The Royal College of Nursing (RCN) Congress is the biggest and most important event of the annual nursing calendar. More than 4,000 nurses meet there to learn, share and develop nursing practice and influence health policy debates. This year’s congress, in Northern Ireland for the first time, was held at the Belfast Waterfront on 13th-16th May. Lesley, our Patient Support Manager, was joined in Belfast by Duncan Batty, AKU patient and new trustee, and his wife Cindy. They were responsible for a stand at the exhibition, raising awareness of AKU.

Except for one or two who had visited our stand last year, most nurses at the RCN Congress had never heard of AKU. Lesley, Duncan and Cindy spoke to nurses from a range of backgrounds. This included a number of students at various stages of their training. One delegate in particular (a genetic counsellor who also works for Genomics England) said something that stood out. She was amazed that a charity as small as the AKU Society was so active and engaged with patients and the public.

As in previous years, the AKU e-learning module was very popular. We created this online training module several years ago with help from the Royal College of General Practitioners. During the congress, Lesley discussed it with RCNi, a subsidiary of the RCN which offers a range of digital products. She hopes to work with them to review the module and develop it as an online resource for nurses. Since April 2016, all nurses and midwives in the UK have had to do 35 hours of continuing professional development (CPD) learning. We would like it if nurses could receive CPD credits for completing the AKU module. This would certainly help to raise awareness of AKU.

According to Duncan, exhibiting at this year’s RCN Congress was an uplifting experience. A significant number of people – from the latest batch of student nurses to the most mature matrons – were interested in AKU and in our charity. We were the only exhibitors raising awareness of a rare disease. Though some delegates knew of AKU from direct contact with a patient and others had seen the stand at previous congresses, for most it was their first encounter with the disease. ‘If you can pronounce ‘alkaptonuria’, you get a chocolate’ was Duncan’s usual ice breaker – any pronunciation was acceptable. We expect that they will be better informed in the future!

Duncan had a particularly interesting chat with a nurse who had been trained at the Aga Khan University in Pakistan. He planned to return to Pakistan soon, he told us, and wanted to know if there were any AKU patients there. Lesley gave him her contact information, and we look forward to hearing more soon.

Many delegates also appreciated actually talking to a patient.  Duncan doesn’t have any dark spots in his eyes and the discolouration in his ears is subtle. Nevertheless, he was able to give them a good impression of what life is like with AKU. He talked about the long-term pain, his joint replacements and the effect of taking a drug called nitisinone, a possible AKU treatment, for almost ten years.

Duncan said that he found the RCN Congress tiring,

“I struggle with standing up for any length of time, so I had to take many breaks. Was it worthwhile, though? Yes. Would I do it again if asked? Yes.”

Cindy, Duncan’s wife and main carer, was there to support Duncan and Lesley. She found the experience rewarding and inspiring. Because of her background in community nursing, she could have in-depth conversations with delegates about how to manage care for AKU patients. Her personal and professional insights, she told us, enhanced nurses’ understanding of AKU. In particular, she was encouraged by the interest which student nurses showed. They seemed to understand our patients’ wide-ranging care needs. Patients with complex degenerative diseases such as AKU need a holistic care approach – the body is affected in many different ways, and care should reflect this.

Cindy said,

“I’m grateful that Lesley and the AKU Society allowed me to attend an RCN Congress exhibition. I never had this opportunity when I was nursing. It was a very interesting and encouraging experience. I was able to update my knowledge of nursing and find out how the profession has advanced in the 21st century. I also learned how to become a better carer. This could help me in my role as Duncan’s carer and improve his daily life.”