages from John’s talk were around the Scottish Government’s firm commitment to eradication of Hepatitis C and therefore they have funded an upscaling of treatment numbers that will lead to a reduction in the population prevalence of disease.HCV prevalence in Scotland is 1%. Hence they are treating 2,000 per year to reduce population prevalence based on modelled data. This should lead to a 75% reduction in HCV related liver failure deaths. A key element of this philosophy is the inclusion of people who inject drugs (PWIDs) with the aim of reducing de-novo infection and re-infection from the virus.The Key Points were:Managed care networks including involvement of addictions services and prisonsand outreach to localitiesClear AccountabilityE record linking all patients in drug services over last 30 years – case ascertainment and “reservoirs of infection”Managed care networks are much more than just clinican teams: Substance misuse services, social work, mental health liaison, prisons, pharmacy, GPs, patients.Outreach a fundamental part of service.Interestingly, there have been benefits beyond improved BBV outcomes for patients in these managed networks in other health related outcomes; for example testing PWIDs led to a reduction in their all cause mortality!Drug workers have been trained to undertake dry blood spot testing (DBST) – potential to extend this across Wales which should help with case ascertainment.The effects of such an approach are impressive, in Tayside 80% have been tested and 50% treated!!Dr Richard Aspinall, Consultant Hepatologist, Queen Alexandra Hospital Portsmouth– Alcohol Care TeamsAlcohol misuse services save ?3-4 for every ?1 spent.Highlighted the importance of re-visiting the NCEPOD reports into ARLD deaths and UGIB as a driver for service changeNeed to focus on basics: Taking of a good historyIn hospital patients approx. 20% have an alcohol history and even in the NCEPOD report into ALD it was <50%.The Portsmouth Strategy is as follows:Education and training are keyMonthly study daysService needs to be 7 days and resourced as such to accrue the biggest benefitsMake alcohol overindulgence everyone’s problemLink nurses on key wardsGood quality data on dependence, Rx and Rx of complicationsQuarterly Steering GroupThe Portsmouth service: 7 days a week 08:00-16:00Now have 4.4 WTE nursesSupport services :HomelessnessHigh Impact PatientsWell beingRelapse Prevention Support WorkerLT patientsOlder PersonsOn screening: 4% admissions at QAH are high risk In addition:Local initiatives to raise price per unit: Avoidance of high strengthVoluntary Withdrawal of High Strength alcoholic beverages such as white cider by off-licences and supermarkets120/150 off licences have taken this upPHW and Police and Crime Commissioners could help with this in Wales.Mr Andrew Langford, Chief Executive, British Liver Trust – The Patient PerspectiveAndrew represents the BLT, the largest liver charity in the UKThe BLT aims to support patients and carers as well as foster researchThe key messages of Andrew’s talk were about how the patient voice can complement the clinical voice in service changeIt should also be integral to the planning of services and researchPatients can also play a key governance role and help with participation in clinical trials.Andrew pointed out that despite what is often mooted, “Patients don’t always want care close to home” and “They want the best possible care, not so bothered where”.At present, Wales is not strong on patient support groups in Liver Disease but this is beginning to change. Such support groups are integral to local service changes but can be difficult to get set up. The Implementation group of the Liver Plan has now agreed a proposal to fund the BLT for 2 years to develop its work in Wales. This work will involve support for clinical services to help set up support groups, an information officer for Wales and a national conference for patients and carers.Catherine Floyd, Specialty Registrar in Public Health – Patient Engagement for Alcohol Care TeamsCatherine is a Public Health Wales Specialty Registrar who has recently undertaken an exercise in the methodology of patient engagement. This work will be invaluable in supporting the work of alcohol care teams and improving the service through user feedback. Furthermore, the methodology is relevant to other areas of clinical practice that are being evaluated as part of the liver plan.Key outcomes from user engagement about what constitutes a good service included:Positive attitude of staff – stigma was mentioned time and again.Access – lack of knowledge about available services from healthcare professionals especially GPsThis work will be progressed to develop a toolkit but important to note that each HB has its own processes for formalised user engagement that need to be utilised.Dr Andy Holt, Consultant Hepatologist, Clinical Service Lead, Queen Elizabeth Hospital Birmingham.Outreach ClinicsOutreach is about so much more than LT.LT services are saturated and cannot continue to follow up the volumes of patients they currently do especially in light of increases in transplant related activity. In fact the LT waiting list has doubled since 2007.Another issue related to capacity is the success of LT- 1 year survival post LT is about 94% and 5 year about 82% in QEH.How do we improve access?Interestingly Wales has an acceptable rate of LT per 100,000 population (14.2) however this is not normalised to burden of liver disease. Scotland’s and Northern Ireland’s are both higher (19.1 and 17.9 respectively).Currents waits for LT:? within 6 months70% in 1 year, 80% in 2 years, 20% die on WLFollow up:Service level agreements exist in England but not so far for WalesFigures show that 1456 Welsh Patient appointments were seen in Birmingham last year representing 6% of all Birmingham’s OP activity.Interestingly, only 56% of patients of Welsh patients referred are listed with national average of 65-70%. Whether this is due to a greater number of referrals being made inappropriately or too late is not clear. Nonetheless a clearer pathway to LT assessment should use a move towards the national average as an outcome of work undertaken in this regard.It is clear that local assessment can be improved by cohorting those with advanced liver disease to being under the care of the most experienced clinicians, improving dietetic support for patients with liver disease, evaluating the role specialist nurses can play in helping patients on the path to LT and having access to an early transplant opinion. Local assessment models need to be:Patient centred: IT richPatients own recordsFast responsive 1st opinion (Red or blue slots – 2 or 4 week wait)MDT review with rapid email communicationOutreach clinics – where, how?Work is ongoing between WHSSC and LT centres within reach of Wales on improving access which ADY is facilitating. It is planned that an option appraisal will be presented to all Welsh clinicians involved in referring for LT to ascertain preference. Likely factors that will influence these decisions will be: 1) Geography (ie ease of travel), 2) Waiting time for first assessment and time to listing, 3) waiting time to completed LT, 4) deaths on waiting list, 5) the outreach model being offered.Workshop Deliberations:MetricsModerated by Prof John Dillon/Richard AspinallHCV Key metrics Numbers testedProportion treatedSVRComplications liver diseaseFocus audit on particular issuesAlcohol Key Metrics:Access/engagementOP detox offered50-70%Minimum 4 nurses to run 7:7 services on a single siteED attendancesLOSInformation provisionNAFLD/NASHModerated by Dr Brijesh Srivastava, UHWDr Andy Holt (QEH, Birmingham) shared the pathway for patients referred from primary care with suspected NAFLD at Birmingham. They have set up a joint metabolic clinic which includes a Dietician, Hepatologist/specialist nurse/metabolic consultant +/- diabetic specialist nurse. NAFLD fibrosis score is used to triage patients. Those with low scores are discharged back to primary care. Intermediate and high risk score patients are offered Fibroscan +/- liver biopsy to stage disease and managed appropriately. Existing servicesAt present, no joint metabolic clinics or specialist nurse-led NAFLD clinics have been set up in any centre in Wales. No formal links established with bariatric services to screen/identify at risk patients. Community based approachPrimary care has a major role in identifying and triaging patients with suspected NAFLD. Patients should be offered intensive lifestyle changes and appropriate specialists should be involved to support this (e.g. diabetic specialist nurse/dieticians) within the primary care ELF has been recommended by NICE but has resource implications. No single non-invasive fibrosis test is superior (e.g. NAFLD fibrosis score; FIB-4; APRI; ELF etc). It should be simple enough to be implemented effectively in primary care.Local pathways should be developed in liaison with primary careComplete pathway including bariatricsDevelopment of dedicated NAFLD clinics (could be nurse-led) Links with metabolic, diabetes and bariatric services to identify/screen at risk populationIncreased awareness about risk of liver disease in patients with metabolic risk factors (patient/healthcare professional education).Cirrhosis:Moderated by Dr Miles Alison, Royal GwentClinics: Look at mechanisms to support automated recall for HCC surveillance USS – work with IT and radiology on thisSurveillance endoscopy: Should it be for all? Should we adopt the recent Baveno criteria: Fibroscan >20 plts <150 = OGDLook at development of a Wales wide Liver Disease calculator including ready calculation of MELD, Glasgow Alcoholic Hepatitis Score and NAFLD score. Maddrey discriminant function is used less commonly now. Overall Themes and Next StepsThe overriding theme for me was that this is a time of both opportunity and challenge. The opportunity is afforded by Liver disease having a political priority within Wales unlike any time in the past. The opportunity also exists due to a committed enthusiastic but small group of consultant and specialist nurses. The challenges are multiple and exist around the lack of current resource, the lack of general awareness of liver disease and the ability to deliver on ambitious recommendations in the new NICE guidelines on cirrhosis and NAFLD.The need to improve understanding of liver disease amongst the general public as well as health professionalsData is critical in understanding burdens, patterns of disease and outcomes if we are to successfully build our services around patient need Early detection is vitalClinical networks will be essential to pool expertise and resource – let’s build on the work of the BBV teamsPathways require development: Abnormal LFTs and NAFLD, Cirrhosis and HCCKey next stepsEstablishment of sub-groups of the Liver PlanInformation subgroup met 1st time of 28th November 2016Research and Clinical Services Subgroup have both been convened for December 2016Establish the All wales abnormal LFT pathwayThe BSG updated guideline will be published soon which will allow us here in Wales to see how our structures align with the guidanceThe AST:ALT reflex testing pilot period has now finished and work is underway to evaluate its utility. Preliminary data should be available by end March 2017 with a full report end July 2017. It is hoped this will inform the development of the All Wales pathwayThis work will be taken through the clinical services subgroup with the aim of agreeing a pathway by the end of 2017.NAFLD pathwayThis will incorporate the recommendations of the NICE guidance, albeit with less emphasis on ELF testing and more widespread use of FibroscanningThe workstream for this will sit under the Clinical Services subgroupThe aim would be for a pathway to be in place by mid 2018Improvement in educationThe Implementation Group has approved funding for the British Liver Trust to develop its work in Wales with specific objectives such as a Lover Your Liver Event in each of the 22 local authorities in Wales and an annual conference to educate and share best practiceThe development of patient support groups in each area. The BLT initiative will help support clinicians in this goalImprovement in informaticsTalks have been held with NWIS about how disease specific records within the Welsh Clinical Portal fit into the objectives of the Liver Plan. Specific work needs to occur as part of the information sub-group in regards:Better recording of diagnosis data National databasingDevelopment of a Liver Disease Atlas for Wales ResearchThe research subgroup will be tasked with exploring ways we can improve Wales contribution to portfolio and pharma studies as well as generating its own research output based on national pathways and databasing ................
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