'Help motor neurone disease patients maintain their hobbies as part of care'

Healthcare professionals must remember to consider the activities and hobbies that improve the quality of life of patients with motor neurone disease.

That was the message from occupational therapist Sarah Lavender who was giving a public lecture at RCN's headquarters in London yesterday to mark motor neurone disease (MND) awareness month. Ms Lavender, who works at Wisdom Hospice in Rochester, advised health workers to include a patient's hobbies or activities they enjoy when assessing them on admission to hospital or a hospice.

‘Think about what matters most to patients,’ she said. ‘Is it getting to the coffee shop or their meal times?’ she added.

‘Patients want to be seen as individuals and not just as patients with MND,’ she says. ‘It is important to remember that hobbies are an important part to consider during the assessment.’

She said this enables support to be put in place to help patients continue with activities they enjoy and that enhance their wellbeing. For instance, for some people it is important they get to their choir rehearsals, while for another patient she supported them in preparing the Christmas meal.

‘MND is a very debilitating disease,’ she said. ‘We need to make sure as healthcare professionals that we improve every MND patient's quality of life as best we can.’

She added that assessments should also take into account patients’ physical, psychological and spiritual needs and then care environments should be adapted accordingly.

‘I conduct assessments of the person living with MND and their families throughout their care journey as their needs can change,’ she said. ‘I set realistic goals to support positive outcomes but, most importantly, I listen and give them my time.’

The lecture, organised by the RCN and the MND Association (MNDA), is the second in a series of three being held to raise awareness of the disease.

MNDA director of care (south) Karen Pearce told the audience that evidence shows good multidisciplinary care for MND can reduce the speed of progression of the condition by up to nine months.

She urged healthcare professionals, including GPs and practice nurses, to consult their recently published guidance on MND in primary care settings. The document, Motor Neurone Disease: a guide for GPs and primary care teams, explains the different types of MND, its prevalence and the symptoms.

During a question and answer session, RCN professional lead for long-term conditions and end of life care Amanda Cheesley said it is important primary care nurses get information on the best support and equipment for MND patients, adding: ‘District nurses are put in very difficult positions because they often deal with the condition that they know very little about.’