News

Distributed on behalf of NIHR Blood and Transplant Research Unit in Organ Donation in Transplantation and NHS Blood and Transplant.

Online Survey - Measuring patient experiences and outcomes in organ transplantation.

Do you support patients preparing for, or having received, a solid organ transplant?

We are inviting hospitals and patient organisations to complete an online survey of current use of Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) in solid organ transplantation.

Your contribution is vital to foundational work to plan the integration of PROMs and PREMs into the UK Transplant Registry.

For more information please visit the Blood and Transplant Research Unit website click > HERE .

The scope and remit of liver nurses is diversifying year on year and we remain constant in the care and management of people with and at risk of liver disease. Our diverse skills that we possess, such as being person centred, collaborative, advocates, being solution focused and proactive and demonstrating emotional intelligence in response to changing needs continues to be showcased by liver nurses locally across all four nations of the UK.

The BLNA are seeking liver nurses with a drive and enthusiasm to be involved on a national level in supporting, educating and demonstrating leadership for the liver nurse community.

The BLNA Committee require 3 new committee members from April 2023 due to planned demitting, and are now seeking nominations for the following posts:
• 2 x 2-year tenure posts
• 1 x 3-year tenure post

This is an exciting opportunity for liver nurses to get involved with our friendly committee and share their skills and experience. You will gain experience working collaboratively and strategically at a national level to ensure that the needs of people with or at risk of liver disease and liver nurses are represented at the highest levels in the UK. The BLNA are key participants in the UK Liver Alliance, IQILs refresh, BSG liver section etc.

Please read some of the testimonials from BLNA members who have joined the committee >  Download BLNA Committee Testimonials 2023.pdf

Committee members are expected to attend a monthly committee meeting held via Zoom, these take place usually on either the first or second Monday of each month from 12:00 – 13:30pm. In addition commitment is also requested from committee members to attend 2-3 other meetings each year, these may be held face to face or virtually.

If you are interested in joining the BLNA Committee, you must be a registered nurse with an interest in liver care and be a BLNA member.

Nomination Process
Candidates wishing to be considered for election require one BLNA member to propose them, and a second BLNA member to confirm their suitability for the role in writing, by email.

Please note to be eligible to nominate, both the proposer and seconder must be a registered nurse and any nomination should include your NMC PIN number.

Email your nominations, including your NMC PIN number, to Judy at the BASL Secretariat at judy@basl.org.uk by the deadline of 09:00 on Monday 30th January 2023.

It would be helpful when proposing a candidate if you can advise if they prefer to stand for a 2 year or a 3-year tenure.

A personal statement, containing no more than approx. 300 words, may be requested from the candidates following nomination. Permission will be requested to share the personal statements with the BASL BLNA membership. (Personal statements are intended for this purpose only.)

If more than 3 candidates are nominated, the BASL Secretariat will arrange for an election of all BLNA members. Three candidates will be elected by a simple majority of those BLNA members voting.

Important -
• Newly elected BLNA committee members will be required to attend an on-boarding meeting via Zoom on Friday 31st March 1:30 - 3:30pm.
• Newly elected BLNA Committee members will take over in post from 1st April 2023 and will be expected to be available to join the monthly committee meeting via Zoom, (due to Easter) is taking place on Monday 17th April 2023 from 12:00 – 13:30pm.
• Newly elected BLNA Committee members will be required to attend an additional face to face meeting in London on 3rd May 2023 where the focus will be on working towards refreshing nursing aspects of IQILS.

Michelle Clayton, Chair of the BLNA, is happy for members who are interested in joining the committee to contact her if they have any questions, you can reach Michelle at M.Clayton@leeds.ac.uk ; or you can speak to one of the BLNA committee members, see the testimonials for members contact email addresses.

BASL is committed to promoting equality, diversity and inclusion in all aspects of its work. It is actively promoting equal opportunities and access for all our members regardless of their background. We would, therefore, encourage you to consider joining the BLNA committee to help to shape the future of BASL, BLNA and liver nursing in the UK, and increase our inclusivity/inclusiveness.

After the original NCEPOD Report into the care of patients dying with alcohol-related liver disease (ArLD) published in 2013, a survey conducted by NCEPOD has re-evaluated the problems highlighted in the initial Report. This focused on the detection and management of alcohol dependent patients as well as those admitted with alcohol-related liver disease.

The survey Report – ‘Remeasuring the Units’ was published by NCEPOD on 15th December 2022 and highlights where there is further work to be done. It shows that the majority of hospitals still do not have Alcohol Care Teams, that the use of the BASL/BSG Care Bundle needs to be in routine use more widely, and that in over a quarter of Trusts patients with decompensated cirrhosis are not routinely under the care of a gastroenterologist or hepatologist.

For the full Report please click on the link > Here . 

On 27th October 2022 the British Liver Trust launched Liver Cancer UK in response to rising cases of liver cancer across the country.

Liver cancer is the fastest rising cause of cancer death in the UK. Over the past decade, liver cancer incidence rates have increased by almost half (45%) in the UK and the number of people dying from liver cancer has risen the fastest out of all the twenty most common types of cancer. There are now over 40% more deaths from liver cancer in both men and women than there were a decade ago (1&2).

The disease also has a high mortality rate. Every year over 6,000 people are diagnosed with liver cancer country-wide and just 13% of them will survive for five years or more. (3) Survival rates depend on several factors, including the stage of the disease when it is diagnosed.

Many patients with liver cancer will only be diagnosed after an emergency admission to hospital or an emergency GP referral after symptoms have become severe and the cancer is more advanced. (4) In England, 44.9% of liver cancers are diagnosed in an emergency setting, such as an A&E department (5).

Liver Cancer UK will provide much needed information and support for patients affected by this devastating cancer and provide a focus for action to address this escalating situation. It will aim to improve the lives and outcomes of people affected by liver cancer and, ultimately, reduce cases of the disease.

The British Liver Trust will continue to work towards a world free of all liver diseases in addition, and as part of, its commitment to tackle liver cancer. Liver cancer is most common in people who already have liver disease, especially if they have cirrhosis (damage and scarring) of the liver which is most often caused by viral hepatitis, alcohol or obesity (6).

Pamela Healy OBE, Chief Executive of British Liver Trust, said:
“Liver cancer patients have told us that they didn’t realise that the British Liver Trust was also here for liver cancer patients - they were often confused and worried and did not know where to turn for help. We’ve created new resources and a website with targeted information to make it easier for people to get the help they need. The new programme of activity is in response to the very worrying increase in cases across the UK. We’re also deeply concerned that survival rates for liver cancer remain so low. It’s a situation which needs to urgently change.

“Liver Cancer UK, as part of the British Liver Trust, will be dedicated to saving and improving the lives of people affected by liver cancer by raising awareness, providing support and campaigning for faster diagnosis and more research into treatments and cures.”

Fiona Bailey (age 48), a liver cancer patient from Hampshire, said:
“When I was diagnosed with liver cancer, aged 45, my husband and I weren’t sure where to turn for support. At the time, I didn’t know anybody who had gone through it apart from my father-in-law who was diagnosed ten years earlier. I was diagnosed in time for surgery although I do continue to live with the ‘worry’ that it could come back. It’s brilliant that the British Liver Trust is launching Liver Cancer UK to provide dedicated information and support to patients like me and to increase awareness of liver cancer to ensure more people are diagnosed earlier. When you’ve been through something like this you just want to help other people.”

As well as the rising cases, late diagnosis of liver cancer continues to be a problem. This is partly due to the population’s low awareness of the symptoms of the disease. In 2021, the Less Survivable Cancers Taskforce released data showing that only 5% of people in the UK were able to correctly identify all symptoms of liver cancer from a list presented to them.

Professor Stephen Ryder, Medical Advisor to the British Liver Trust and Consultant Hepatologist at NHS Nottingham University Hospital, added:

“Lack of awareness of primary liver cancer and its causes is a common problem in the UK.

“The causes of liver disease and HCC, the most common primary liver cancer, are similar and interlinked. The good news is that there are things you can do to reduce the risks. Maintaining a healthy weight, avoiding drinking alcohol excessively and protecting yourself against viral hepatitis are the best defences against both liver disease and liver cancer.

“People can also develop cancer of the liver and gallbladder without the associated risk factors and should be concerned if they have any symptoms that are persistent and not normal for them. If you’re experiencing symptoms such as loss of appetite, nausea, a swollen stomach or yellowing of your skin and/or eyes, please don’t ignore them - make an appointment with your doctor to get them checked out.”

Symptoms of liver cancer include unintentional weight loss, loss of appetite, feeling very full after eating, feeling and being sick, pain or swelling in your abdomen, jaundice (yellowing of your skin and the whites of your eyes), itchy skin, feeling very tired and weak, fever with shivers, vomiting blood, dark black tarry poo or dark urine. However, the majority of these symptoms do not occur until liver cancer is at an advanced stage, so the British Liver Trust is calling for all people who are diagnosed with cirrhosis and who are most at risk to be regularly screened for liver cancer.

Visit Liver Cancer UK to find out more.

1.Over the last decade, liver cancer incidence rates have increased by almost half (45%) in the UK. Rates in females have increased by almost two-fifths (38%), and rates in males have increased by almost half (46%) (2016-2018): https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/liver-cancer#heading-Zero 
2.Liver cancer has shown the fastest increase in mortality (within the current 20 most common UK causes of cancer death) over the past decade in the UK for both females and males. Liver cancer mortality rates have increased by 45% in females and 42% in males over the past decade in the UK. Reference: Cancer Research UK (2019). Cancer mortality for common cancers. [online]. Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/mortality/common-cancers-compared (last accessed October 2022).
3.https://britishlivertrust.org.uk/liver-cancer-awareness-month/ 
4.The Emergency Presentation Route comprises different emergency pathways into secondary care, including A&E attendance, emergency GP referrals to an inpatient setting (non–two week wait referrals) and emergency admissions to either an inpatient or outpatient setting.
5. https://www.cancerdata.nhs.uk/emergencypresentations . Data compared for 2020 Q3. Percentages differ slightly when compared to the National Cancer Registration Dataset due to diagnostic coding - this data is only currently available for 2006-2016.
6.https://britishlivertrust.org.uk/information-and-support/living-with-a-liver-condition/liver-conditions/liver-cancer-hcc/ 

Download Clinical recommendations for pre-treatment assessment of people preparing to initiate therapy for chronic hepC infection.pdf

Please contact Professor Foster directly by email g.r.foster@qmul.ac.uk if you have any questions.