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.

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 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.

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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. 

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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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