The All Party Group on Organ Donation in the Stormont Assembly works to keep MLAs informed of  developments in Organ Donation as they affect people within Northern Ireland.  Chaired by Mrs. Jo-Anne Dobson, MLA for Upper Bann, it meets roughly three times per year and has heard from representatives of a number of charities working to promote organ donation, including the RVH Liver Support Group in November 2014.

The All Party Group hosted a Platform Event at Stormont in the early afternoon of April 20^th.  The purpose of the event was to better inform MLAs of the work of the various charities and the experiences of transplant patients and their carers.  Mrs. Dobson and her Vice-Chair on the All Party Group Mr. Pat Ramsey formally opened proceedings at 12noon.  After that it was up to representatives of the charities to get talking to those MLAs who dropped by.

Representatives from our Support Group with Mitchel McLaughlin, Speaker of the NI Assembly

The RVH Liver Support Group was represented by five of its members – Donald Cairnduff, Gordon Cave, Eileen Hearst, Gareth Hunter and Sharon Millen.  During the two hours at Stormont we were able to share personal stories, to outline the impact on patients of travelling to England for transplant surgery and to showcase recent developments in our work  – the Helpdesk in Outpatients; plans for outreach meetings in different areas of Northern Ireland.

We had the chance to speak at some length to the following MLAs: Mr. Steven Agnew; Mr. Sammy Douglas; Mr. Mark Durkan (Minister for the Environment); Dr. Alasdair McDonnell; Mr. Michael McGimpsey; Mr. Mitchel McLaughlin (Speaker of the Northern Ireland Assembly) and Mr. Pat Ramsey.

The group members with Joanne Dobson and Pat Ramsey, Chair and Vice-chair of the All Party Group

 

It was a most rewarding day.  We left sensing that we had done a good deal to make our work better known at the heart of local government.  Sincere thanks for our invitation go to all on the APG, particularly to Mrs. Dobson and Mr. Ramsey.

AGM 2015

The 17^th AGM of the RVH Liver Support group was held in the Sir Samuel Irwin Lecture Theatre on Thursday 16^th April.  Guest speaker was Professor Nigel Heaton, Director of Transplant Surgery at King’s College Hospital.  60 members and friends of the group were present.

The formal business came first.  The minute of the 2014 AGM and the accounts for the year 2014-15 were approved.  In his Chairman’s Report Donald Cairnduff reflected on a pleasing year’s work, which included a successful first Love Your Liver Campaign in Northern Ireland, registration with the Charity Commission, rebranding to better emphasise the group’s work across Northern Ireland, increased income from fundraising and continued promotion of the organ donor register.  Of particular note were a significant rise in patient care support payments and the setting up of a Helpdesk in Outpatients, which had been opened earlier in the day by the Group’s founder, Kay Duffy.

The full report can be found on this site under ‘From the Chairman’

Dr. Cash conducted the meeting while the committee stood down.  It was re-elected en bloc to serve for 2015 -16: Donald Cairnduff (Chairman); Sharon Millen (Vice Chair); Gordon Cave (President); Kay Duffy (Founder); Eileen Hearst (Secretary); Tom McCready (Treasurer); Jennifer Cairnduff;  Seamus Cunningham;  Rachel Quinney-Mee; and Anya Toner.

Professor Nigel Heaton, special guest at our AGM

Professor Heaton then delivered a fascinating account of the history of liver transplantation in the U.K., current developments and his vision of its future. Of particular concern to  hepatologists at present was the increasing number of young women with liver disease and the mental health and well being of transplant recipients.  Some pleasing outcomes for surgeons were a reduction in the average time of operations (now 3.4 hours); the routine use of split livers, and an increase in the number of living donors, some of whom had come forward as altruistic donors.

He felt that the treatment and recovery of transplant patients needed a new vocabulary that didn’t use unsettling terms like patient, disease and transplant.  And he looked forward to the day, possibly after his retirement, when a surgeon could design an organ on a 3-D printer last thing at night and print it off first thing in the morning before going into theatre.

 

 

A section of the audience at the AGM

    

    The committee for 2015-2016 with guests    

   

Registration with the CCNI

The Charity Commission for Northern Ireland is the independent regulator of Northern Ireland charities.

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.  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.

Help desk and information screen in Outpatients’ clinic

The most important, and yet least publicised part of the work of our group is patient care. There are four of our committee working in this area and they go about their work in a quiet, sensitive and professional manner. Their support is invaluable to our members.We are always making every effort to engage with  liver patients and find ways to enable them to more easily access our services.

Kay Duffy proudly opens the Helpdesk in Outpatients

 

We have 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 make it a reality. It is located directly opposite the lifts in 6B. The desk was kindly donated by

 

Our president Gordon Cave with Sr Esther Mallon

 

The Helpdesk would not have been set up without the advice and encouragement of Sister Esther Mallon and her staff.  Sister Mallon was very supportive at every step and also liaised with Gordon regarding a strict set of guidelines that will be followed by all committee members while assisting at the desk.

The RVH Liver Support Group will be represented by committee members at clinics on Wednesday and Friday afternoons for informal contact with anyone who wishes to speak with us.  This is a significant step forward for us.

An information monitor has been installed in the waiting area of Outpatients on 6B. There is a scrolling information presentation playing on it which will give patients all the information they need.

The launch was very well attended by the medical staff with consultants and nursing staff taking the time out of a very busy schedule to support our efforts to help liver patients.

Kay and Gordon with the kind donor of our Help-desk

The medical staff were out in force to support Gordon and Kay at the launch.

A Northern Ireland wide commitment

We were keen to impress on the Charity Commission 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. Gordon Cave and Seamus Cunningham have worked over the past months on re-branding, including devising a new logo that reflects our role as a charity working throughout Northern Ireland

We have changed our strap line to –

 Patient and Carer support across NI since 1998

 website: www.rvhliversupportgroup.org                               NICC  Charity Number:  NIC 100892

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.

We catch up with transplant recipient Cara Hearst who is now living and working in England.

What have you been up to since qualifying as a nurse in 2013?

After three years of hard work at Queen’s University Belfast, I took the opportunity to travel to Australia and New Zealand. Like a lot of people, after my transplant I had a new lease of life and have since been living life to the full. My sister and I stayed in Dubai for a few days before arriving in Melbourne where we got to meet my 4 year old cousin for the first time, which was amazing. We drove down the Great Ocean Road, road-tripped around New Zealand staying in hostels and had a true Ozzie/New Zealand experience! I also met my boyfriend Andrew, who decided to “chat me up” on a train after watching V8 car races. He’s American, which has meant lots of travelling back and forth to Oklahoma and a trip to Vegas (no, there was no Elvis marrying us in a chapel!). I think a lot of people worry about travelling post-transplant but I just make sure I arrange good travel insurance cover, take plenty of extra medications in case anything goes missing and most importantly, enjoy it! I’ve had a few trips to doctors abroad and they have been very helpful – it helps to have a good travel insurer.

Shortly after returning, I decided I wanted a change of scenery and to start my nursing career in England. I got a job in a fantastic Neurology ward in Southampton where I have learned a huge amount since starting work. Medical/Healthcare courses are hard work physically as well as mentally. I found the 13 hour shifts very difficult at the beginning. I think it’s important to know my limitations and if I get tired doing shift work, I make sure that I tell someone so that they understand why I can get tired easily. Sometimes doing half-day shifts can be easier even though it means working more days each week, including the weekends. I learned the hard way by trying to do too much – you can make yourself ill if you don’t look after yourself at work!

Some people worry about getting infections/viruses from working with sick patients. Yes, I have a supressed immune system because of medication but it doesn’t stop me from doing a job that I love. The medical team in charge of my care advised me that a career in nursing would be fine. As a nurse/healthcare professional, part of the job is to adhere to the hospital’s infection control protocols in order to stop the spread of infection. As long as I stick to these precautions, I don’t get too worried. Obviously, I wouldn’t choose to work on an infectious diseases ward – that would be asking for trouble!

I now attend King’s College Hospital in London for my clinic appointments. It was very surreal going back after such a long time. Waiting in the outpatients room, which is opposite the Liver Intensive Therapy Unit, brought back lots of memories. It also made me extremely thankful for the past 6 years. For anyone waiting for a liver transplant, I am happy to tell you that the staff in King’s are wonderful and make the whole experience so much easier. I have to say though, outpatient’s clinic in the RVH is still hard to beat! I definitely miss all the friendly nurses and the brilliant consultants who dedicate so much of their time to us.

I’ll finish by mentioning my donor Daryl Turley, who is the reason I’m here today. Daryl was sadly killed in road accident aged 13. His mum and dad made the brave decision to donate his organs, saving lives. I have since met Daryl’s mum Lily, as some of you know. She is a wonderful and inspiring lady and I feel so lucky to have become her friend. We both know how fragile life can be and the importance of making the most of it. Stay positive and I wish everyone in the Liver Support Group the best of health.

Very Successful Fundraiser – Thanks to Sean Lavery

Sean Lavery organised a fundraising night which took place on Valentine’s Night in the Seagoe Hotel in Portadown, attended by 360 people.

Eugene Lavery, Sharon Millen, Kay Duffy, Ciaran Lavery, Sean Lavery, Helena Thornton, Nicola Gregg, Emma Kerr and Christine Lavery

Compere on the night was ex St Paul’s Lurgan teacher, Jimmy Smyth who entertained the crowd throughout. Sean was rightfully delighted with the response from all concerned and really made his two months hard work worthwhile.

Sean said “separate draws on the night, a lucky dip, a grand draw and with money made on tickets came to a total of £9,462. Since Saturday night the total has risen again with a steady flow of donations still coming in bringing it over the £10,000 mark which is helped by my just giving page that is www.justgiving.com/Sean-Lavery.  It has over £700 pound on it. The generosity of people is amazing and I am still overwhelmed by it all”.

Sean and Helena Thornton

“The money that is raised will all be used to help people like myself during the hard times of liver transplant journey plus buy equipment that can only help people be diagnosed quicker, that will save a lot of lives.  By all of this I hope to raise awareness of the RVH Liver Support Group and the importance of the Organ Donor Register that for me saved my life and has given me a life with my family again that I nearly lost” Sean went on.

Sharon Millen and Kay Duffy were at the function representing the charity and they too were struck by amazement of the amount raised.

 

Jennifer Cairnduff, a committee member of the Liver Support Group received a cheque from the Communication Workers’ Union (Combined Branch) on 30th January 2015.  This was in memory of the late Shauneen Clarke, a former colleague, who passed away on 11th June 2014.  The money was raised from a Christmas collection.

2nd right: Bob Weatherall (Branch Secretary and National Officer of CWU); furthest right: Jennifer Cairnduff; members of Shauneen’s family, L-R: Karen Green, Ashleigh Green and Sean Clarke.

Larmour family presentation

On Wednesday 14th January, Violet Larmour and her friends Sharon Frazer and Councillor Frank McCoubrey handed over a cheque for £1,700 to Kay Duffy, founder to the RVH Liver Support Group.

The money had been raised from a new year’s ballot organised by John and Violet Larmour and their  family, with help from friends – not least Walter Graham who has worked steadily to raise funds for the group over the past three years.

Our sincere thanks to everyone involved.  And best wishes to Violet for continuing good health following her recent transplant.

The photo shows, from left to right – Donald Cairnduff (Chair RVHLSG), Fred (Staff member of 6D), Violet Larmour, Kay Duffy, Sharon Frazer and Councillor Frank McCoubrey.

The Nicks family from  Whitecross  present  a cheque to Kay Duffy founder of
the RVH Liver Support Group for £1460.96. This money raised was in lieu of
presents for Orla’s 40th birthday. Their daughter Erin had a liver
transplant five years ago

Kay Duffy receives the cheque on behalf of the support group