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

 Life saving family chat

Tell Your Loved Ones – this Thursday

Thursday 11^th December is Tell Your Loved One Day.  This day-long campaign has the backing of the First and Deputy First Ministers and simply involves as many people as possible across Northern Ireland sitting down and discussing openly with their families whether or not they wish to be organ donors.

84% of people in Northern Ireland support the idea of organ donation yet the latest statistics reveal that 38% of families refuse to give consent to the donation of their loved one’s organs when faced with this choice.

And without family consent donation will not happen, regardless of whether the deceased was on the register or not.

The most common reason for families withholding consent is because they had never been told that their loved one wished to be a donor.  If donation rates are to increase, talk about an individual’s willingness to donate must be more widespread and more open.

Please support Tell Your Loved One Day in your own homes.  And please encourage friends and wider family to have the same talk at some stage of the day.  Currently 15 people per year from Northern Ireland die on the waiting list.  Open dialogue will lead to more awareness of the life saving power of donation – one deceased person can save many lives – and greater awareness will lead to fewer people dying.

This Thursday:

• sit down,
• speak up,
• share your decisions,
• save lives.

RAISING AWARENESS OF LIVER TRANSPLANTATION – at the heart of Government

The All Party Group on Organ Donation at Stormont is a small body of  MLAs meeing roughly four times a year so that they can stay informed on all aspects of organ donation as it affects people in  Northern Ireland.

It is chaired by Mrs. Jo-Anne Dobson (MLA UUP).  Mrs. Dobson has a keen personal interest in the issue as her son is a kidney recipient.  She is currently drafting a Private Members’ Bill to change the law in Northern Ireland to a ‘soft’ opt-out system.

When the Group met on Monday 24th November, the focus was on liver donation.   Presentations were made by myself, as chair of the RVH Liver Support Group, by consultant Dr. Neil McDougall and by Gareth Hunter – three times a liver recipient within 6 weeks last summer.

I spoke of my experience  as a carer for over 10 years, of the contact the charity has with patients who have to travel to England for surgery and with their loved ones and of the overwhelming support for an opt-out system from our survey of members in 2011.

Dr. McDougall outlined the work done in the RVH to prepare patients for transplant surgery and to aid their recovery.  He spoke of roughly 18 transplants per year for Northern Ireland patients and cited 230 recipients currently alive and well.  Outcomes were very encouraging, with one the one year survival rate standing at 91% and the five year rate standing at 80%.  Northern Ireland was also one of the top regions in the U.K. for liver donations; we probably gave more than we received.  The challenges were growing demand, a lack of suitable organs and how to cope with clinics getting very full as a result of increasingly successful referrals.

Gareth then talked about his long struggle with PSC that culminated in 2 unsuccessful transplants and one finally successful transplant in the summer of 2014.  His story was accompanied by slides, ranging from a picture of him playing golf as a 7 year old to one of him breaking his post-transplant fast with a well-earned yoghurt.  It was told with humour, as when he deplored how the timing of his surgery had prevented him watching the Open Golf Championship at Hoylake; with searing honesty, as when he outlined the impact on his life of encephalopathy; and never at any stage with even a shred of self-pity – in fact he stressed that some people he met in King’s had endured a far rougher time than he had.  The end of his presentation was received with a sincere and spontaneous round of applause.

It was a very worthwhile and satisfying morning.  Thanks to Mrs. Dobson for choosing liver donation as the theme for this meeting and for allowing the three of us to speak.

Donald Cairnduff

Gareth Hunter and Donald Cairnduff withJoanne Dobson MLA and Dr Neil McDougall

Seated (l-r): Donald Cairnduff; Dr. Neil McDougall; Gareth Hunter
Standing (l-r): Tom Elliott (UUP); Pat Ramsey (SDLP); Jo-Anne Dobson (UUP); Sammy Douglas (DUP); Bernadette Maginnis (British Medical Association NI); Jayne Murray (British Heart Foundation NI); John Brown (NI Kidney Research)