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There are next to no treatments for hepatic encephalopathy (HE), which can have a devastating impact on the sufferer and their family.
HE is a brain dysfunction caused by a liver insufficiency and/or porto-systemic shunting and it manifests as a wide spectrum of neurological or psychiatric abnormalities. These can range from subclinical alterations that can go unnoticed, to anxiety and confusion, all the way through to coma.
Lynda Greenslade, clinical nurse specialist in hepatology at the Royal Free, gave advice on managing the condition, which she called the “Cinderella of liver disease”, during the BASL Nurse Forum meeting.
“There are no studies on incidence or prevalence of HE in the UK, so we don't know how many people have it,” she said.
“No randomised controlled trials have been carried out in HE, and the first drug for it was only licensed in 2013.”
Unless the underlying liver disease is treated, HE, which is often hidden by other symptoms, carries a high risk of recurrence. Symptoms, which can be recurrent or persistent, include cognitive impairment, changes in personality, changes in consciousness and disruptions to the sleep/wake cycle.
“Even in its mildest form, it reduces health-related quality of life. There is a huge burden of care placed on the family carers, as it may mean giving up work and they often feel depressed about their situation,” said Lynda.
It’s important to treat patients in a safe environment, as they are as risk of falling. Lynda said they may need to be cared for on a high-dependency unit, as they were often disorientated, and nurses needed to be aware of the risk of unsafe airways.
“Nutrition is key, so use an early NG tube for patients with an unsafe airway. Keep family and carers up to date as HE stages two to four can be really distressing to watch,” Lynda added.
Patients are treated with lactulose which works by removing the toxins causing neurological symptoms from the gut, but over dosing can cause diarrhoea.
This can lead to adherence problems, but Lynda’s advice was to explain what the medication was doing and why it was so important.
Once discharged, follow up is important and recurrence is common.
Lynda concluded by saying there needed to be greater awareness of the condition among GPs and the community as a whole.
Everyone dies, so what are we so afraid of? A nurse-led hepatology clinic in Devon is tackling that question head on and is about to be rolled out to other therapy areas.
Tony Moffat, nurse consultant at Derriford Hospital, runs the Thinking Ahead programme for people with end-stage liver disease, those who have had a diagnosis of HCC, and those who continue to drink.
“My view is we should prepare patients with uncertain, life-limiting conditions for potential demise. We should support them to reach a stage of acceptance. We should give them ownership of what happens to them,” said Tony during the BASL Nurse Forum stream at conference today.
His referrals, who are given one-hour slots, are asked to fill out a Thinking Ahead proforma, designed to help them approach the subject, start putting it into real terms and make real plans.
It asks questions like what makes you happy, what has been happening with your health, what would you like to happen in the future, and what kind of support do you have from your family?
“It’s working well. Our trust wants to use Thinking Ahead for cardiovascular disease, elderly care and renal patients,” Tony said.
He said it was a timely end-of-life intervention which empowered and enabled patients to think about the process.
“It takes away from the uncertainty and helps them to accept the unpredictability of their disease,” he added.
Live donor liver transplantation (LDLT) is a valuable treatment option and should be treated as such, delegates were told.
Speaking during the British Liver Transplant Group session at the BASL Annual Meeting today, Dr Krishna Menon, of King’s College Hospital, said it was time to rise to the challenge.
“We have the option of plodding along as we are or we can be calculated risk takers, and risk takers are achievers. There is no path; a path is made from walking,” he said.
He asked delegates if they were even telling people about the possibility of LDLT.
“Looking at LDLT between 2006 and 2016, early on, we did improve, but over the last five years there has o-[lbeen no significant change in the number that have been performed,” said Dr Menon.
This was set against a backdrop of a transplant list that has doubled between 2008 and 2016 and a change in the kind of organs becoming available from deceased donors – both of which make LDLT more useful than ever.
“Donor characteristics are continuing to change: donors are older, more obese, and less likely to have suffered a trauma-related death, all of which have adverse effects on transplant outcomes.
“Only 36% of organs get transplanted and that percentage is on the rise,” he said, adding this was despite age or BMI in themselves being contra-indications.
Referring to guidelines published in June by the International Liver Transplant Society, Dr Menon said they positioned LDLT as a less desirable alternative to deceased donor liver transplantation (DDLT).
“It is important that we offer LDLT as a treatment option that is equivalent to DDLT. The guidelines are trying to create a separate category of the waiting list,” he said.
A number of things needed to be done to increase the levels of LDLT in the UK, he went on.
These included the wide-scale collection of mortality and morbidity data so families could properly understand the risk/benefit profile and nationwide agreement on where and how these procedures should be taking place.
Liver donor transplant co-ordinators should be employed at all transplant centres, and comprehensive mentoring systems need to be put in place, Dr Menon added.
“There is a clear need to increase the numbers of LDLT, but there is a lack of infrastructure and there is a lack of agreement between units on the way forward,” he said, concluding by telling the conference that a meeting of key MDT members from across the country was planned for next month.
The UK protocol for liver transplant in patients with severe acute alcoholic hepatitis (SAAH) has failed because it is too restrictive.
That's the opinion of Dr Alex Gimson, consultant hepatologist at Cambridge, who told delegates at the BLTG session the criteria must be expanded and the protocol widely publicised.
“Some protocol criteria were introduced to address concerns about the validity of the proposal, not because they identified a cohort with a high short-term mortality and a low risk of recidivism,” he said.
The SAAH transplantation programme was established in 2014, and the criteria set as patients aged less than 40 at their first presentation with any form of alcoholic disorder, who have not previously been told to stop drinking. They should have a Maddrey DF of more than 32 and a Lille score of more than 0.45.
There should be no sepsis or GIT haemorrhage, and hepatologists, alcohol specialists and the surgical and transplant teams should all agree on the course of action.
Just two patients have been referred under these criteria, one in September, 2014, and the other in February, 2015, yet neither have been treated. The first, a 27-year-old woman, was removed from the list when her condition improved, and the second, a 38-year-old man, died 48 days after being placed on the list.
“I feel the protocol is too restrictive,” Dr Gimson said. “I do not feel age is a good predictor, and I do not than that is right that it is about first presentation – it should be about decompensation. I don’t see why co-morbidities should be an exclusion.
“Why should criteria for selection for SAAH be qualitatively different from other indications? If there is a need, we should be assessing that need in the same way as others with non-alcoholic liver diseases are being assessed.”
In conclusion, he said the current SAAH protocol and implementation had failed.
“Patients with SAAH and poor short- term mortality are not adequately identified by the current prognostic scores,” he said.
In his closing recommendations, which he emphasised were personal opinions, he said the protocol should be relaunched to concentrate on similar factors to inactive ALD, then publicised widely.
Alcoholic liver disease is a world health problem, causing 493,000 deaths in 2010 – 0.9% of the total – but are transplant criteria too tough on drinkers?
Almost half, 47.9%, of all cirrhotic deaths are caused by alcoholic liver disease (ALD), and ALD-related cancer caused 80,600 deaths in 2010.
The figures are of no surprise, said Professor Mike Lucey, of the University of Wisconsin, during the Williams-Caine Lecture at conference today, where he asked if liver transplantation should be reserved for the abstinent.
He said: “Is a liver transplant a success if the patient is saved but returns to drink? Are we setting a higher standard? Does it not just have to cure the liver disease, but the alcoholism as well?
“These patients go through a more rigorous assessment than those in other indications.”
The answer lies in the interpretation of drinking behaviour, Prof Lucey said, adding that addiction specialists and transplant clinicians and surgeons speak different languages – and that divides them.
To illustrate this, he cited the primary outcomes of the Project MATCH study, from 1997, which were the number of days abstinent and number of non-drinking days.
“In our world, we talk about drinking or not drinking. We take a binary view while addiction specialists take a quantitative view.”
The data does show that relapse in transplanted ALD patients causes more rapid fibrosis and shortens life span, but only in the long term.
Prof Lucey said: “In order to see the shortened life-span, you need long-term follow up: of 10 years in some studies. If you only find problems 10 years later, should we be restricting patient access to a life-saving treatment because of that?”
The six-month rule, in which patients are only listed for transplant if they have remained abstinent for half a year, is still “alive and well” in the USA, Prof Lucey said.
“Many patients will drink again. Some will start early and stop, some will start and continue, and some will not stop for more than 1,000 days post-transplant.
“The addiction is not going to go away because of the transplant,” he said.
Concluding his talk, Prof Lucey said a paradigm shift was well overdue, and the goal of treatment should not be inducing abstinence, but improving the lives of people with ALD.
He said: “Liver transplant is only one part of the answer. We need to learn from addiction medicine and from patient experience.”
Responding to the government's statement on the alcohol consumption guidelines, Professor Sir Ian Gilmore, chair of the Alcohol Health Alliance, said:
"We reiterate our support today for the alcohol consumption guidelines released in January 2016.
The public have the right to know about the harms associated with alcohol consumption, so that they can make informed choices about their drinking.
The latest evidence demonstrates that the risk associated with cancer increases with any amount of alcohol consumed, so there is no level of drinking which can be considered 'safe'. This evidence was not available when the guidelines were last reviewed and is partly why the low risk guidelines have been revised downwards by the four chief medical officers of England, Scotland, Wales and Northern Ireland.
I was part of the group advising the chief medical officers on the latest evidence, and can attest to the thoroughness and independence with which the guidelines were developed.
Thus far, the risks associated with alcohol consumption have been poorly communicated to the public. A study earlier this year, for example, demonstrated that nine in ten people are not aware of the link between alcohol and cancer.
To ensure the public has faith in these new guidelines, it is essential that the harms associated with alcohol are communicated clearly to healthcare professionals and consumers. This should be done via mandatory labelling of alcoholic products, and mass media campaigns developed by Public Health England."
For 20 years The PBC Foundation has been supporting people diagnosed and living with Primary Biliary Cholangitis.
On Sunday 11th September it is World PBC day when members and supporters will be involved in many charitable activities. One of these will start at the close of the BASL conference on the 9th of September as Robert Mitchell-Thain and colleagues start a 3 Peaks Walk to raise funds for the charity.
Robert would welcome the support of BASL members who would like to join them for any section of the walk, with Scafell on Friday 9th September, Snowdon on Saturday 10th September and finishing on World PBC day with Ben Nevis on Sunday 11th September.
If you want to join any leg of the event, contact Robert through firstname.lastname@example.org and if joining the event is not possible then please support their efforts through their Just Giving page; https://www.justgiving.com/fundraising/PBC-Foundation1 .
The Alcohol Health Alliance (AHA) campaigns for assurances that alcohol harm will be tackled in the government’s Life Chances Strategy.
August 2016: The AHA is working hard to ensure that the government’s forthcoming Life Chances Strategy will benefit all disadvantaged groups, including those suffering adverse consequences from alcohol, who make up a significant proportion of those needing support.
Click on the link > HERE to view their full briefing on the strategy.
If you have any questions please contact Laura McLeod, Policy and Advocacy Manager - Alcohol Health Alliance. Email - LMcLeod@alcoholconcern.org.uk or Tel: 0203 815 8930.
Statistics released by the Department for Transport today show that there has been no improvement in drink driving related deaths since 2010.
Campaigners, including the Campaign Against Drink Driving (CADD) and the Alcohol Health Alliance, are calling on the Government to lower the drink-drive limit in England and Wales in order to save lives and prevent serious injuries.
The statistics, published in a statistical release from the Department for Transport show that across the UK in 2014:
• Around 240 people were killed in drink driving related incidents, a figure unchanged since 2010.
• The number of drink driving casualties decreased slightly, as did the number of drink driving crashes.
• Only around 40% of the 1,310 people killed or seriously injured were drivers over the limit. Around 60% were other passengers, road users or pedestrians.
England and Wales currently have a high drink driving limit by international standards, set at 80mg alcohol/100ml blood. In December 2014, Scotland used its devolved powers to lower its limit to 50mg, and saw a 12.5% decrease in drink-drive offences in the first nine months of the new limit. The Northern Ireland Assembly is also in the process of lowering its drink driving limit too.
In June 2016, a Private Member’s Bill to lower the limit in England and Wales to 50mg, sponsored by Lord Brooke of Alverthorpe, successfully passed through all stages in the House of Lords, but ran out of parliamentary time to progress further. There are high levels of public support for this move, with a recent opinion poll citing 77% support for a lower legal limit.
There is also strong support from a wide range of high profile groups, including the police and emergency services, road safety charities, insurance firms and health bodies (see notes to editors for the full list of stakeholder supporters).
John Scruby, former police traffic officer and CADD campaigner commented:
“Drink driving has huge and life changing impacts, both for the individuals involved and their friends and families. The number of drink driving deaths on our roads has not reduced since 2010, the government needs to tackle this issue head on and lower the drink driving limit to make our roads safer.”
Professor Sir Ian Gilmore, chair of the Alcohol Health Alliance, commented:
“It is deeply disappointing to see that deaths from drink driving have not gone down since 2010. The government have committed to improving road safety, and it is now time they looked at the evidence from home and abroad and lowered our legal limit.
“Not only would lowering the drink driving limit save lives and prevent life changing injuries, but it is consistently supported by the general public. Now is not the time for complacency, the government must take action to make our roads safer.”
Groups supporting a lower drink driving limit include:
• BRAKE, the road safety charity
• The Police Federation of England and Wales
• Fire Brigades Union
• College of Paramedics
• The Parliamentary Advisory Council for Transport Safety (PACTS)
• The Royal College of Physicians
• The Royal Society of Public Health
• Alcohol Concern
For any enquiries please contact: Laura McLeod | Policy and Advocacy Manager - Alcohol Health Alliance - LMcLeod@alcoholconcern.org.uk