NIKPA Newsletter

Northern Ireland Kidney Patients’ Association March 2011 The young renal patients visit the Pantomime On Saturday the 15th January, NIKPA in conjunction with the Royal Belfast Hospital for Sick Children (RBHSC) arranged a day out to the pantomime for young renal patients and their families. Members of the NIKPA committee along with Hazel Gibson (lead nurse at the RBHSC renal unit) greeted 120 children and family members at the Circle Bar in the modern part of the opera house. Each child received a goody bag of yummy things to eat and drink (approved by Hazel) and a £1,000 cheque was presented to the Children’s Re- nal Fund by Joanne Dobson (on behalf of NIKPA) and her son Mark, who is a young transplant patient.

The Grand Opera House, Belfast was the venue for the pantomime- ‘Snow White and the Seven Dwarfs’. The main stars of the show were May McFettridge who played a very whacky Nurse and Leslie Joseph who played the evil Queen and stepmother. The show was ‘packed with laughs, magic, beautiful costumes and stunning sets’, we hope that everyone who attended enjoyed this col- ourful and musical day out.

______NIKPA Newsletter Page 1 ~ RODNEY CURRY ~

On the 16th November, 2010, Rodney Curry passed away. Rodney was one of the founder members of NIKPA and a long term dialysis patient. Below is a trib- ute, written by Michael Logue, another co-founder and long term friend.

When NIKPA was established what now seems like an eternity ago, its beginnings were based, not on any intricate Strategic Plan, but more on a wing and a prayer! As we dialysed in the Victorian setting of the old renal ward at the back of the City Hospital, we intended merely to act as a voice for those patients who had concerns around mundane issues such as the freshness of sandwiches on offer during the sessions and the prompt arrival of taxis to leave us home when the needling and cleansing was over for the night! Major matters such as renal reviews and the refurbishment of Level 11-whilst later of fundamental importance to the develop- ment of a modern and effective nephrology service - did not take precedence over those day-to-day items which impacted upon the quality of immediate care on offer to the renal patient and their fami- lies at the point of service delivery. With due regard to those other people who were there at the founding of the Association, Rodney Curry was the individual who insisted that the patient should always be at the centre of plans for the future development of nephrology services. Whilst he showed a very high level of business acumen and creativity in his promotion of holiday initiatives for members down the years , he was always at his strongest and most effective when he was re- solving the personal concerns raised by patients, on a one-to-one level, on his frequent visits to them in the renal unit or at their wards. Indeed, as the prime organiser of the Association Holiday Programme, where he was fully assisted by his devoted wife, Isabell, his contribution is legendary. As a past Chairman of NIKPA, I was moved to read many letters of thanks sent to Rodney and Isa- bell from those patients who, because of their efforts in the area of the holiday provision, were able to escape briefly from the rigours and captivity of dialysis, to the freedom of Newcastle or Portrush. As our Treasurer for many years, he was also a pillar of financial prudence as he guided us through the difficult waters of financial rectitude

When I attended Rodney’s Funeral Service on Friday 19 November 2010, I learnt that his highly sig- nificant contribution to the Northern Ireland Kidney Patients’ Association was but one element of this man’s unselfish giving of himself to those people whom he met in life. As he carried his own personal health cross, he willingly reached out to help others to bear theirs. Indeed, his very exis- tence was based upon the premise that living was essentially about being of service to others. I offer my condolences to Isabell and her family. They have lost a husband, a father, and a grandfa- ther.. Renal patients and all others in need have lost a dear friend. May his gentle soul rest in peace.

Michael Logue.

______NIKPA Newsletter Page 2 NIKPA Annual General Meeting, 27th March 2011

NIKPA’s annual general meeting will take place in the Ennis Room on the dining floor of the Belfast City Hospital tower on the Sunday 27th March at Belfast City Hospital. It will begin at 2.15pm and finish at 4pm. Refreshments will be provided. All are welcome.

NIKPA Donations

NIKPA would like to thank the family of the late Rodney Curry, Carrickfergus. £585 was donated by mourners in lieu of flowers. NIKPA would also like to thank John Knox and his family and John McCaulay for raising the tremendous sum of £1200.00 from their Threshing Fayre, Ballymoney, held in October 2010. It was a terrific occasion and re- flected all the hard work the Knox family put in organising the event.

Other donations received since 01/09/2010 by cheque/cash totalled £762.76 (Including 500 Euro received from Bank of Scotland (Ireland) to supplement monies raised by P. McIlroy, £115.12 (net) from on-line paypal donations and six other private/personal donations from individuals).

We also received the cheque for £12,000 from the Goodman Foundation which was the balance of monies kindly donated as a result of the Anglo Beef Processors Ltd Barbecue, held in Banbridge on 30th July, 2010. NIKPA wishes to offer it’s sincere thanks to all those who donated.

If you wish to make a donation to NIKPA funds, please send a cheque made payable to NIKPA and address it to: P.O Box 85, Carrickfergus, Co. Antrim, BT38 0AT or donate online at www.NIKPA.org.

Cheque presentation to to NIKPA (represented by Joanne Dobson and her son Mark) by Philip Simpson of Associated Beef Processors Ltd. All funds raised at their annual BBQ, Summer 2010

______NIKPA Newsletter Page 3 The British Transplant Games comes to Northern Ireland This summer Belfast will be the host city for the 2011 British Transplant Games. This event will be held from the 4th- 7th of August 2011 and will welcome transplant athletes from around the U.K.

The Transplant Games is a unique sports event, the aim of which is to demonstrate through sport the success of transplant surgery and to create greater public aware- ness about organ donation.

______NIKPA Newsletter Page 7 Belfast City Marathon

Transplant Sport UK is one of two nomi- nated charities for this year’s Belfast Mara- thon. This is the same charity that will be funding the British Transplant Games in Belfast this summer.

If you would like to take part visit the web- site www.belfastcitymarath on.com for details.

______NIKPA Newsletter Page 5 The ‘New Life Donor Garden’

On Friday the 21st of January the first sod was cut for the creation of a garden for the recognition of organ donors and their families for their wonderful decision to give the ‘Gift of Life’. The ‘New Life Donor Garden’ is being created at Kil- tonga, Newtownards by a partnership of the Northern Ireland Transplant Forum (NITF) and Ards District Council. The cutting of the sod ceremony was attended by Jim Shannon MP for Strangford, David McNarry MLA for Strangford, Coun- cillor Eamon Boyle SDLP, David Smyth Mayor of Newtownards, Leading Representatives of the NI Transplant Forum and Avril Waller, the mother of Lindsey who donated Lindseys Organs when Lindsey tragically died aged 17 years old.

For the last few years William Johnston (who is a dialysis patient and has been waiting for a kidney transplant for over 12 years) and Geraldine McCandless (also a dialysis patient) have been pursuing their vision of a donor garden which would recognize the sacrifices and bravery of the donors and donor families. The garden will be a place of beauty, vibrant, full of life but also peaceful. After a meeting with Jim Shannon MP for Strangford and Ards District Council, a piece of land has been secured at which the garden will be created.

The name ‘New Life’ was adopted as organ donation gives new life and Ards District Council would also like to use the garden as a background for wedding photos as marriage is also the start of a new life together. The objective of the garden is to change the attitude of organ donation as being a taboo subject associated with death.

Rather that the garden will emphasize the positive side of organ donation in that it transforms the lives of the chronically ill and should be celebrated and not feared.

The garden is being developed by Ards district council with maximum input from the NITF and donor families.

The NITF consists of representatives from all Northern Ireland Charities with an interest in increasing organ donation. These include: NIKPA –NORTHERN IRELAND KIDNEY PATIENTS’ ASSOCIATION NIKRF – NORTHERN IRELAND KIDNEY RESEARCH FUND NITA – NORTHERN IRELAND TRANSPLANT ASSOCIATION RVH LSG – ROYAL VICTORIA HOSPITAL LIVER SUPPORT GROUP TS NI – TRANSPLANT SPORT NORTHERN IRELAND

It is hoped that the garden will be in full bloom, in time for the British Transplant Games to be held in Belfast this sum- mer, 2011. The British Transplant Games is a sporting event in which over 700 transplant recipients from all around the UK, of all ages, gather to compete in many sports and demonstrate the wonderful benefits of Organ Donation. It is hoped that many of these competitors and their families will visit the garden to remember and give thanks to their donor who made it possible for them to compete in the games.

The garden is an exciting project and I believe the general public would be interested in following the journey of the gar- den from a barren piece of land to a beautiful vibrant ‘New Life Garden’.

For further details please contact William Johnston telephone 02891 271312, e-mail [email protected]

______NIKPA Newsletter Page 6 NIKPA welcomes new local renal support group

We would like to take this opportunity to welcome the Altnagelvin Renal Support Group (ARSG) to NIKPA. The A.R.S.G. was officially formed on 24th October 2010 and they have already had a number of fund raising events which proved very successful. They are planning a number of activities for next year which they hope will raise awareness of renal failure, disease and treatment through the North West. They have started producing their own Newsletter (see below) and we also include photos taken of their first Christmas party.

The following photos and comments are from the Altnagelvin Group newsletter :-

Many thanks to the Renal Unit for a great night out on 2 Dec at the White Horse Inn. In spite of the severe cold there was a great turn out and everyone had a fantastic time. There was a very lively crowd indeed and it didn’t take long for the band to fill the dance floor and have everyone dancingthe night away. A free raffle was held with prizes donated by the Altnagelvin Renal Support Group but the highlight of the night was the performance by the Calgach singers, which turned a great night into a very special one. Thanks again to the Renal Unit Manager and her staff for organizing a great night and to Liam Barr for arranging a beautiful recital by the Calgach singers.

______NIKPA Newsletter Page 4 Transplant Information Event

Renal patients and their families were in- vited to attend the Transplant Information Event at the Ramada Hotel, Belfast on Sun- day the 17th October 2010. The aim of the event was to encourage renal patients to consider how they might improve their level of fitness and general health. Information stands were available for patients and fami- lies to consult; they covered general health education, transplantation education, com- plimentary therapies, patient support groups and renal patient guidance. There was also a question and answer session with a panel of renal experts which included a transplant surgeon, a consultant, a renal coordinator, a live donor and a recipient patient. We, the Northern Ireland Kidney Patients’ Association (NIKPA) were represented there, as a patient support group. The event was organized by the renal education coor- dinators and was well attended.

Catherine Logue, NIKPA

World Kidney Day Just Around the Corner!

On March 10th, World Kidney Day will be celebrated around the globe, in over 100 countries. Marches, concerts, educative sessions, free kidney screenings and fundraising events will intend to raise awareness of the silent pandemic that affects the developed like the develop- ing world at an alarming pace.

Kidney diseases affect around 600 million people worldwide – approximately one in ten people. Kidney diseases are si- lent killers. The patients may have no symptoms until they reach kidney failure. It is then too late for treatment and the only way to stay alive is lifetime dialysis - or transplantation, for the lucky few who manage to find a donor. Sadly, dialysis is often not an option in the developing world, where it is too expensive, water is scarce or machines are unavailable.

This year, World Kidney Day focuses on Diabetes, which is the leading cause of kidney diseases worldwide. Hypertension, obe- sity and pollution are also major causes of kidney damage. While it is commonly known that lifestyle changes of the past decades have lead to an increase in diabetes and cardiovascular diseases, too many people still ignore that the conditions have generated this outburst of kidney disorders.

World Kidney Day is also a good opportunity to remind govern- ments that the pandemic weighs heavily on all countries’ health- care budgets and that it is crucial to take action to facilitate early detection and encourage healthy lifestyles.

This is a press release courtesy of www.worldkidneyday.org.

______NIKPA Newsletter Page 8