Leadership programme project has enhanced learning to support children with epilepsy

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From June 2022 to February 2023, 17 Roald Dahl Nurses took part in a Florence Nightingale  Foundation (FNF) Leadership Programme. In this blog we hear from one nurse, Jo Campbell, who shares her experience of the programme and impact of her project: Paediatric epilepsy awareness and emergency medication training during and following the COVID 19 pandemic.

Roald Dahl Nurses provide specialist support and care all around the UK for seriously ill children, young people and families living with lifelong, complex conditions, including epilepsy, rare diseases, Sickle Cell Anaemia, and neuro-muscular conditions. Roald Dahl’s Marvellous Children’s Charity supports their nurses to be the best they can be – and this leadership programme was one such way to achieve this.

As part of the programme, all the nurses completed quality improvement projects focused on demonstrating the value and impact of the nursing role and the service they provide to the children and families in their care.

Jo is a Roald Dahl Epilepsy Nurse Specialist. She works at the Royal Aberdeen Children’s Hospital in Scotland and is Joint Clinical Lead of NeSCANN (North of Scotland Child and Adolescent Neurology Network). Jo is the first point of contact for families following their child’s diagnosis with epilepsy.

Jo says, “Overall, I found the programme to be a voyage of self-discovery. Since I was a child, I had difficulty speaking to those in authority. So, the programme helped me to learn more about self, presentation, authority, and leadership. I’ve never felt more comfortable in my skin – exploring who I am as a leader and listening to the critical appraisal from my peers.

I always look to make anything I do academically relevant to my practice – to deliver more effective care, and so the project element of the programme really appealed to me. Face to face Paediatric Epilepsy Awareness and Emergency Medication training is critical for all health, education, and social care staff – but the pandemic put a stop to face to face delivery. However, it also meant better access to technology and increased access to virtual training, and I worked with colleagues on the development of an online learning module which would be accessible country-wide. It was quite a learning curve! Luckily, I had a great team.” 

Five quality improvement PDSA (Plan, Do, Study, Act) cycles were used to develop a standardised paediatric Epilepsy Awareness and Emergency Medication training module on a digital platform.

The module was launched via the SPEN (Scottish Paediatric Epilepsy Network) NeSCANN and NES (National Education for Scotland) and using social media and is now hosted on our national education platform and over 1000 people have accessed it so far.

  • 87.5% of learners rated the module highly
  • 95% of learners said they would recommend the module to others
  • Content, structure and delivery of the module was rated highly (93-99%)
  • In last 6 months, 74% of learners passed, 1% failed and 25% are still in progress
  • Learners participated from across Scotland and from all the anticipated agencies

The module has enhanced access to learning for all those involved in supporting children with epilepsy, thereby standardising knowledge, and skills. It has also reduced the carbon footprint of training and released nursing time back into direct patient care, especially for more complex support needs.

Next steps are to continue to promote the e-learning module and to present the learning at regional and national meetings, as well as seeking to publish the findings. I will also be exploring barriers to using the e-learning module, as well as offering the training in England as well.

“This project has given me an awareness of self and empowered me to demonstrate inspirational leadership. I would say that the programme has served as a catalyst to make improvements to service provision and improve accessibility of training. The programme has given me a voice and the skills to lead effectively, with confidence, enthusiasm and passion. Thank you.”

Michelle Kukielka, Associate Director of Programmes at Roald Dahl’s Marvellous Children’s Charity says, “Roald Dahl Nurses are experts in their field and a vital lifeline for seriously ill children and their families. We are delighted to be in partnership with the Florence Nightingale Foundation and proud of all our Roald Dahl Nurses who take the time out to improve the crucial work they do, and I know that they will use new skills and knowledge to innovate, problem-solve, and inspire; to further improve the lives of the children and families in their care”.