NORTHERN IRELAND KIDNEY PATIENTS’ASSOCIATION

 

PATRON : EAMONN HOLMES

President : Prof A P Maxwell MD PhD FRCP 

Vice President : Dr A E Courtney MPhil FRCP

Hon. Life President : Dr C C  Doherty MD FRCP FRCPI

Chairperson : William Johnston (Transplant Recipient)

Vive Chair : Therese Smyth ( Mother of Transplant Recipient)

Secretary : Catherine Logue ( Daughter of Transplant Recipient)

Treasurer : Nathan Fairbairn ( Transplant Recipient)

 

WHO ARE NIKPA and WHAT WE DO?

 

THE NORTHERN IRELAND KIDNEY PATIENTS’ ASSOCIATION

The Northern Ireland Kidney Patients’ Association (NIKPA) provides SUPPORT, PROMOTION and a VOICE for kidney dialysis patients and kidney transplanted patients and their families

It is run by dialysis patients and kidney transplanted patients, their families and friends and is entirely voluntary with all funds raised staying in Northern Ireland to benefit the Renal Patients of Northern Ireland. Please visit our website and meet THE TEAM at which you can read all about NIKPA Committee members and why they are involved with NIKPA. We very much welcome any new additions to our Committee which provides an opportunity to support fellow dialysis and transplant patients and their families. We currently meet the 1st Saturday of every month (except January, July, August) at 10am in the Seminar Room, Dialysis Unit, Belfast City Hospital.

We currently have over 500 members from around Northern Ireland covering the 7 dialysis units of Northern Ireland – Antrim Renal Unit, Altnagelvin (Derry) Renal Unit, Belfast City Hospital Renal Unit, Ulster Hospital (Dundonald) Renal Unit, Daisy Hill Hospital (Newry) Renal Unit, Tyrone County Hospital (Omagh) Renal Unit and the Royal Belfast Hospital for Sick Children Renal Unit.

Membership include dialysis, transplant patients, families and carers, donor families, live kidney donors, altruistic kidney donors and renal medical staff (doctors, nurses, renal surgeons).

 

 

 

 

SUPPORT

ANNUAL EVENTS FOR RENAL PATIENTS AND FAMILIES

A)     NIKPAs BIG DAY OUT – Over 200 renal patients and families from the 6 dialysis units of NI are treated to a day out in Portrush at which all transport and a 5 course carvery meal at the Royal Court Hotel are paid for by  NIKPA. 

 

B)      ANNUAL CHILDREN XMAS PANTOMINE EVENT – Children from the Royal Belfast Hospital for Sick Children who are on dialysis or been transplanted along with their siblings and families are treated to the Xmas Pantomine at the Waterfront, Belfast. Normally there is about 130 people attending and the children say it’s the highlight of their year

 

C)      XMAS DONATIONS TO DIALYSIS UNITS – NIKPA presents cheques to the 6 dialysis units of NI which are used to organise Xmas parties for the dialysis patients

This year we were able to provide funds to provide M& S vouchers for a Xmas ballot for APD and Home haemo patients

EMERGENCY WELFARE PATIENT DONATIONS -  NIKPA can provide small donations to patients ( by referral from transplant consultant) to assist in travel, accommodation or unexpected overheads

INDIVIDUAL PATIENT “AWAY DAY” SPECIALS – Referral by Consultants who believe a special day would assist a patient in recovery

PROVISION OF MEDICAL EQUIPMENT – NIKPA can assist in the provision of small medical items which will benefit Renal Patients eg  24 Hour Blood Pressure Monitoring equipment

PATIENT EDUCATION and INFORMATION EVENTS – Renal Patient Information Nights, Renal Diet Roadshows, Organ Donation Promotion

PATIENT SOCIAL EVENTS – Quiz nights

QUARTERLY NEWLETTERS – NIKPA produces quarterly Newsletters (via Paper hardcopy and website) which informs members of events and topical Renal related news and information

 

PAST EVENTS TO PROMOTE/FUNDRAISE FOR NIKPA AND THE PROMOTION OF ORGAN DONATION

NIKPA members either organise or participate in events to promote and fundraise for NIKPA and to promote Organ Donation – THE GIFT OF LIFE

A)     NIKPA LIFECYCLE – A sponsored cycle ride around the 6 dialysis units of NI

B)      Participating and/or Organising GOAL (GIFT OF A LIFETIME)  Organ Donation promotion events such as 9 HOUR CINEMA CHALLENGE, ABSEILING DOWN THE EUROPA HOTEL  dressed as Superheroes, Playing 1 Hole of Golf at 9 different Golf Clubs in the 9 Counties of NI in 1 day,  HARRINGTON INTERNATIONAL GOLF TOURNAMENT, Sailing a GALWAY HOOKER boat, Organising the G.O.A.L (GIFT OF A LIFETIME) FOOTBALL TOURNAMENT

C)      Participating in LAP THE LOUGH – 90 mile cycle around Lough Neagh in 1 day

D)     Participating in BELFAST MARATHON, Team Relay and 9 Mile Walk

E)      Participating in the BRITISH TRANSPLANT GAMES and representing GB and NI at the EUROPEAN TRANSPLANT AND DIALYSIS GAMES and WORLD GAMES

F)      The creation of a GARDEN at the HILLSBOROUGH GARDEN FESTIVAL to promote Organ Donation

G)     The creation and development of the NEW LIFE ORGAN DONATION GARDEN at Kiltonga Newtownards at which Donor Families can Remember Loved ones, Transplant recipients give Thanks to their Donor and Donor Family and those waiting for a transplant can gain hope

 

RECOGNITION OF LIVE KIDNEY DONORS/ALTRUISTIC KIDNEY DONORS

NIKPA decided it had to recognise the courage and compassion of Live Kidney Donors especially Altruistic Live Kidney Donors.

A special Golden Version of the NIKPA NEW LIFE BUTTERFLY BADGE complete with presentation box and thank you card are presented to the Live Kidney Donors two weeks after their transplant to mark the date they gave the GIFT OF LIFE to a Loved One or a complete stranger 

 

RESEARCH

NIKPA has assisted Dr Helen Noble and Dr Joanne Reid of Queens University, Belfast in following project

RENAL CALCHEXIA WORKSHOP – Research into defining characteristics and inclusion criteria

GAIN – Exploring Renal deaths in Northern Ireland and views of carers

ADVANCED CARE PROGRAMME -  For patients who decide to no longer have dialysis

 

 

VOICE

NIKPA is represented on the following National and Local Committees

A)     British Kidney Patients Association Advisory Committee

B)      NI Organ Donation and Transplantation Committee

C)      Stormont All Party Group Organ Donation Committee

D)     DONATE NI Organ Donation Committee

E)      NI Transplant Forum

 

At NIKPA we believe the motto “DIALYSIS TO LIVE, DO NOT LIVE TO DIALYSIS

We believe you can still have a fulfilling life on dialysis or while waiting for a transplant

Please follow NIKPA on FACEBOOK, LIKE the page and you will be instantly updated with any NIKPA information and developments.