Category Archives: Latest News

Opening of Relatives’ Room

We reached another landmark for the RVH Liver Support Group on 15 September 2017 when Kat Duffy officially opened the new Relatives’ Room in what was known as the Glasshouse in 6D. We part funded this project and are very proud to be associated with it. This is our next project to help those with liver disease and their carers since the provision of the very successful Helpdesk and information monitors.

A few photos from the official opening

Kay Duffy cuts the ribbon at the official opening as Dr McDougall, Sr Sharon Moffett and Angela Costello look o.

Kay receives a bouquet of flowers from Angela Costello, with Sharon Moffett.

Kay receives a bouquet of flowers from Angela Costello, with Sharon Moffett.

Kay Duffy cuts the ribbon at the official opening as Dr McDougall, Sr Sharon Moffett and Angela Costello look on.

 

The official opening party are joined by Donald Cairnduff and Fred McDermott (Transplant Co-ordinator)

The official opening party are joined by Donald Cairnduff and Fred McDermott (Transplant Co-ordinator)

A BOATFUL OF MIRACLES

Residential at the Discovery Share Village

The RVH Liver Support Group held its first overnight residential  at the Discovery Share Village on Upper Lough  Erne on Saturday 23rd to Sunday 24th September.  50 people attended from 12 families.  These families were linked by their experience of caring for a family member seriously ill with a liver condition, often over a long period of time.  In most cases this family member was a child.

Saturday’s activities included banana boating (where the speedboat driver seemed much more keen to pitch the Benson family into the freezing lough than the other group taking part), raft building (where both completed rafts stayed intact when they were rowed off into the lough) and T shirt design.  In the evening there was a fiercely competitive Fussball tournament and videos screened for children over supper.  On Sunday morning some took a sedate two hour cruise on Upper Lough Erne while the more active went kayaking or mountain-biking.   The weekend ended with a relaxed Sunday lunch during which Caylan Benson did the parents of the younger children a massive favour by tiring them out with a high-speed game of hide-and-seek.

The activities, very well led by Jarlath and his team of instructors, were great fun.  But the richest experience of the weekend was the sharing of powerful conversations about illness, recovery and their impact on families.  At the end of the lough cruise on Sunday morning there was talk of the inspirational courage and resilience of children who had come through brutal illness, and in some cases were still dealing with it.  It was suggested that A Boatful of Miracles might be a fitting headline for the weekend.

The committee was represented by Rachel, Anya, Jennifer and Donald.  Huge credit goes to Rachel for her hard work in setting up the event and the calm and sensitive way in which she led it.

 

Recent cheque presentations

Here are two recent cheque presentations made to the Group by our supporters.

 

Kay Duffy receives a cheque from Drew Holmes on behalf of the Grouproup

Kay Duffy receives a cheque from Drew Holmes on behalf of the Group.

Paul Kearney makes his presentation to Kay Duffy, founder of RVH Liver Support Group

Paul Kearney makes his presentation to Kay Duffy, founder of RVH Liver Support Group

WHO CARES FOR THE CARERS?

 40 members and friends of the Group braved Storm Doris on the evening of Thursday 23rd February for the second members’ meeting of the year.

Guest speakers, l-r, Kay Duffy; Lyn Campbell

Guest speakers, l-r, Kay Duffy; Lyn Campbell

September’s meeting on the theme ‘Who Cares?’ had looked at the experiences of those who care for family members with liver conditions.

The February meeting developed this theme by looking at help that is available for the carers themselves on their often lonely and stressful journey.

Lyn Campbell of Carers NI explained what was involved in undergoing carers assessments and outlined some sources of financial support, as well as programmes to allow carers  some time away for themselves.

Kay Duffy, founder of the RVH Liver Support Group, spoke of her experiences over 18 years of providing practical advice and emotional support for carers, particularly those travelling with patients to London for assessment or transplant surgery.

Both presentations were well received by the audience.  Several spoke warmly of how Kay and other committee members involved with patient care had helped them through difficult times.

The key message from both speakers was the need for self-protection: you’ll not look after a loved one if you don’t look after yourself.

 

 

 

 

Cheque Presentation From Ballymoney Soroptomists

Presentation from left Donald Cairnduff, Cherril Blair and Beth Lindsay (Ballymoney Soroptomists), and Kay Duffy

Presentation from left Donald Cairnduff, Cherril Blair and Beth Lindsay (Ballymoney Soroptomists), and Kay Duffy

Beth Lindsay, President of the Ballymoney and District Soroptimists International and Cherril Blair, a longstanding member of the Soroptimists who received a liver transplant in 2014, presented a cheque for £1,000 towards the work of the RVH Liver Support Group to Kay Duffy (Founder) and Donald Cairnduff (chair) on Friday 20th January.

The money was raised at a concert held on 24th October last year.

This is a terrific contribution to our work and is very gratefully received.  Our thanks go to everyone involved – and not just for the donation, but also for all that the Soroptimists do to publicise the RVH Liver Support Group in the Ballymoney area and for their consistent and passionate efforts to raise awareness of the life-enhancing benefits of organ donation.

We wish them every success in the future.

Norman Keenan fundraiser

Brenda Keenanpresents the cheque to Gordon Cave, President of the group

Brenda Keenan presents the cheque to Gordon Cave, President of the group

Gordon Cave recently received a cheque plus donations totalling £2,710  for the Liver Support Group from Brenda Keenan, widow of Norman, who suffered from liver disease and sadly passed away earlier this year. Hugo McFadden had put together a band of Bangor Musicians who played in various groups back in the 60’s and Norman was lead singer. For their first public appearance Hugo organised a Charity Event in memory of Norman and to raise money for the Liver Support Group. Many thanks to all those involved.

Gordon and Brenda with Hugo McFadden who organised the event

Gordon and Brenda with Hugo McFadden who organised the event

 

Liver Recipients in training for the World Games

Four liver recipients have been selected to represent Team GB/NI at the World Transplant Games in Malaga in June 2017.

                                               Rachel (and David)                                                           Lucia                                               Philip and Catherine

Catherine Annesley, Philip Cairnduff, Rachel Chambers and Lucia Quinney-Mee will be in serious training for their events between now and next summer, including attending three team building weekends for the whole squad in England.

Other Northern Ireland transplant recipients selected for the UK team are Marie Devine, Catherine Glover, Irene Jeffers, Orla Smyth, David Watt and Andrew Weir.

At the last World Games in Argentina in 2015 the UK team had the highest medal haul of any country but lost out to Hungary as overall winners when the agreed formula of medals to number of athletes was applied.  Good luck and best wishes to all from Northern Ireland in their preparations towards helping the  British team go one further next summer.

Members’ Meeting and Launch of Fundraising Pack

Some 55 members and friends of the RVH Liver Support Group attended a members’ meeting in the Sir Samuel Irwin Lecture Theatre on the evening of Thursday 27th October.

Donald Cairnduff (chair) spoke briefly about the work of the Group since the last meeting, highlighting continued successful outreach on the Helpdesk, at which 1,100 contacts with patients had now been recorded; continued unseen and invaluable work on one-to-one patient support by committee members with responsibility for patient care; and the publication on the website of Before and After transplant stories during Organ Donation week in September.  The week has passed but the shortage of organs hasn’t; the stories can still be found at https://rvhliversupportgroup.org/category/latest-news.  Please continue to share them.

The most intense work in recent months involving the whole committee, had been the writing and printing of a fundraising pack containing an information booklet and a series of relevant inserts.  This work had been led by Seamus Cunningham, Fundraising Co-ordinator, who explained to the audience how the pack had developed from an idea of his for formalising this aspect of our work to the highly professional publication that was on display at the meeting.  He, Sharon Millen (Vice Chair) and Donald Cairnduff had written the various sections during the summer, since when it had been rigorously checked and re-checked by all on the committee.  It was hoped that this work would yield three outcomes to the advantage of the Group: that all future fundraisers would be well informed of what we do and why we do it; that fundraising efforts would generate the maximum financial return; and that all fundraisers would stay on the right side of the law and of health and safety regulations.

The theme for the rest of the evening was Who Cares?, explored through reflections on the challenges and rewards of caring for loved ones with liver conditions. Three friends of the Group shared their experiences:  Lynn Kirk, wife of Gordon, transplanted in November 2015; Sheila Watt, mother of 15 year old Megan who has a chronic liver condition; and Maeve Curley, mother of Ted who has already received a liver transplant at the age of 3. Maeve was unable to attend because she had been called into hospital herself but had kindly sent her answers in advance, which were read by Eileen Hearst.  The sustained attention of their audience for almost an hour and the willingness of the audience to share their own experiences as carers was tribute to the clarity and the searing honesty of the speakers.

On a night of powerful and ultimately inspiring talk, perhaps the most memorable words are Megan’s, quoted by her mother Sheila: I have liver disease. Liver disease doesn’t have me.

CLDF Conference 2016

 

Committee members Donald Cairnduff, Jennifer Cairnduff and Rachel Quinney-Mee attended The Children’s Liver Disease Foundation’s Conference at Chesford Grange in Warwickshire on Saturday 24th September. Once again it was a memorable day, with the insights gained from a range of excellent presentations complemented by inspiring stories of courage told informally between sessions.

As ever the most compelling voices were the voices of the young people themselves. A young man told how he had reacted to sustained bullying for being a transplant recipient by trying too hard to be the person he thought his peers expected him to be. After a long and difficult time, football, fishing and the love and support of his family allowed him to find happiness in simply being himself. A teenage girl, asked about when you should let others know that you are a transplant recipient, advised: Wait. Slip it in naturally to conversation. You don’t want to be defined by your condition. She also had advice for parents of hospitalised children: We can sense if parents are stressed.  If you don’t look after yourself, our recovery suffers.  Another teenage girl, asked how parents should talk to transplanted children about medication and lifestyle, advised: Don’t shout. If I am told I can’t do something, I will immediately want to do it.

We are grateful to CLDF for their invitation and for making us so welcome on the day.

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Organ Donation Week – Before and After – Day 7

 Lucia Quinney-Mee

 

Lucia at her gala dinner in Tullyglass.

Lucia Qunney-Mee suffered auto-immune hepatitis as a child and received a liver transplant in Birmingham Children’s Hospital at the age of 8. A year later, chronic rejection necessitated a second transplant. For the next six years Lucia’s life veered between rich, active experience and periods when hospital became like a second home. In January 2015 sepsis from a kidney infection led to ten days in intensive care, at the end of which her liver was under so much stress that she was re-listed.

Lucia was now 16 and a transplant could not go ahead without her consent. It was a very tough decision because she knew that recovery would be much harder, physically and mentally, than before. She is grateful that her family and medical staff in Birmingham gave her time and space to think it through. She eventually signed consent forms in April and received her third liver on 9th September 2015.

In the year that followed, Lucia has achieved excellent GCSE grades, set up a social media campaign for the promotion of organ donation called Live Loudly, Donate Proudly which has reached hundreds of people, been interviewed twice on The Nolan Show, spoken about the life-enhancing impact of organ donation to politicians at Stormont, won seven gold medals in the British Transplant Games in Liverpool and been selected for the World Transplant Games in Malaga in 2017. Almost a year to the day since her transplant, Lucia’s family hosted a gala dinner in the Tullyglass Hotel in Ballymena at which she made a passionate and compelling case for registering as a donor to a packed room. Every bit as satisfying as any of these achievements are the things Lucia’s donor has given her that can’t be listed or measured – the chance, in her words, of laughter, joy, tears, excitement and every other emotion that life has to offer.

She says: It has been my goal, ever since I signed those consent forms last year, that I would get to Malaga and that I would be the fittest, strongest and happiest person I can be. My donor has given me the ability to work my ass off for that goal. I have the chance and the hope that I will get there. That is what you could give to someone. As well as so much more. Please talk to your family about yours and their wishes. Make it a positive conversation, and help those who are uncomfortable see how important it is to discuss. We can make organ donation the norm – not the exception. An ordinary conversation which leads to an extraordinary gift.

Please join the organ donor register, tell your family and friends you have done so and offer the gift of life to someone like Lucia.  It is a gift that will be cherished.

Online: organdonation.nhs.uk                    By phone 0300 123 23 23