Five years ago, we partnered with the Royal College of GPs (RCGP) to develop an online eLearning module all about AKU. The aim of this module is to increase awareness of AKU among health professionals, especially GPs, and ultimately to improve diagnosis.

This was set up so that anyone could access the module to learn more about AKU; you didn’t need to be a GP nor a member of the RCGP.  The module offers free access to ensure it is open to any health professional or layperson who wants to find out about the condition. GPs can earn Continuing Professional Development Points (CPD) for completing the module and while nurses can put it towards their continued professional development as part of their revalidation, the module isn’t accredited by the Royal College of Nursing (RCN).

Accreditation is the RCN seal of approval and a mark of quality for health care training. All their accredited programmes are subjected to a rigorous quality assessment process to ensure the learning and development initiatives meet the RCN’s standards of excellence. For nurses, an accredited course guarantees that the content will promote best practice and lead to improved patient care.

The AKU Society has attended RCN Congress for the past four years. This is the biggest nursing event of the year and an invaluable opportunity to raise awareness of AKU among nurses. We have always promoted the RCGP learning module at the event. Nurses attending our stand have been keen to find out more about the module even though they haven’t been able to obtain CPD points for completing it.

In April 2016 the Nursing and Midwifery Council (NMC) implemented revalidation, the process that all nurses and midwives in the UK need to follow to maintain their registration with the NMC.  Taking this on board alongside comments from nurses attending our stand at Congress, we realised it was time to start developing a module that met their needs. We wanted a module that introduced nurses to AKU and explained how to recognise it as well as raising awareness of the condition.

Lesley, our Patient Support Manager, first spoke to RCNi about an AKU module for nurses when she attended Congress in Belfast in May 2018. Discussions on how to move forward with the idea, costs and possible funding for the module then started in earnest. Lesley and two of the research nurses at the Royal Hospital Liverpool, Emily Luangrath and Helen Bygott, started work on developing the module during the summer of 2018. The initial idea to launch the module on 28th February 2019 Rare Disease Day didn’t go to plan, and they soon realised how much time and effort was required to develop such a module.

With Lesley based in Cambridge and Emily and Helen in Liverpool the only real opportunity to get together and discuss the module was during the monthly National AKU Centre week. The team at the RCNi were incredibly patient and supportive and we couldn’t have completed the module without them. They edited and restructured it to fit with their module framework. Once completed a final draft was sent to two external referees for double-blind peer review. These reviews took a few weeks and after some tweaks, the module was finally ready to review on a test platform.

On 14th November 2019, Lesley received the news that our AKU module had been accredited by the RCN. This was amazing news and a huge achievement for everyone involved. After nearly 18 months since we started the process, the RCNi eLearning module for nurses finally launched on 25th November 2019, Garrod Day. We will be attending RCN Congress again in June 2020 and are excited to be able to promote the module to all nurses attending the event in Liverpool.

It has been a long journey to complete and see the module come to fruition. However, if other rare disease charities were considering going down the same route, we would recommend working with the RCNI, although never underestimate the amount of work and time it takes to reach the endpoint.