Our founder is awarded an OBE

Kay Duffy OBE

 

I am absolutely  delighted to announce that our extremely hard working, dedicated and passionate founder of the RVH Liver Support Group, Kay Duffy, made the Royal Honours List 2018 and has been award an OBE for her outstanding and steadfast support, help and advice that she has provided to liver patients, their relatives and carers in Northern Ireland throughout the past twenty years since founding the Group.  I am sure you will all agree that this is very much earned and extremely well deserved.

I, as Chair of the Group and a personal friend of Kay’s am so delighted that Kay’s hard work and dedication over the years as been formally recognised.

Huge congratulations Kay – absolutely fantastic news!  Again – very much deserved and well done!!!  Sharon

 

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.

Chairman’s Report 2015

Ladies and Gentlemen,

The chairman, Donald Cairnduff, delivers his report

You are all very welcome to this the 17^th 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 20^th 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 9^th 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 31^st 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.

 

 

 

 

 

Bangor Academy Crest

On 6 March an assembly on organ donation was held for 3^rd Year pupils of Bangor Academy.  Roughly 200 pupils heard stories from people who knew from experience what organ donation entailed – as carers, recipients or donors.

I told the story of my son’s life-saving transplant following acute liver failure. 

Ruth and Ronnie White, respectively a kidney recipient and kidney donor, talked about their part in the U.K.’s first series of  synchronised kidney transplants that involved 3 donors.

And Mary Sweeney talked about her decision to donate her son’s organs following his death in a car crash.

We were made very welcome in the school, as always (it was our third visit).  The pupils could not have been more receptive.  Below are reflections from a few of them on the stories they heard.

 Today we went to an assembly about organ donors.  There was a man who talked about his son being very ill and he had to go on several planes to get to a decent hospital. His son had to put on a cap to cover his pale face so that the woman at the airport would let him board the plane.  He made it to the hospital and got the transplant that he needed.  He lived!

The other story was quite sad.  A mother told us about her son.  He had been out in his car and was involved in an accident.  He was rushed to hospital and passed away shortly afterwards.  Her children had to go for counselling and she and her husband were very upset.

Her son’s organs got donated to people in need and they lived. The woman said she was happy he was an organ donor because in a way he lives on.  I can’t imagine losing a close family member. The pain would be so hard.

I asked my mum about becoming an organ donor.  She said it was a good thing but she didn’t really like the idea of organs being taken out of her children when they have died.  My dad wants to be an organ donor because he thinks it is a great idea and so do I.

 ***************************************************************************************************

 We went to a special assembly about organ transplants.  Two men and two women came in and talked to us about how organ transplants had saved their own lives, a family member’s life or the lives of people they don’t know.

One of the women talked about how she needed a kidney transplant.  She explained to us that the doctor came into the ward and said to her that there was a patient in England who needed a kidney.  The test showed that the kidney was the same type as her husband’s. So her husband’s kidney went to this person and another kidney from England went to her.  It saved her life.

There was another man who talked to us about his son and him going to Africa.  The son fell ill and didn’t feel well on the day they were due home.  They managed to get him onto the plane by pushing a baseball cap over his face.  When they got home he was rushed straight to hospital.  Later they found out that he needed a liver transplant.  He got a transplant the next day and is now doing well.

A woman told us a story about her son.  Shortly after he had celebrated his 18^th Birthday, he was involved in a serious car accident in Portavogie.  The road was slightly slippery that morning and he just lost control.  The lady’s husband was diverted past the accident but he didn’t notice that it was His son’s car. One of his mates phoned his mum and 999 for help.  Her son died instantly because of the impact of the car hitting the wall.  He was an organ donor and his mum still believes that part of her son is still living today.

They were very powerful and emotional stories of how becoming an organ donor could save someone’s life.  After listening to them, I would consider becoming an organ donor.

 ****************************************************************************************************

An impressive view of the school

Last Thursday when people came in to talk to us about organ transplants, it was very emotional because they were talking about people they knew who had an organ transplant that saved their lives.

There was one woman who lost her son in a car crash and he donated his organs and saved 5 people’s lives.  She said you never get over the death but you learn to live with it and it is a bit easier knowing her son donated his organs and saved other people’s lives.

It shows how much you take for granted and how quickly you can lose it.  When I came out of school that day, I told my family I wanted to be an organ donor. 

[/fusion_builder_column][/fusion_builder_row][/fusion_builder_container]

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. 

[/fusion_builder_column][/fusion_builder_row][/fusion_builder_container]

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.