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)

Every year the RVH Liver Support Group helps the Northern Ireland Transplant Association promote the Organ Donor Register at University Freshers’ Fairs.

This year was no exception.  Committee members Jennifer and Donald Cairnduff helped man the NITA stall at the University of Ulster at Jordanstown on Thursday 25^th October.  During the day a steady stream of students joined the register, some went away to consider it and others spoke openly and honestly about their reasons for not wanting to join the register.

Pictured  are several people who have just signed on to  the register – three UUJ students (l-r Amy O’Connor; Niamh McShane; Emma Fallon) and Ciara Lavery.  Ciara is keenly aware of how organ donation can be a gift of new and transformed life; her cousin Sean Lavery is recovering well from a liver transplant received earlier this year and planning major fundraising for the RVH Liver Support Group in February 2015.

Jennifer was attending her first Freshers’ Fair.  Afterwards she summed up her impressions of the day: ‘The students were very open to talking to us.  It was very encouraging to hear that many had already signed on when applying for a driving licence and discussed their wishes with their families.  It was also good to have a ready supply of ‘freebies’ to help lure students to our stand!’

A tiring but very rewarding day.                                                                                                                                              ;

Fantastic fundraiser in Roadhouse Bar in memory of Anna Sheerin

Cheque presentation. L to R Rita Carney, Vinny, Tommy Sheerin, Arlene McManus and Kay Duffy

Tommy Sheerin and his band of volunteer helpers raised the massive toatal of £3100 at a function in the Roadhose Bar on 30 August in memory of Anna Sheerin. It was very well organised and even the organisers themselves were overwhelmed by the generous response from the local community who supported them so well.

The cheque was handed over on Saturday 6 September to Kay Duffy from our group. Tommy Shherin was so complimentary of the support he received from our group and Kay in particular. The photo shows the cheque presentation.

 

Sheerin family raise funds in memory of Anna

Seamus Cunningham with, from left, Danny Sheerin, Tommy Sheerin, Louise Sheerin and Amy Green.

There was a fantastic fundraiser for our group in the Road House bar in Enniskillen on Saturday 30 August in memory of Anna Sheerin. The event was organised by the Sheerin family and their friends in the local area. It was particularly well attended and soon there will be a presentation of the proceeds featured on this site. I had the pleasure of calling with the group before proceedings really got going and spoke to family members and Arlene McManus who was one of the dynamic and enthusiastic organisers.

Transplant GAMES 2014

The  British Transplant Games in Bolton from 7^th -10^th August brought plenty of  success for  liver recipients from Northern Ireland.

Lucia Quinney-Mee’s swimming medals contributed significantly to Birmingham Children’s Hospital winning the children’s team trophy

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The Belfast Team won the adult team trophy with the help of Catherine Annesley, Seamus Cunningham, Wendy Howe and Sharon  Millen.

Philip Cairnduff represented King’s College Hospital and chipped in with 3 medals towards their fine total of 45. While all competed keenly, they contributed to the event in far more important ways than simply by winning medals.  Talking to other transplant recipients, donor families, charity representatives and medical professionals gave a sense of perspective on their own experience of illness and sometimes bumpy recovery.  And by competing at all, they and hundreds of others from under 5’s to over 70’s showed the people of Bolton, as well as T.V. and radio audiences nationwide, the amazing way in which  transplants transform lives.

Most years see the numbers on the Organ Donor Register where the games take place increase dramatically.  Let’s hope for the biggest increase yet amongst the people of Bolton and Greater Manchester.

Just over a year after The Children’s Liver Disease Foundation made their first visit to Belfast, they are on their way back.

Last September a record number of children and family members went 10-pin bowling at the Odyssey Arena.  This year CLDF have booked Streetwise Circus to present a programme of circus skills.  It should be a very lively and entertaining few hours for everyone who comes along.

This all takes place on Saturday 1^st November – from 11. 30 a.m. to 2. 30 p.m. – at the Morton Community Centre in Belfast  (off the Lisburn Road)

As last year, CLDF staff will be available to chat to parents and children about how they are coping.

RVH LSG are delighted to be helping with the preparation and delivery of the event.  More details will be posted as the weeks go by.

In the meantime – if a child in your family has been in any way affected by liver disease, please put the date in your diary.

Final figures from Love Your Liver roadshow on May 20th:

Dr McDougal explains the Fibroscanner to Minister Poots

 

• Screened (using online health check on laptops): 112 people
• Scanned by FibroScan: 60 people
• Referred for LFTs or further action: 37 people (33%)

Thanks again to everyone who helped set up this very successful health promotion day!

The 2K Family Walk

Every year Gareth Hunter’s in-laws, the Walsh family, do a sponsored walk for charity.

A well- earned rest after 14 miles in the mountains

 This year they were joined by Gareth’s father and sister.  A total of 25 brave souls walked for 4 hours, approx 14 miles, in the Cooley Mountains.  At 77 years of age, Gareth’s father Bob led from the front for most of the way – until he took a wrong turn, and found himself 2 miles off route ! 

£ 2,000 was raised for the work of the RVH Liver Support Group. 

The cheque was handed over on the morning of 20^th May, at the Love Your Liver Campaign in Castlecourt, to LSG chair Donald Cairnduff. 

Huge thanks go to everyone involved for the strenuous fundraising and the strenuous hiking that went into gathering this magnificent total.

The photo on the left shows the cheque handover. From left is Bob, Gareth and Donald receiving the cheque on behalf of the RVH Liver Support Group.

Joyce Britt presents her cheque to the treasurer Tom McCready

Michael and Joyce Britt have been long standing supporters of our group and the picture on the left shows our treasurer Tom McCready reciving a cheque from Joyce at the AGM

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