RVHLSG contributes to research costs at the RVH Liver Unit

The RVH Liver Support Group recently made a donation to the RVH Liver Unit as it investigates the possibility of bringing “Enhanced Liver Fibrosis” testing to N Ireland. In the article below Dr Leanne Stratton, a hepatology consultant in the RVH leading the research, explains what it all means for patients here.

About the ELF test

The “ELF” test is a blood test, also known as the “Enhanced Liver Fibrosis” test.  This blood test is a panel which measures 3 separate blood markers of scar damage (fibrosis) in the liver: hyaluronic acid (HA), procollagen III amino-terminal peptide (PIIINP), and tissue inhibitor of matrix metalloproteinase (TIMP-1).  This blood test panel isn’t currently available in Northern Ireland.

NICE Guidelines 2016

The ELF test was mentioned in NICE (National Institute for Clinical Excellence) guidelines for non-alcoholic fatty liver disease (NAFLD) in 2016 as a way to determine if there is any significant scar tissue in the liver.  One in four adults in Europe has evidence of fatty change in their liver, but not all of these patients will develop scarring in their liver secondary to fat, and not all will need seen by a hepatologist.

The NICE guidelines suggest that the ELF test may be used in adults who have a diagnosis of NAFLD to determine if there is any evidence of advanced fibrosis.  These guidelines suggest that, for patients who have an ELF score of 10.51 or above and NAFLD, they can be considered to have advanced fibrosis.  For patients with an ELF score of less than 10.51, they are unlikely to have advanced liver fibrosis, and should be reassessed at 3 yearly intervals.

Current practice in RVH Liver Unit

In the RVH Liver Unit, patients are risk-stratified using the “NAFLD score” – this is a blood panel score taking into account recent liver bloods, platelet count, body mass index (BMI) and presence of diabetes.  For patients who are “low risk” on this score, they can be managed in primary care, addressing any relevant risk factors (weight, high blood pressure, diabetes, high cholesterol or sedentary lifestyle).  For patients who are of “indeterminate” or “high” risk, they are generally offered a Fibroscan and a clinic appointment in the service.

Fibroscans and current challenges

One of the current challenges in the Liver Unit, is with regards to demands on the Fibroscan service.  The Fibroscan can be used across lots of different causes of liver disease to help assess for fibrosis.  Some conditions, such as chronic hepatitis B, require an interval Fibroscan every few years as per guidelines, which adds to the demand on the resource.  Our current waiting time for a routine Fibroscan in Belfast is in excess of two years.  Over 25% of patients who are waiting for a Fibroscan have NAFLD.  For many years, the only Fibroscan machine in Northern Ireland was in Belfast, and so our waiting list still holds patients from other Trusts who were referred before each Trust had their own scanner.

Another challenge of the Fibroscan can be the difficulty in obtaining accurate readings in patients who are morbidly obese – an increasing challenge that we face in our clinics.  There is also currently a four year waiting time for routine clinic appointments in the hepatology service – yet another challenge that we are aiming to address.

Potential solutions

We are keen to explore other ways to “risk-stratify” our patients, so that patients who are at the highest risk of significant fibrosis are seen quickly, and those who are low risk can be given appropriate lifestyle advice and discharged back to the care of their GP.  We are currently working on a pathway for new NAFLD referrals into the service, development of a nurse-led first assessment clinic for NAFLD, and educations sessions for GPs across Northern Ireland.  As part of this work, we have been keen to explore whether the addition of ELF testing would help to risk-stratify patients, to enable more timely access to the service to those in highest need, and to reduce demand on the Fibroscan service.

RVH Liver Support Group

We have been very grateful to the RVH Liver Support Group for a very kind donation of £2,000 in 2022 to run a pilot study of ELF test feasibility.  With collaboration between our laboratory scientists, phlebotomy hub, Ninewells (Dundee) biochemistry labs, and our specialist hepatology nurse Jessica Brown, we have been able to invite 40 patients with “indeterminate NAFLD” scores for ELF tests which cost £50 per patient.  This has only been possible with the support of the RVH LSG.  This pilot is currently underway and results will hopefully be available and collated by the end of January 2023.  This will allow us to assess whether the introduction of ELF testing will be of benefit in the risk-assessment of new NAFLD patients referred into the service.  If it appears to be useful, it will give us the information that we need to approach commissioners to ask for funding for this service for patients in Northern Ireland.

RVHLSG contributes to research costs at the RVH Liver Unit2022-12-23T12:19:28+00:00

Public Health Agency advice to parents

The Public Health Agency (PHA) is calling on the parents of 5 to 11 year olds to get their child vaccinated against COVID-19.
While most children aged 5 to 11 will have mild disease if they contract COVID-19, some may experience symptoms which last longer than just a few days. Vaccination of children in this age group has been shown to help prevent the small number of hospitalisations and intensive care admissions that can occur in this age group. It has also been shown to help provide short-term protection against non-severe disease.
A new specially designed children’s formulation of the Pfizer BioNTech COVID-19 vaccine has been approved for this age group and it’s given at a lower dose compared to that used in individuals aged 12 and above (10 micrograms compared with 30 micrograms).
Clinical trials have shown that this vaccine was highly effective at preventing COVID-19 in children, protecting them and also reducing the chance that they transmit the virus to others, including family members who may be more susceptible to severe consequences of the infection.
If parents of eligible children have concerns they should speak to their GP or paediatrician. Trust vaccination teams are also happy to answer any questions about the vaccine on the day of vaccination.
Public Health Agency advice to parents2022-03-07T22:08:23+00:00

Patricia, one of our valued patient carers and committee members, would like to share a recent experience.

As a fellow LSG member and a transplant recipient  I thought I would recount my experience of getting

Covid and the treatment option I received .

I surprisingly tested positive after developing symptoms similar to a light cold .

My initial positive was on a lateral flow test. I then booked a PCR as I was still unsure . Next day the PCR test confirmed my positive Covid status .

I was contacted later on that day by a Doctor from the Covid Day Unit at the Ulster Hospital . He had picked up my details from the PCR positive test results.

He talked me through the anti viral treatment option which is offered to those in vulnerable groups which includes transplant recipients.

An appointment was made for 2 days later for me to attend the Ulster Hospital where I received my anti viral treatment .

This was given as an intravenous treatment which only took 30 mins . Everything was explained very clearly and I found the whole experience both friendly and very efficient.

And, when I was at the hospital I even  got a lovely cup of coffee and a scone.

I hope this helps anyone else who finds themselves in a similar situation.

Information on the treatment that Patricia was specifically given can be found HERE. It should be noted that this may not necessairly be the treatment that may be offered to others; this is for information only and you must be guided by your medical staff.

Patricia, one of our valued patient carers and committee members, would like to share a recent experience.2022-02-23T17:26:47+00:00

CEV (Clinically Extremely Vulnerable) Engagement Platform

The Patient and Client Council wishes to extend an invitation to the first meeting of our Clinically Extremely
Vulnerable (CEV) Engagement Platform on Monday 28th February 2022 at 11:00am.

This initial meeting will serve as an introductory meeting where we will explore the experiences of those who are
CEV, their families and support organisations and to frame the role of the PCC’s Engagement Platform and long term engagement

Please register by Thursday 24th February 2022 by clicking here.

If you have any queries, please contact Jane Reilly on jane.reilly@pcc-ni.net or 028 9536 1705

Patient and Client Council

Your voice in health and social care.

CEV (Clinically Extremely Vulnerable) Engagement Platform2022-02-21T23:09:25+00:00

Are you a liver transplant recipient?

If you’re a liver transplant recipient, please consider taking part in this new study by NHS Blood and Transplant and Imperial College.

The study is looking into the antibody response to COVID-19 in people who are immunosuppressed and vaccinated.

To take part, you’ll need to be over 18 years old and have had (or about to have) your third COVID-19 vaccine. You’ll answer an online questionnaire and take a finger prick blood test at home.

You can find out more and register to take part here > https://britishlivertrust.org.uk/transplant-recipients…/

Are you a liver transplant recipient?2022-01-20T11:44:02+00:00

The Melody Study; assessing antibody responses.

“The MELODY Study”
Some exciting news for liver patients about a new study starting today.
The MELODY Study aims to assess antibody responses following three Covid-19 vaccine doses in immunocompromised people. It will include people who have received solid organ transplants, people with rare autoimmune diseases receiving immunosuppression and people who had a diagnosis of blood cancer. It aims to recruit 12,000 solid organ transplant patients.
For more information, and to register, go to www.melodystudy.org
The Melody Study; assessing antibody responses.2021-12-08T16:46:50+00:00

*** 3rd Primary Jab Update from RVH Liver Unit ***

The Liver Unit understands the anxiety of patients and their families regarding the current vaccination programme and terminology being used.
The Chief Medical Officer of NI has adopted the JCVI advice which is very clear that the current vaccinations for transplant recipients and other severely immunosuppressed individuals are THIRD PRIMARY DOSES and not booster doses (regardless of what has been told to patients in letters or verbally up to this point).
The Liver Unit staff are simply passing on the chief medical officer/JCVI advice. The Liver Unit strongly recommend following the instructions in the letter they have issued to patients to book your third primary dose.
Please do NOT contact the Liver Unit to seek approval on an alternative pathway to vaccination as the staff will be unable to give alternative advice.
For the small number of patients who were initially told they were given a ‘booster’ dose in September, please be reassured the vaccine you have been administered is considered your third primary dose and you will not be disadvantaged when booster doses are rolled out in future. You do NOT need a fourth vaccination dose at this stage and should not seek to book a further vaccination with the letter received recently from the liver unit.
Please keep the letters you have recently been issued as these will likely be required to facilitate booster doses in approximately 6 months when details have been confirmed by JCVI/government.
*** 3rd Primary Jab Update from RVH Liver Unit ***2021-10-23T14:22:58+01:00

*** IMPORTANT VACCINATION UPDATE ***

The JCVI have recommended a “third primary dose” of COVID-19 vaccination for immunocompromised patients including liver transplant recipients. This is NOT a booster dose and JCVI will define arrangements for boosters at a later stage.

Transplant patients who were administered both doses of COVID-19 vaccination pre-transplant DO NOT require a third dose.

Patients may use the following link to book a vaccination appointment – https://vaccinations.covid-19.hscni.net/booking

The Liver Unit secretaries are currently issuing letters of eligibility for liver transplant recipients and you should expect to receive these in the post in the coming days. If you secure an appointment for vaccination but are not in receipt of an eligibility letter by the time of your appointment, please contact the Liver Unit secretaries. It may be best to select a vaccination date in at least a week’s time to allow time for your eligibility letter to arrive by post.

Vaccination Centres offered include the 7 Towers Leisure Centre Ballymena, SWAH Enniskillen, Altnagelvin Hospital and Tyrone & Fermanagh Hospital in Omagh.  The RVH Vaccination Centre is not offered.

*** IMPORTANT VACCINATION UPDATE ***2021-10-23T14:27:34+01:00

New Hepatology Specialist Nurse appointed.

Fred McDermott, one of the transplant co-ordinators in the RVH, has left his post and decided upon a new career move. We would like to take this opportunity to thank Fred for his invaluable work over the years both to the hospital and the many liver patients with whom he came in to contact.

Veronica Craig has been appointed as a  Hepatology Specialist Nurse and is assisting Tomas Doherty with the transplant co-ordinator role until Fred is replaced; we wish her well in this new temporary placement.

New Hepatology Specialist Nurse appointed.2021-06-19T11:56:27+01:00
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