Wajid’s story

Patient stories posted 2 January, 2018

Wajid Iqbal suffers from kidney disease and receives treatment at Manchester Royal Infirmary. After time spent waiting for a suitable kidney donor for a vital kidney transplant, Wajid became involved in research in finding the most effective method in raising awareness of organ donation in the south Asian community.

Wajid

For most of my adult life I have suffered from kidney disease and spent 12 years receiving dialysis at Manchester Royal Infirmary, 7 ½ years on continuous ambulatory peritoneal dialysis and five years on haemodialysis.

This meant coming into the hospital from Bury, where I live, for regular appointments. When I was on haemodialysis, the filtering of my blood could take up to five hours and had to be done several times a week. This obviously had a big impact on my work and social life.

It was only when I was placed on the waiting list for a kidney transplant that I realised the big shortage of organ donations from those of South Asian ethnicity. Which meant many people, like me had to wait a long time until a suitable organ donor was found. Because of this I became involved in supporting the promotion of organ donation in the Asian community and through this work I met Agimol, a renal research nurse from Manchester Royal Infirmary. Agimol was conducting her own research into increasing organ donation in the south Asian community through strategic intervention to educate and inform people within of the benefits of kidney donation, and encourage people to join the donor register, in addition to discussing with their families the need to be a kidney donor.

At the start of Agimol’s research 15.1% people who received a kidney transplant were from an Asian background. However, during the same period there were only 1.7% of donors that came forward from Asian community. This is an issue as donors need to be closely matched to recipients and our most successful if they are from relatives or those with the same tissue type or blood group.

Through being involved in Agmiol’s research we found that it is not negative views towards organ donation, but a lack of knowledge and misinterpretation of beliefs around the benefit organ donation can bring. It also became obvious that the Asian community are not aware of the shortage in donors, and so research into ways of educating the community is greatly received. The research has been successful in opening dialogue with various religious and community leaders and raised the profile of the importance and real need of Asians increasing needs for signing up on the organ donor register.

Taking part in this research was not about gaining anything for myself, but about delivering a wider impact for future patients in need or organ transplants.

Without research the NHS would not be able to progress. Research helps us understand more about diseases and conditions and improves the knowledge of professionals as well as patients in making informed decisions for our wellbeing and future.