The chairman, Donald Cairnduff, delivers his report
You are all very welcome to this the 17th AGM of the RVH Liver Support Group. I am delighted to welcome Professor Nigel Heaton, Director of Transplant Surgery at King’s College Hospital in London, as our guest speaker. His path may have already crossed some of yours and, if so, I hope you have renewed acquaintance before the meeting or will find time to do so afterwards. For all of us, whether we have had personal contact with Professor Heaton in the past or not, his presentation tonight should give a fascinating insight into the current state of liver transplant surgery and likely future developments.
This report will record some excellent work done over the course of the last year and its tone will be very positive, as there has been much for us to celebrate. I would wish as ever to put these positive developments into perspective. Looking back, we remember those whom we have supported through difficult times who have passed on. We recognise that many who have been restored to a healthier and more fulfilled life have gone through, and may still be dealing with, physical and emotional struggles. We recognise that our delight and relief at post-transplant recovery will always be tempered with the recognition that someone’s loved one has died to allow it to happen. There is a dark undercurrent to everything we attempt as a charity and I want to stress in opening that we never lose sight of this. I extend my sympathies and those of the whole committee to all who have lost loved ones to liver disease during the past year, and to those who are still dealing with the absence of loved ones who have passed on in previous years.
I wish to acknowledge again the support that we have received from two groups of people. Firstly, all medical staff within the RVH – the four consultants, Drs McDougall, Cash, Cadden and McCorry; Sharon Moffett, Fred McDermott and all the nursing staff in 6D; all the support and administrative staff in the RVH who have dealings with liver patients; Betty Boyd and the staff in the Programme Treatment Unit, whose work continues to make assessment for transplant surgery quicker and less stressful; and Drs Szabo and McLaughlin Tracy Close and her staff in the Children’s Hospital. This year we are particularly grateful for the advice and encouragement of Sister Esther Mallon and her staff in Outpatients. I will have more to say about how their support has enabled us to set up a Helpdesk in Outpatients later in this report.
Secondly, I am grateful for and humbled by the efforts of many who have chosen to give us financial support. In the past year the generosity of friends of this charity has raised, through personal donations, sale of items and one-off fundraising events, a remarkable £47,356.37. This leaves us with the reassuring knowledge that we are financially secure for the next two years, should not a penny more come our way during that time, and that we can concentrate fully on patient support without being sidetracked by financial concerns.
I wish to pay tribute to those on the committee who work in patient care and thank them for the sensitivity and dedication which they carry it out. Patient care remains and will always be the central facet of our work. The least publicised thing we do, it is by far the most important. Kay Duffy, founder of the group, and Anya Toner have responsibility for adult patient care. Rachel Quinney-Mee and Jennifer Cairnduff have responsibility for patient care for children and their families. Patient care payments for those who have been called to London or Birmingham for assessment or transplant more than doubled this year from £4,800 in 2013-14 to £9,800 in 2014-15. While this expenditure reflects high levels of serious illness and family distress, it is reassuring to know that we are making increasing contact with patients who may benefit from our support and with their families. We will not slacken our efforts to reach even more of them.
Others on the committee work hard in clearly defined ongoing roles. Our President, Gordon Cave, has responsibility for press and media contact. Vice-chair Sharon Millen looks after the Facebook Page and the database, as well as keeping the committee informed about current research into liver disease. Seamus Cunningham looks after the website, co-ordinates fundraising and tracks current expenditure. Our secretary is Eileen Hearst and our treasurer Tom McCready. The quality of their work is evident in the minutes you have heard tonight and in the statement of accounts that you will have received. My role as chair is eased considerably by the efficient and willing way in which all of these people fulfil their responsibilities.
The accounts for the year have been published and await the approval of the meeting. They are now with an independent scrutineer, Mr. Alastair White, for review.
In last year’s report I mentioned the forthcoming Love Your Liver Campaign and its significance as the first major event with which we have been involved that targets prevention of liver disease. The British Liver Trust has run this campaign in Great Britain for some time and its first appearance in Northern Ireland was due in no small measure to Gordon Cave’s lobbying at board level. Close and regular contact between ourselves and the British Liver Trust from January onwards allowed us to do the necessary ground work to bring the Love Your Liver Campaign to the Castlecourt Shopping Centre on 20th May.
On the day, BLT staff conducted online screening on lifestyle and diet. Those who were deemed to be at risk were fibroscanned, spoken to by one of the consultants and, in some cases, referred to their GPs. During the day 112 people were screened, 60 were fibroscanned and 37 referred. RVH consultants and Dr. Carolyn Adgey, who did the fibroscanning, worked steadily in the fibroscan area and volunteers from our membership worked steadily on the concourse to engage in a friendly and welcoming way with dozens of members of the public. It was an inspiring day and if, as a result, only one person is spared liver disease, it will have been more than worthwhile.
As you may know, all charities in Northern Ireland over a period of 5 years have to register with the Charity Commission to ensure that their governance is in line with legal requirements. We were called early in this process and Sharon Millen completed our application over the summer months. We were informed in early September that the application had been successful and were given a new charity number – NIC100892. Since then the commission has asked us to submit our policy on dealing with children and vulnerable adults. We have done this and are now awaiting its approval. It is good to know that so far this more rigorous scrutiny of charitable work has approved our governance and that, in the eyes of the law, we are focusing exclusively on our stated goals.
One of the things that we were keen to impress on the Charity Commission was the fact that we are a Northern Ireland charity. The committee has felt for some time the need to emphasise this is the way we present ourselves. Consequently, Gordon Cave and Seamus Cunningham have worked over the past months on rebranding, including devising a new logo that reflects our role as a charity working throughout Northern Ireland We aim to continue to present ourselves as a charity for all of Northern Ireland, not only through fresh imaging but also through outreach meetings in the autumn and beyond.
Earlier today we launched our new Helpdesk in Outpatients. It is particularly appropriate that Kay Duffy, Founder of the Group, declared it open. It has been a dream of hers for some time and she, Gordon Cave and Seamus Cunningham have worked hard from October of last year onwards to realise it. The Helpdesk would not have been set up without the advice and encouragement of Sister Esther Mallon and her staff, not least in their drawing up of strict guidelines for our interaction with patients. As of next week, the RVH Liver Support Group will be represented at clinics on Wednesday and Friday afternoons for informal contact with anyone who wishes to speak with us. This is a significant step forward in our efforts to engage with liver patients.
During the year we had two very successful members’ meetings. At the September meeting Dr. Cash talked about the work of the Programme Treatment Unit. His direction of this work led to his award in November 2013 as the Institute of Health Management’s Medical Leader of the Year. At the February meeting dietician Judith Beattie and pharmacist Louise Browne talked about the need for sensible diet and sensible adherence to drugs regimes. The quality of all these presentations was excellent, much appreciated by all present, and deserving of a wider audience. I hope that this time next year I can report on higher attendances at members’ meetings.
One of our goals as a charity is to promote organ donation and to encourage people to join the register and tell their families of their wishes. We continue to pursue this goal. The group was represented at Organ Donation stands at the Balmoral Show in May, at the Freshers’ Fair at the University of Ulster in Jordanstown in September and at the Ulster Hospital in November. Gordon Cave was interviewed on Radio Ulster about his experiences as a liver recipient, as well as having his story published in the County Down Spectator. In early March Gordon also attended, alongside Kay Duffy, an event organised by the Flesh and Blood Campaign and hosted by the Roman Catholic and Anglican Primates of All-Ireland in St. Patrick’s Cathedral, Armagh. He addressed this gathering as president of the RVH Liver Support Group as part of the Flesh and Blood campaign’s vision of making organ donation part of the church’s vision for giving throughout Ireland. Dr. McDougall, Gareth Hunter and I spoke to the Organ Donation All Party Group at Stormont about the experiences of liver recipients and their families in November. I also represented the group at a meeting with Health Minister Mr. Jim Wells MLA in January and have given several talks on organ donation to church groups. I realise that these formal efforts at promoting organ donation are supplemented by countless informal conversations by others on the committee, by people in this room and by many of our members, all of whom hold the cause very dear to their hearts.
We continue to be proud of our links with the Children’s Liver Disease Foundation. In October, Jennifer Cairnduff, Rachel Quinney-Mee and I attended their conference, which runs every two years in Birmingham. We appreciated the chance to chat with people who had been affected by liver disease as patients and carers and to hear from a range of medical experts about current research and innovations in treatment We later helped the Foundation set up and run a Circus Skills day for families at the Morton Community Centre in Belfast in November. On that day a number of families met for the first time and gave each other significant encouragement and support, before heading home with children who were slightly more adept at juggling and walking on stilts than they had been in the morning. The next CLDF event for children in Northern Ireland was to have been in Londonderry on 9th May but this has been postponed because the Foundation now wishes to run a full weekend event in November. More details will appear on the website when we have them.
The next members’ meeting that we will be hosting is a lunch at the Seagoe Hotel on Sunday 31st May. Please keep this date free. Full details will be posted before the end of April.
In conclusion, I am pleased to report on a good year’s work in which much has been achieved. I wish you all a safe journey home and health and happiness in the days and months ahead.