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.