January is Love Your Liver month on the other side of the Irish Sea. In January of this year the British Liver Trust’s travelling pop-up clinic screened 800 people in 8 different locations in Great Britain. 21% of these, following a fibroscan, were referred to their GPs. 

It has been a couple of years now since Gordon Cave first suggested that we try to bring the roadshow to Northern Ireland.  From then on he has worked steadily to keep us focused on making this happen.  Which it did – on Tuesday of last week.   

On 20^th May the British Liver Trust ran their first Love Your Liver roadshow in Northern Ireland at CastleCourt Shopping Centre.  A screening area where members of the public could answer an online questionnaire was set up on the ground floor close to the Royal Avenue entrance.  The fibroscanning was done in an empty retail unit on the second floor.  Here those referred had an opportunity to talk to one of three consultants from the RVH who were present at different times of the day.

Members of the RVH Liver Support Group, alongside friends and family, acted as volunteers, handing out flyers, explaining the purpose of the road show to passers-by and chatting to people in the queues for screening and fibroscanning.  We were delighted that that Dr. Paul Darragh of the British Medical Association, Northern Ireland dropped by in the afternoon and that Health Minister Mr. Edwin Poots M.L.A. visited in the morning.  Both men took a very keen interest in the raodshow, chatting to a wide range of medical professionals, volunteers and members of the public.  The Minister was also given a clean bill of health after he very willingly sat through the screening process.

At the end of the day, 112 people had been screened, 60 had been fibroscanned and 37 had been referred for liver function tests or further action.  After 16 years as a charity working mainly in support of those dealing with liver disease, it was a privilege for the RVH Liver Support group to be working on a project aimed at preventing others from ever having to do so. 

We are indebted to many people, without whom it would not have been such a successful health promotion day:

·      –  to Andrew Langford, CEO of the British Liver Trust, for his direction on the day and his invaluable contribution  to all the pre-planning;

·      –   to Carol Hazell and Sandra Cooper-Keen of the British Liver Trust for conducting the screening so skilfully and so sensitively;

·       –   to Carolyn Adgey, RVH registrar, who did all the fibroscanning;

·     –  to Drs. McDougall, Cadden and Cash for giving of their time to speak discreetly to members of the public who had been fibroscanned;

·       –   to Binder Tohani and the management of CastleCourt for allowing us to stage the event and for calmly directing us through all the administration;

·       –    to Dave Pettard for photographs;

·       –   to Vincent Kearney for making sure everything was delivered and returned on time;

·       –   and to RVH LSG volunteers for their sensitive and interested engagement with everyone they dealt with..

All bar one of these volunteers knows about the trauma of liver disease, either as a patient or as a carer.  While we will never know the full impact of the Love Your Liver Campaign on the lives of those who visited the Belfast pop-up clinic, if only one person is spared what these volunteers and their families have gone through, the day will have been more than worthwhile.   

**** See thanks and photos in ‘From The Chairman’ section of this website ****

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The 16^th AGM of the RVH Liver Support Group was held in the Samuel Irwin Lecture Theatre on Thursday 10^th April.

Dr Roger McCorry addresses the meeting

Guest speaker for the evening was Dr. Roger McCorry, recently appointed consultant hepatologist at the RVH.Members, guests and friends met and chatted over light refreshments before the meeting which got underway at 7.30 p.m.  Initial business was the adoption of the minutes of the AGM for 2013 and of the Treasurer’s Report for 2103-14.

In his Chairman’s report, Donald Cairnduff reflected on a satisfying year which included:

·                a successful outreach event for children and parents at the Odyssey in September;

·     a successful outreach event for adults at the Seagoe Hotel in November,

·         two challenging and informative members’ meetings in October and February;

·         an outlay of £4, 800 on patient care;

·         an outlay of £17, 712 on hospital equipment

·          and continuous steady and sensitive work on patient care, which is by far the most important facet of the group’s work. 

He paid tribute to the many members and friends of the group whose efforts had raised £19, 325 for its work during the year.  He also offered his sympathies to all who had lost loved ones, including the friends and families of two recent committee members, Carina Matthews and Siobhan Gough.

The full report can be read by visiting the From the Chairman page on the website.

Dr. McDougall took charge of the meeting while the committee stood down.  The Committee for 2014-15 was then voted in: Gordon Cave (President); Donald Cairnduff (Chair); Kay Duffy (Founder); Sharon Millen (Vice Chair); Eileen Hearst (Secretary); Tom McCready (Treasurer); Jennifer Cairnduff: Seamus Cunningham; Rachel Quinney-Mee and Anya Toner.

Committee members Anya Toner, Sharon Millen and Donald Cairnduff (Chairman)

The meeting concluded with a fascinating presentation by Dr. Roger McCorry. After summarising his career to date, Roger discussed ‘operational tolerance’, where the liver graft keeps functioning  properly and the recipient’s immune system stays strong despite the absence of immune-suppressive drugs.  Current research, while recognising the challenges and risks of weaning patients off immune-suppression, estimates that operational tolerance may soon be possible in up to 40% of selected cases.  Meanwhile, stem cell therapy offers the potential of transforming liver fibrosis into a healthy functioning liver.   While never downplaying the difficulties, Roger’s presentation offered a vision of a future when life might be easier for many transplant recipients.  The lively question and answer session that followed showed that it had certainly caught the imagination of his audience.

L to R Sandra Hamilton, Ann McKee, Donald and Carol Watson. The three ladies are representing the Joe Watson Foundation.

Cheque presentation from the Charlie Beverland Foundation

Charlie Beverland was a well known local cricketer and rugby player and, once his playing days were over, for many years an Ulster Branch Rugby referee.  He sadly passed away in 2009 after a long struggle with liver cancer.  The Charlie Beverland Foundation was set up in his memory.

On the morning of 5th May, Belfast Marathon participants representing the Charlie Beverland Foundation met at La Mon Hotel in Castlereagh, ready for the tough challenges ahead and the prospect of raising significant funds for their chosen charities.

Sharon Millen receives a cheque from the Charlie Beverland Foundation

Before they left, they were joined by RVH Liver Support Group Vice-Chair Sharon Millen, who was looking forward to an altogether less strenuous day.  Sharon was proud on behalf of the Group to receive a cheque from the Foundation for £5,753.  This money was raised through a cycling event in the French Alps undertaken in July 2013 by friends of the Foundation, including ex-Irish rugby internationals Paddy Johns and Dennis McBride and ex-Irish Hockey internationals Jimmy Kirkwood and Billy McConnell.  They completed L’Etape de Tour, which is one of the more gruelling stages of the world’s premier cycle race, La Tour de France.

The RVH Liver Support Group is very grateful to the friends of the Foundation who helped raise this money and to Charlie’s daughter Megan who co-ordinated the fund raising and set up the cheque presentation on May Day morning.

As with all donations to the group, the money will be used judiciously in support of all who are dealing with liver disease – and their families and carers – throughout Northern Ireland. 

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At just after 3 p.m. yesterday, people in Belfast’s Great Victoria Street were stunned to see Banana Woman appear on the roof of the Europa Hotel.  She smiled and waved before abseiling down the wall.

She was the last in a long line of superheroes to make this descent.  Various Caped Crusaders and at least three Spidermen had preceded her – as well as a few ordinary members of the public whose inelegant progress down the wall didn’t have quite the same impact with spectators as Banana Woman’s.

Sharon and Donald representing RVH Liver Support Group

In real life Banana Woman is RVH Liver Support Group Vice-Chair Sharon Millen.  Alongside Chairman Donald Cairnduff, she had been roped into the Nothern Ireland Transplant Forum’s charity abseil, part of their year-long  ‘9 GOALS’ project.  Others abseilers included representatives of donor families, transplant recipients and their friends, as well as medical professionals.

The purpose of the day was threefold – to raise money for the Denise Carter Foundation, which funds projects in aid of organ donation;  to celebrate the new life that transplants deliver; and to honour real and generally unnoticed superheroes – the families who agree to the donations that restore life to very ill people.

Back on firm ground, Sharon and Donald were proud to receive medals from Leah Carter.   Leah’s mother Denise passed away shortly after giving birth to her. Her dad Steve set up the Foundation in Denise’s memory after her donated organs had saved or transformed five people’s lives.

Sharon Mileen and Donald Cairnduff receive their abseiling medals from a masked Leah Carter.

It was a privilege for both of them to represent the RVH Liver Support Group, many of whose members are transplant recipients, at such a memorable and public celebration of the gift of life.

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In October 2011 we had great pleasure announcing the appointment of our President Gordon Cave as a Director on the Board of Trustees of the British Liver Trust. This was a very great honour for Gordon personally and for the RVH Liver Support Group because it was his work within the group that earned him the respect to be chosen for this important role, and indeed for Northern Ireland to be represented at such a high level within a national organisation. Unfortunately, due to recent ill health and the travelling involved to meetings in London Gordon decided to resign from the Board in January this year.

During his time as a Trustee he contributed significantly to the work of the British Liver Trust particularly as a patient advocate where his passion and concern for the plight of those suffering from liver disease and their carers ensured that the patient voice was always heard at Board Meetings.

His most significant achievement was lobbying strongly to have Belfast included in the BLT Love Your Liver Campaign Programme and as a result the Road Show and Pop Up Clinic will be visiting Northern Ireland for the very first time and set up in the Castle Court Shopping Centre on Tuesday 20 May 2014

We are delighted that Gordon will be continuing his work with the RVHLSG.

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The RVH Liver Unit has recently been strengthened with the arrival of Dr. Roger McCorry.

Roger, a past pupil of Ballyclare High School, trained at Queen’s and during his 3^rd year elective worked in the LITU at King’s alongside Professor Nigel Heaton.

Spells as a Junior House Officer in the Mater Hospital and as a Senior House Officer in various hospitals in Northern Ireland led to his taking up a gastroenterology training post in Manchester from 2007 – 12.  During this time he also undertook a year’s hepatology training, firstly in the Liver Unit at Nottingham and then in the transplant unit at Cambridge.

This led to spells as a locum consultant and gastroenterologist in the Royal Preston Hospital and as a consultant hepatologist in Wythenshawe.

Our new consultant Dr Roger McCorry

The chance to return home and work in the RVH came ‘out of the blue’ and he had no hesitation in applying for it.  So far he has thoroughly enjoyed being back in Northern Ireland.  He is coping well with the pressures of work – and of fatherhood, following the arrival of Oliver in late February, a brother for 3 year old Richard.

Roger set up a nurse-led fibroscan service in Preston and would be keen to set up a similar service in Belfast.  Inspired by his experiences in King’s and Cambridge, he is particularly interested in how liver transplantation will develop in the years ahead and in the likely impact of stem cell research.  He will be speaking about these issues as our guest at the 2014 AGM.

We wish Roger every success and happiness in his new post.

 

 

 

 

Meeting with First and Deputy First Ministers

On the invitation of Mrs. Jo-Anne Dobson, MLA, I attended a meeting at Stormont on Tuesday 25^th March, at which the First and Deputy First Ministers heard arguments in favour of a change to the law on organ donation.

Mrs. Dobson is currently working on a draft of her Private Member’s Bill to change the law from an ‘opt-in’ system to a ‘soft opt-out system’.  Such a change reflects the views of 85% of the RVH Liver Support Group’s membership from the poll taken in December 2011.

I was fortunate to be given an opportunity of presenting some of the arguments – the fact that countries with some form of opt-out system have around 30 deceased donors per million of population while the UK has only 19; and the prospect of a more open culture for discussing organ donation ensuring that the wishes of the deceased are better known.  Others emphasised that donation must always be preceded by family consent and that a change in the law must go hand-in-hand with improved infrastructure and thorough public education.

l – r : Martin McGuiness (DFM), Jo-Anne Dobson (MLA), Peter Robinson (FM), Donald Cairnduff, Billy Thompson (Northern Ireland Kidney Research), Mark Dobson (kidney recipient).

I was also fortunate to be able to say a little about the work of the RVH Liver Support Group and about the experience of liver patients – whose mean waiting time for a transplant is 175 days; who have to travel to England for surgery; and who, when they get there, will be treated by transplant teams who are now having to use ‘extended criteria’ organs, since the need for organs outstrips their current availability.

It was a privilege on the day to be able to pass on something of the experience of liver transplant patients to our two most prominent politicians.

Donald Cairnduff

Lucia at opening of London Aquatics Centre

The Olympic Swimming Pool for the London Games in 2012 has been transformed into a major public facility,

London Aquatics Centre with Tom Daley

the London Aquatics Centre.

30 members of the British Transplant Sport swimming Team, aged 12 – 65, took part in the official opening event.

Amongst them was Lucia Quinney-Mee, aged 15 from Ballycastle.  Lucia, twice a liver recipient, was  the top junior competitor at the 2013 British Transplant Games.

On Tuesday May 20 the British Liver Trust’s Love Your liver Campaign will come to Northern Ireland for the first time. It will be set up at Castlecourt Shopping Centre on the morning of May 20 and will run through the morning and the afternoon.

The Love Your Liver Campaign in Manchester

The Trust has been running the campaign in Great Britain for several years. Last year was its most successful ever.  In all their team screened 806 people in 8 different venues, with queues in some places forming before 9 a.m. in the morning.  Of the 594 of these people who were fibroscanned, 124 were referred for further tests as a result of the scan showing signs of some liver damage.  Just as important, those who weren’t referred received the outcomes of their screening and information on changes that could improve their health and reduce the risk of liver disease.  As one of the trustees remarked, ‘Getting this early warning not only helps the individual but may save the NHS millions.’

The RVH Liver Support Group, in assisting the planning of the campaign, is grateful for the support of Mr. Andrew Langford, CEO of the British liver Trust,  the RVH consultants and the management of Castlecourt.  Please come along on the day and encourage friends and family to do so as well.

The February members’ meeting took place in the Samuel Irwin lecture theatre on February 20. The guest speakers were clinical psychologists Dr Melanie Wolfenden and Dr Chris Tennyson. Melanie deals with adults and Chris works with children. After an introduction by the chairman prepared questions were asked by Donald to our guests. When they gave their answers members had the opportunity to ask their own questions.

The thought that they had given to the questions, plus the clarity and detail with which they answered them, helped generate some very worthwhile discussion.  Both speakers emphasised the positive impact of strong mental attitudes in healing without ever downplaying the difficulties that patients encounter, particularly transplanted patients.  The blend of theory, research evidence and real life stories in their responses did much to ensure a very interesting  and encouraging evening. The extent of the audience participation was testament to that.