Motor neurone disease: a patient-centred approach

My 22 years as a physiotherapist has involved working with people with motor neurone disease (MND) in various settings and stages of the condition. This includes work in acute neurology, community settings and my current post in a clinic-based role at The Walton Centre in Liverpool. As a specialist neuroscience trust, we are fortunate to have an MND care centre developed by the Motor Neurone Disease (MND) Association.

 

This is a regional centre for the support and improved co-ordination of services for people with MND. I work as one of a multidisciplinary team (MDT) which includes a neurologist, specialist nurse, speech and language therapist, clinical psychologist, regional care development advisor, financial advisor, occupational therapist and health care assistants. I am involved in a clinic for people who have a new diagnosis of MND. 

 

We offer a patient-centred joint physiotherapy and occupational therapy assessment, have a collaborative discussion of issues raised and then formulate management strategies with the person and often their family members.  We are able to make any necessary specialist referrals for further intervention from this clinic, such as community therapies, social services, a respiratory clinic, or orthotics.

 

Despite the distress of the life-changing diagnosis, attendees to the clinic often report the benefit of discussing practical management of aspects of the condition. 

 

These might include positioning to alleviate symptoms, exercises to maintain movement range and ease pain or stiffness, or simple orthotics to improve function or help maintain a favourite activity.

 

In a previous role in a community therapy team, I enjoyed a position within a MDT where we were able to maintain involvement as required with the person with MND through the stages of the disease. 

 

The recently published NICE guidelines for MND (NG 42, Feb 2016) advocate this continuity of care and avoidance of untimely case closure.  This comprehensive document is a welcome tool for allied health professionals in assisting our provision of good practice in assessing and managing people with this extremely difficult and multi-faceted condition.

 

For more on MND see here.