Chairman’s report 2013 AGM

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.