RVH Liver Support Group             Annual Report  (Donald Cairnduff – Chairman)                               AGM April 2016

Ladies and gentlemen, I am pleased to present  my fourth annual report as chair of the RVH Liver Support Group.

You are all very welcome to this our 18^th AGM.  It is a particular pleasure tonight to welcome our chief guest, Dr. Michael Heneghan.  Dr. Heneghan is a consultant hepatologist and transplant physician at the Institute of Liver Studies in King’s College Hospital.  He has arrived at this position following a journey of about 8,000 miles – via University College Dublin, an initial stopover at King’s College Hospital and then to Duke University Medical Centre in North Carolina, where he worked as Medical Director of Liver Transplantation and Assistant Director of Medicine.  He will be well known already to some of you from  clinics.  I very much look forward to his presentation later in this meeting.

The past year has in some ways been a sombre one.  We lost three past committee members who had served the Group well.  Bill Weatherall approached all discussions in committee with an old-fashioned courtesy and a calm objectivity that could spot practical flaws in apparently excellent ideas.  Bill’s contributions kept our planning anchored in the possible.  Ivan Johnston was enthusiastically involved in the planning of the 10^th anniversary gala dinner and continued to work on our behalf after he stood down as a committee member, not least as a volunteer at the Love Your Liver campaign in May 2014.  Mary Wilson was a highly organised treasurer with a sharp eye for financial detail.  However, she saw her role as more than balancing the books.  Mary had a compassionate concern for members who were struggling physically and emotionally and her stewardship of finance was always grounded in a deep humanity.  We miss these people and wish every comfort and blessing to their families and friends, as we do to the families and friends of all associated with the group who have lost loved ones over the past year.

We are just over a year past the first anniversary of the opening of the Helpdesk in Outpatients.  The Helpdesk has been manned by committee members every Wednesday and Friday since then, bar those very occasional afternoons when clinics were too small or cancelled.  Our aims are to provide a wide selection of literature on liver conditions published by the British Liver Trust for patients and to make contact with as many as possible who might wish to avail of the our support.  The first year has posed challenges for this work, not least in treading a very fine line between engaging with those who may want further contact with us and keeping a sensitive distance from those who patently do not.  However, review meetings with Sister Esther Mallon have approved our way of working and we have made great strides in reaching people who otherwise might not have heard of us.  As of Friday 15^th April 741 contacts with patients and carers have been noted.  Many of these have led to discreet practical and emotional support in follow-up phone contact with committee members responsible for patient care.  Some have led to closer involvement with the Group through attendance at meetings and receipt of mailshots.  Some have led to financial assistance for patients who have been called to King’s or to Birmingham Children’s Hospital.  Patient care payments have again increased significantly. The figure I reported last year of £9, 800 was more than double the previous year’s.  This year’s figure of £14, 600 surpassed that by 48% and by exactly the total amount spent on patient care payments in the whole of 2013-14.  The Helpdesk has certainly worked well in its first year.  Our challenge now is to sustain and improve on that work next year and beyond.

During the year we have also taken steps to ensure that increased awareness of our work in Outpatients is complemented by increased awareness of our work in Ward 6D.  Gordon Cave liaised with Sister Moffett in 6D to agree installation of a monitor that shows the different facets of our work on a permanent loop and the setting up of new leaflet holders to allow access to our publicity literature and to BLT leaflets on different forms of liver disease.  We did not receive any requests for hospital equipment or resources last year.  We are currently, however, planning a significant financial donation towards the refurbishment of the so-called glasshouse in Ward 6D as a relatives’ room and are sourcing a tablet for the downloading of Apps that will allow patients with suspected viral encephalopathy to complete diagnostic tests before they are seen by consultants.  I hope to report in more detail on these two projects at the 2017 AGM.

During the year we held two successful members’ meetings which showcased work in areas of the RVH with which many of our members and friends will be very familiar.  The October members’ meeting featured presentations on the history and current work and aims of Outpatients from Deputy Sister Gillian Boyd and Staff Nurse Debbie Walker, as well as presentations on the work of the Programmed Treatment Unit from Sister Betty Boyd and Staff Nurse Geraldine Casey.  The February meeting concentrated on the ongoing work of Ward 6D with presentations from Assistant Services Manager Angela Costello, Ward Sister Sharon Moffett and Health Care Support Worker Stephen Meehan.  We held one outreach meeting in the Waterfoot Hotel in Derry on 19^th January, hosted by Sharon Millen, Rachel Quinney-Mee and myself.  While we were disappointed by the low turn-out, we were encouraged by the sustained and intense conversations that the evening generated.  Around 90 members, families and friends attended another successful carvery afternoon at the Seagoe Hotel in Portadown on 24^th May.

We had been aware for some time that things change quickly at King’s College Hospital and that advice which we give to adult patients and their families, on the phone or on the website, might not always be in step with these changes.  To that end Kay Duffy and I spent 24 hours in London in November reacquainting ourselves with the hospital and with services most relevant to patients and carers from Northern Ireland.  Martin Vaux, chairman of the Listen charity, showed us the exterior of the new Listen Lodge accommodation on Denmark Hill and a chance encounter with a carer from Northern Ireland in a hospital corridor allowed us to see its interior, very impressively decorated and furnished with money from the Listen charity.  We spoke to staff in Todd Ward, the recently opened Howard Ward, the Patient Advice and Liaison Service, Uden’s Funeral Directors, Wendy Littlejohn who is in charge of Transplant Co-ordination Services, Social Worker Paul McKie and Paula Blanchette from Bereavement Services.  At the end of the visit we knew considerably more about King’s and they knew considerably more about us.  The Frequently Asked Questions section of the website has been extensively revised in the light of our findings and I am sure that practical advice for patients is consequently more reliable.

Unfortunately the temporary halt to meetings of the Northern Ireland Transplant Forum, where charities committed to the promotion of organ donation met to co-ordinate their efforts, has led to less formal work on the promotion of organ donation last year than we would have liked.  One notable exception was when we accepted, alongside several other local charities, an invitation from Jo-Anne Dobson MLA to set up a stand at the Platform Event on Organ Donation at Parliament Buildings on 20th April.  The Group was represented by myself, Gordon Cave, Sharon Millen, Eileen Hearst and Gareth Hunter.  During two hours there we had significant conversations with visiting MLAs; we spoke to Mrs. Dobson, who hosted the event, Pat Ramsey (SDLP) vice chair of The All Party Group on Organ Donation, Speaker Mitchel McLaughlin (Sinn Fein) , Mark Durkan (Minister of the Environment), Dr. Alasdair McDonnell, (the then leader of the SDLP), former Minister of Health Michael McGimpsey (UUP), Steven Agnew (Green Party) and Sammy Douglas (DUP).  We were able to talk in depth about the experience of liver patients before, during and after transplantation outside of Northern Ireland and the life-enhancing impact of donation on patients and carers alike.  It was also an excellent opportunity to showcase the work and the goals of this charity to people at the heart of government.

Earlier in this meeting Mr. Alastair White’s appointment as independent scrutineer of the accounts was approved.  The accounts will be examined by Mr. White over the next few weeks prior to our submitting them to the Charity Commission for their approval.  During the year we were informed by our bank that in the event of a financial institution collapsing, the maximum savings that could be reclaimed by any single organisation was £75,000.  In the light of this highly unlikely but not impossible outcome we have transferred £30,000 to a new account with the Progressive Building Society.  It is hoped that this will generate some extra income even in the present climate of low interest rates while still keeping public money as secure as possible.  That we were alerted to the need for this in the first place and that we set up the account so promptly in the face of administrative hurdles and a culture in which financial organisations don’t seem to want money from charities, is due to the methodical and highly efficient work of our treasurer Tom McCready.  I am grateful for him for the dedication and efficiency with which he goes about his work because it makes my role as chair so much easier.

If you simply substitute where necessary the word ‘her’ for ‘his’ in that last sentence, it is a sentence that would apply to every member of the committee.  I am constantly grateful for the dedication and efficiency with which they all go about their work because it makes my role as chair so much easier.

Kay Duffy our founder is heavily involved in adult patient care.  She spends unseen hours on the phone with people who are experiencing distress, elation and every conceivable emotion in between.  The regular reports I hear from people about the strength and comfort they have derived from these conversations is testimony to the sensitivity and humanity with which she deals with everyone.  Kay has been ably assisted this year by Anya Toner, who helps collate records of patient contact and who is becoming increasingly more involved in personal contact with patients.  Similar sensitivity and humanity is evident in the excellent patient support offered to families of children by Rachel Quinney-Mee and Jennifer Cairnduff.  Jennifer has taken on the bulk of work on the Helpdesk on Wednesdays over the past year, with Kay taking on most of the Friday work, although other committe members step in regularly.  Gordon Cave, our President, is responsible for press and media contact.  He gave an excellent account of the work of the Group during an interview on Belfast 89 FM on 24^th November.  His strategic vision, moulded through a career in the Civil Service and through his involvement with this charity from its inception, is invaluable for our planning.  The practical wisdom of another past chairman, Seamus Cunningham, is very useful in keeping our planning grounded.  Seamus also does a huge amount of unseen work in comparing patterns of expenditure from one year to the next, co-ordinating fundraising and maintaining our website.  Eileen Hearst our secretary minutes meetings with remarkable clarity and precision.  Sharon Millen our vice-chair looks after the Facebook Page and our members’ database, as well as informing the committee of current developments in academic research into liver conditions.  I am grateful to them all, particularly so at the end of a year in which most of them have faced difficult times with their own health or with the health and well-being of those closest to them.

My gratitude to the committee is supplemented by my gratitude to many others.  I want to acknowledge these others because the work of this charity could not go ahead without their support.  As ever, the consultants, Sister Sharon Moffett and all the Ward staff on 6D have dealt with us courteously and continue to inform patients of the support we can offer.  Sister Esther Mallon and the staff on Outpatients have made us very welcome and given us a sense that our work complements the professional care that they offer, rather than being something detached from it.  Dozens of people continue to fundraise on our behalf and every penny of the funds they secure, be it £9,000 from the Tullylagan Vintage Owners’ Association, who chose us as their charity of the year for 2014-15 or £20 from a collection tin, is deeply appreciated.  Finally, I am continually appreciative of the many people who do our work for us all the time, sometimes in ways that I never hear about.  I know that the formal patient support of the committee is complemented by informal conversations amongst our members and their families and that patient care is more widespread than we can ever track.  I know that organ donation is promoted by our members and their families all the time – in casual conversations, in public talks and in social messaging campaigns.  You will be glad to know that this report is nearly over. However, if I had been able to deliver a comprehensive report of everything being done to pursue the goals the RVH Liver Support Group, none of us would have been going home tonight.

I would like to finish with farewells to three medical professionals who have moved on from the posts through which they were known to many of us. Professor John O’Grady is retiring as Consultant Hepatologist at King’s.  The Group marked his departure with a farewell lunch, organised by Gordon Cave and Kay Duffy, on 5^th February, at which Kay presented him with a glass plaque carrying the O’Grady coat of arms.  Dr. Pat McKiernan moves on from his post as Consultant Paediatric Hepatologist at Birmingham Children’s Hospital, where he has worked since 1991, to the children’s hospital in Pittsburgh.  And Isabel Stewart has retired from her post as Specialist Hepatitis Nurse in the RVH.  I wish all of them well as they move on to new phases of their lives.

Ladies and gentlemen, once again thank-you for being here tonight and thank-you for your patience during the business so far.  I hope you enjoy the rest of the evening and wish you well until the next time we meet.