The MND research nursing team looked at the experiences, well-being and role alignment of nurses and healthcare professionals who support people with motor neuron disease (MND) across the UK. The census explored how well their roles matched their skills, how satisfied they are in their jobs, and how closely they follow national care guidelines such as NICE and Scottish competencies.
Using a mix of questions and feedback, the census gathered responses from 64 professionals. Many said they found their roles rewarding and that they enjoy their work. Participants value being part of a multidisciplinary team, even though they often face challenges of isolation, having too many patients, and limited funding. Notably, 26% of those professionals taking part in the census showed signs of moderate to high burnout - feeling emotionally and physically drained by their work.
The report suggests creating a national training programme or a Masters-level course focused on MND care. It also calls for more research into how to support the workforce and reduce burnout.
Next steps
As a next step, the Anne Rowling MND research nursing team is developing educational resources to help the wider community better understand and support people living with motor neuron disease.
Further reading
Read the open access peer reviewed publication: An Evaluation of the United Kingdom Motor Neuron Disease Nurses and Allied Health Professionals (UK MND NAHP) Workforce: A Census (PLOS One Journal - an external website)
Relevant links
Meet the census publication authors:
Find out about MND research at the Anne Rowling Clinic on our Find a research project page (filterable by condition).
Acknowledgements
The Anne Rowling Clinic MND research nursing team would like to thank the MND NAHP Consortium who have contributed to this report.