A new online guide has been launched with the aim of improving knowledge and providing support to nursing staff treating patients living with motor neurone disease.
The resource covers both clinical understanding of the condition and best practice in dealing with difficult ethical issues.
“Nurses working in this area need to be resilient themselves”
It has been produced by the Royal College of Nursing in partnership with the Motor Neurone Disease Association, and with the involvement of expert nurses working in the field.
Amanda Cheesley, the RCN’s professional lead on long-term conditions and end of life care, said the guide was intended to help nurses improve their understanding and care of patients with the “complex and challenging disease”.
“The huge variety of symptoms and rates of progression can be difficult to treat, but we know from the experiences of people living with MND, their families and nurses how great a difference well-informed nursing care can make,” she said.
“People with MND and their families can experience great uncertainty and distress, this resource aims to share their experiences and those of the nurses who care for them, so that all patients can experience the best care and support,” said Ms Cheesley.
She added: “As with other carers, nurses working in this area need to be resilient themselves in order to give help and support to their patients, and this resource helps them to improve these skills.
“We would urge nurses to use this resource, whether they work regularly with patients with this condition or care for them only occasionally,” she said.
The term motor neurone disease or amyotrophic lateral sclerosis describes a group of related diseases affecting the motor nerves or neurones in the brain and spinal cord – messages gradually stop reaching the muscles, which leads to weakness and wasting.
It can affect how a patient walks, talks, eats, drinks and breathes. But not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.