I am writing to pass on my sincere thanks to  everyone who helped out at CastleCourt on Tuesday.

I felt it was a successful day and was very pleased with the response from members of the public.

The professionals – BLT staff, consultants, the registrar who did the fibroscanning – worked very hard but their professional interaction with individuals was helped enormously by the enthusiastic and proactive approach of everyone who volunteered.

Your contributions on Tuesday went well beyond standing, smiling and handing out flyers.  There  was a friendly and positive engagement with everyone who came our way and a willingness to see gaps that needed to be filled and to take on necessary tasks without waiting for someone to ask you that added significantly to the success of the whole event.

I am waiting for final figures from the British Liver Trust  of numbers who were screened and numbers who were fibroscanned.  These will appear on the website with a full account of the event when I have them.

We will, of course, never know the final outcomes or be able to measure the success of the day in terms of how individual lives were affected.   Suffice to say that if one  person , as a result of his/her being at CastleCourt on Tuesday, can avoid the distress that you all know as patients or as carers, all your work will have been worthwhile.

Founder Kay Duffy with Gordon who was instrumental in bringing LYL to Belfast

Donald, Minister Poots, Gordon, Dr McDougall and Andrew Langford

Health Minister Edwin Poots with Donald Cairnduff, Gordon Cave and the CEO of the British Liver Trust Andrew Langford

 

Seamus Cunningham, Kay Duffy, Gordon and Andrew Langford

Vice chair Sharon Millen promoting the event

 

 

 

Dr McDougall and Carolyn Adgey (Registrar) who carried out the scans

 

 

Volunteers Ivan Johnston and Colin Kirkpatrick

 

Ladies and gentlemen,

Good evening to you all.  You are very welcome to this the 16^th AGM of the RVH Liver Support Group..     

It is a pleasure to welcome Dr. Roger McCorry as our guest speaker this evening. I am very much looking forward to what he has to say later in the meeting about current developments in the field of liver transplantation.

I wish first of all to pay tribute to all the hospital staff in the R.V.H. and to thank them for their dedication and professionalism  – to the four consultants who, as in every other year, helped us to plan the year’s work at a strategy meeting on 9^th May last year; to Sister Moffett, Fred McDermott and the ward staff of 6D;  to Tracy Close and her staff in the Children’s Hospital; to Betty Boyd and her staff in the Programmed Treatment Unit; to all who work in Outpatients and to all who work in any area of hospital  administration that affects our members. We are proud of the links we have forged with them and are grateful for their support and advice in every area of our work.  I would offer on behalf of all present congratulations and best wishes to Dr. McDougall in his new role as Clinical Director of Medicine.

I also wish to pay tribute to the hard work and dedication of the committee, all of whom are keenly committed to the objectives of the group and who work hard and effectively within their own areas of responsibility.  This all makes my role as chair much easier.  I am continually humbled by the fact that the work goes on steadily at times when some of them may be struggling with ill health themselves or with the ill health of those for whom they care.  One of the most satisfying outcomes this year was the return of Kay Duffy to full involvement in adult patient care.  The lowest moment for us all as a committee was the passing of Siobhan Gough on 10^th March.  Siobhan had only served on the committee since April 2013 and while chronic ill health ensured that she could never become fully involved with our work, she impressed us all with her resilience and good humour in the face of serious illness.  Attending her funeral in March was all the more poignant for knowing that we had attended the funeral of Carina Matthews some five months previously. Siobhan had replaced Carina on the committee after last year’s AGM.

We lost several other members during the course of the year and my condolences and best wishes go out to their families and loved ones.  The sadness of these times was somewhat balanced  by recognising that a positive view of the world at difficult times is characteristic of so many of our members.  This was evident at the Odyssey Complex on Saturday 21^st September when we assisted the Children’s Liver Disease Foundation in running the biggest family 10 pinbowling event that they have yet staged. This was a day when we saw at close hand the dignity and courage of so many children and their parents.  It was evident at the members’ carvery lunch at the Seagoe Hotel on 17^th November when 64 people met for the afternoon, some for the first time, and shared stories and experiences.  It is evident in dozens of informal contacts within our membership that complements the excellent work on patient care of the committee.  Two years into my time as chairman, I am beginning to see that the role’s emotional journey   is marked at every stage by troughs of sadness and peaks of inspiration – and that while the troughs are low, the peaks are very high.

You will have received a copy of the accounts for the year earlier in the meeting.  These accounts are now with an independent scrutineer, Mr. Alastair White, for review.

 During the year we received £19,325 from friends and supporters of the group – from personal donations, charitable givings from organisations, sales of items and one-off fundraising events.  As a committee, we remain in the fortunate position of not needing to plan our own fundraising projects.  This enables us to focus fully on the central goals of the group, most importantly patient care.  The willingness of so many to support us financially is something for which we remain very grateful.   

Since the AGM of 2013 we have spent £ 4,800 on patient care and £ 17,712 on hospital equipment. In August we purchased 4 CVSM monitors for Ward 6D.  In November we paid for insurance on the fibroscanner and in February we purchased 2 blood sampling stools and 2 blood sampling chairs for the Hepatitis C nurses.  These last resources were purchased following donations from the Joe Watson Foundation.  This Foundation in memory of Joe, a Hepatitis C patient who passed away in July 2013, has also, through the hard work his widow Carol, his sister Ann and other friends and family, provided the Hepatitis C nurses with pill boxes, scales and a laptop for public education.  It has been a pleasure to assist Carol and Ann with sourcing, purchasing and VAT exemption during the year and I wish the Joe Watson Foundation continued success.

Our website has recently been refreshed.  The technical work was done by Gareth Buchanan, who was monitored at every turn by Seamus Cunningham, the committee member who keeps the site updated.  I am grateful to Seamus for looking after the site and to my vice-chair Sharon Millen for looking after our Facebook page.  I hope that when you visit the site you will find it easily navigable and the content clear and interesting.  The site’s address is www.rvhliversupportgroup.org and the Facebook page can be found at www.facebook.co.uk/rvhliversupportgroup.  Please visit both; neither as yet has the level of traffic that I think they deserve. 

We had two excellent members’ meetings this year.  In October Dr. Cadden delivered a detailed and highly engaging account of the work done on the ward during the previous year and of the consultants’ plans for the future.  In February two clinical psychologists, Dr. Chris Tennyson and Dr. Melanie Wolfenden, answered a series of questions about the importance of mental attitudes in healing.  This meeting was notable for the way in which a number of the audience spoke candidly about their own psychological struggles and triumphs following transplants.  As ever, we are very fortunate that busy professional people are so willing to speak at members’ meetings and to ensure that, dare I say it, members of this group are at  least as well informed about current developments in their field of medical interest as members of support groups in other fields.

We continue to be involved in the work of the Northern Ireland Transplant Forum.  This is an umbrella group of charities with an interest in raising public awareness of organ donation. As the Liver Support Group’s representative on this Forum I have, over the past year, helped out at organ donation promotion stands in schools and universities, delivered presentations to school children in Harmony Hill Primary School and Bangor Academy and worked with North Down Council to facilitate the design and construction of a bench in memory of donor families.   As a charity we hosted a pitch at the Forum’s Gift of a Lifetime football tournament in September.  I was fortunate enough to be invited to a meeting with the First and Deputy First Ministers on 25^th March.  At this meeting Mrs Jo-Anne Dobson MLA  presented the case for her Private Member’s Bill to introduce as soft opt-out system in Northern Ireland. It was a privilege to be able  present some of the arguments in favour of her bill but also to give our two most prominent politicians an idea of what the experience of waiting for and receiving a liver transplant is like for patients, their families and carers. 

While we work steadily within Northern Ireland only, it is hard not to be aware of the national context of our work.  I was made very aware of this national context when I attended, with some 30 other delegates, the British Liver Trust’s Support Group Conference in Birmingham in November.  As you will know, during the past couple of years liver disease has been in the news.  Sporadic reports are delivered with plenty of drama and wide-eyed concern – and then the whole issue goes away until the next time.  So, Dame Sally Davis, CMO for England, announces the rise in liver disease in the United Kingdom at a time when it was falling across Europe as a major concern in her report of November 2012. In March 2014 the national news again carries a major feature on the rise in liver disease in the United Kingdom at a time when it was falling across Europe.  Data from Northern Ireland seems to support these claims; in 2012 -13, there were 5, 1000 admissions to hospitals for liver-related illness, a rise of 21% on 2011-12, a year which had seen a 28% rise on figures for 2010-11.

And yet, at a time when GPs, hospital staff and transplant teams are battling to save and restore the lives of increasing numbers of people, those who control strategy and funding don’t seem to be battling with quite the same passion.  This would seem to be the case when we hear that interviews for all clinical directors’ posts in NHS England have a patient on the panel – apart from for the Liver/Gastroenterology post.  When we hear that all European countries have universal vaccination for Hepatitis B, apart from Greece and the UK.  When we hear that the British Government reneged, with hardly a word of complaint from anyone, on its pledge to introduce minimum pricing for alcohol.  And when we hear that if you have liver disease in Europe you invariably see a hepatologist – whereas in the U.K. you just might, because there aren’t enough of them in post.

We are a small charity operating solely within Northern Ireland and there is little that we can do to influence any of this.  It is, however, very disappointing that the recognition by health professionals of how serious current levels of liver disease are  and the tireless work of medical staff to cope with it do not seem to be matched by a commensurate commitment on the part of government and NHS management to tackle perhaps the most serious social health issue in these islands.

 In the light of all this, it is particularly pleasing that we will very soon be involved in a major campaign to raise public awareness of liver disease.  Over the next 6 weeks we will be assisting the British Liver Trust as they prepare to bring their Love Your Liver campaign to Northern Ireland for the first time.  The British Liver Trust has been running this campaign in Great Britain for several years and this 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 some signs of 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 said, ‘Getting this early warning not only helps the individual but may save the NHS millions.’

The campaign will run from 9 a.m. until roughly 5 p.m. on Tuesday 20^th May at Castlecourt Shopping Centre.  We are grateful for the full support of the consultants and look forward, after 16 years of  working steadily on care and healing, to being involved for the first time in a major project aimed at prevention.

 I will finish by thanking you for your support tonight and throughout the year.  I wish you a safe journey home and health and happiness until the next time we meet as a group. 

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Ladies and gentlemen,

A warm welcome to you all to this the fifteenth Annual General Meeting of the Royal Victoria Hospital Liver Support Group.  Your attendance here tonight gives me a strong sense of your interest in and support for the work that we attempt to do as a charity.  I am also pleased to welcome representatives of the medical and nursing staff at the Royal.  As ever they work tirelessly with patients with liver disease and their help and advice, willingly given in the middle of the intense and highly pressurised work that they tackle daily, is something that I value highly.  I am proud of the strong working relationships that we have with hospital staff and will work hard to consolidate these relationships in the year ahead.

I am delighted to welcome Dr. Michael McBride, Chief Medical Officer of Northern Ireland, as our guest tonight.   Dr. McBride has had a distinguished career in health care, in health education and in leadership and management within the Northern Ireland Health Service, since graduating with distinction from Queen’s University in 1986.  He was appointed as Consultant Physician in HIV medicine in 1994, as post-graduate clinical tutor for the Royal Hospitals in 1996 and as Director of Education in the Royal Hospitals in 2000.  On his appointment as Chief Medical Officer for Northern Ireland in 2006 he set patient welfare and safety at the heart of his vision for the role, stating that he would ‘…work with patients to ensure that they receive the highest quality of care and to keep key issues, such as patient safety, high on the health service agenda.’

I wish Dr. McBride every success in his pursuit of these goals and thank him particularly for his interest in the work of this charity over the years, not least in support of our efforts to raise money for the fibroscanner in 2008.  Dr. McBride, you are most welcome this evening and we look forward to hearing what you have to say later in the meeting.

Tonight we say goodbye to two committee members. Carina Matthews was co-opted onto the committee in March 2012 with responsibility for written communication with members.  Unfortunately, in the short interim, she has been very unwell and has had to stand down.  I wish Carina a speedy return to sound health.  Johanne Tinsley joined the committee following the 2010 AGM and took on the role of Treasurer for one year only from September 2012.  She agreed to this with great reluctance, having had no experience of managing accounts beyond some work undertaken in her local church.  This initial reluctance proved quite unjustified, as was evident in the meticulous way in which she kept track of our income and expenditure month by month.  Her attention to detail in the managing of money was complemented by the sensitive and grateful manner in which she communicated with those who had raised funds for our work.  Johanne has served us well and will be much missed.  I wish her every happiness and success with the new challenges that she will now be facing in her life.

During the year we were delighted to welcome Kay Duffy, our founder, back onto the committee.  Eileen Hearst was co-opted on to the committee as Secretary, a post not filled when we opened it to members ahead of last year’s AGM.  We also co-opted Tom McCready as Johanne’s successor in the role of Treasurer.  This leaves one vacancy on the committee for which we have only one nominee, whose name will be placed before the meeting when we move to the election of next year’s committee.

As mentioned earlier, we continue to have strong working relationships with the medical staff in the hospital.  The consultants, Drs McDougall, Cadden and Cash, have always made time in their busy schedules for the work of the group, be it with advice on spending proposals, advice on the viability of plans for future work, attendance at and contributions to our members meetings and providing material for  the group’s news sheet, The LIST. Sister Moffett, Isabel Stewart, Karen Patterson and Kim Browne in the Clinic have also remained strong supporters of our work despite the disruption to work on the ward during the past year brought about by the move to a temporary base in 4D and the subsequent refurbishment of this ward. I wish all of them well for the challenges ahead and assure them of our continued support.

We continue to offer financial support for members.  This year we made 8 full payments of £400 to patients who went to London for assessment and transplant, 4 payments of £200 to patients who went to London for assessment and 2 payments of £200 to patients who went to London for transplant.  These figures are down on past years and we suspect that in some cases the best efforts of the ward staff in Belfast may not have secured the awareness of the group that we might hope for.  We will be monitoring this trend carefully and contacting King’s to urge a keener advocacy of our potential for support at their end.  We contributed £1, 303 towards BLT literature for patients in the clinic and £2, 000 towards the Children’s Hospital’s Helping Hands MRI scanner appeal.  Discussions with Sister Moffett about imminent spending priorities are ongoing and we hope, given the agreement of the consultants, to fund these priorities in the next few months.

We are working hard to improve communication with members.  I am grateful to Seamus Cunningham who maintains and refreshes our website, as he has done for many years.  Thanks to Sharon Millen, who will take on the role of Vice-Chair on next year’s committee, we have set up a Facebook account and would encourage all members and friends of the group who use social media to visit our Facebook page on the website; as yet this has not been accessed as much as we would like.  Our news sheet The LIST has, I think, moved on from rather piecemeal beginnings to become a more coherent publication, concentrating on two main objectives – celebrating the courage and resilience of our members as well as providing sound medical advice.  I would still like to see more of the content suggested by and submitted by members and would ask you to contact me about anything that you would like to be included, or better still, e-mail me the finished article.

I have mentioned before the extraordinary hard work and ingenuity of members and friends of the group when it comes to raising money  in support of our work.  I will continue to do so because it never ceases to impress me.  We are regularly in receipt of donations from three main sources.  Firstly personal projects, for instance drama productions, parachute jumps, coffee mornings and the sale of everything from knitted teddy bears to poetry anthologies. Secondly money in lieu of flowers from funerals.  And thirdly, money from major events, such as the gala dinner at the La Mon Hotel in January.  As a committee, we remain deeply grateful for all these fundraising efforts on our behalf.

This year we enjoyed unprecedented and unsought publicity through the endorsement of Bangor Football Club.  Thanks to the efforts of Walter Graham and Trevor Best, Commercial Director of the club, the team carried our logo on their shirts free of charge throughout the past season.  It was very encouraging to see this logo from time to time in action shots from Monday night’s sports pages and to know that our name, and by implication the nature of our work, was being recognised in football grounds throughout   Northern Ireland.

Promoting awareness of the need for increased levels of organ donation has been a key objective of the group for some time but in recent years we have worked with other charities with an interest in organ donation to pursue this objective as part of a team.  The ad hoc group on which we are represented for this work is called the Northern Ireland Transplant Forum.  Other charities represented are the Northern Ireland Transplant Association, the Northern Ireland Kidney Patients Association, the Northern Ireland Kidney Research Association and Transplant Sport NI. I represent the Liver Support Group on this body and the main thrust of its recent work has been to get the message about organ donation into schools.  We have discussed ways of achieving this with the Public Health Agency and a representative of the Department of Education and made several presentations in schools, including one recently in Bangor Academy that reached some 900 children in a morning.  This is relatively new work for us but more traditional ways of raising awareness of the donor register go ahead as ever; the Liver Support Group was represented at stalls set up to encourage people to sign the register at Freshers’ events in the University of Ulster in Jordanstown, in the Belfast Metropolitan College of Art in September and at Castlecourt in January.

You will all be aware of the public debate about whether or not Northern Ireland should move to an opt-out system of organ donation.  The Health Minister intends to conduct widespread public consultation on this issue and we intend to be ready for it.  The committee has recently agreed a response, based on the results of the survey we conducted amongst members in 2011.   This will go on to our website and I would welcome any suggested amendments or additions to its text from members when it is posted so that an agreed response is in place.

Several events took place during the year aimed at supporting and encouraging members. We held a carvery lunch at the Seagoe Hotel in Portadown in January, attended by 80 guests and an away-day at the Corrymeela centre in Ballycastle in early April.  Only 35 people attended this second event but the low numbers belied the warmth and the intensity of the interaction between patients, families and carers.  Strong bonds of mutual respect and support between people who may not have previously known each other well, or at all, were forged throughout the day, as had been the case earlier in the year at Seagoe.   Several of our members attended excellent self-management workshops run by the PBC Foundation in March – one in Omagh and one in Belfast.  Our members’ meeting in October was addressed by medical staff from the Birmingham Children’s Hospital and the members’ meeting in February was addressed by a panel of G.P.s, who talked about their experience of providing primary care for patients with liver disease.

Some of you will be aware of the interest generated by the report of the Chief Medical Officer for England and Wales, Dame Sally Davies, published last November.  It certainly came as a surprise to me to hear that liver disease had made headline news on the Today programme on the morning when the report went live! Dame Sally’s report cited the rise in rates of liver disease in the United Kingdom, at a time when they were falling elsewhere in Europe, as a major concern.  In the light of this it is very disappointing that despite the efforts of this group, mainly through Gordon Cave’s involvement in the work of the British Liver Trust, to lobby for a national strategy to deal with the devastating impact of liver disease in all its forms, plans for such a national strategy have come to nothing.

Patient care remains our single most important goal.  While everything I have reported on so far impinges on patient care, the really telling work is done through phone calls, e-mails, text messages and visits made by the members of committee entrusted with this work.  It is delicate, sensitive and unseen work and will never receive the same coverage in a report like this, in The LIST or on our website, that it merits.  It will, however, remain our key objective as a charity and I pass on my thanks and appreciation to Sharon Millen and Gordon Cave (adult support), to Jennifer Cairnduff (support for members between 18 and 30), to Rachel Quinney-Mee (support for children) and to those outside the committee who have responded from time to time to our requests to contact someone in need of a listening ear.  As ever, the work we do brings a range of conflicting feelings. The relief that comes with hearing of those who have battled through hardship is often tempered with the distress of knowing that others have slipped into ill health or have passed on.  My deepest sympathy goes to all who have lost loved ones to liver disease during the past year.

I finish by thanking you all again for your attendance tonight.  I wish you a safe journey home and health and happiness in the days ahead.