MOTOR NEURONE DISEASE (MND)

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Presentation and referral

Follow RCGP red flag diagnosis tool.  If there are any red flag signs please refer to Neurology via letter.

Management

Once a patient is diagnosed via neurology the Neurologist refers to MND Specialist Nurse and onward referral is made to Respiratory, Nutrition & Dietetics, Palliative Care, and Neuropsychology.

Each patient will require individualised management as guided by the MND Specialist Nurse. (andrew.bethell@nhs.net).

MND Specialist Nurse will provide self management advice.

Further information for healthcare professionals

Every year, around 200 people in Scotland are diagnosed with Motor Neurone Disease (MND). This terminal, untreatable progressive neurological condition typically has a prognosis of 2 years from diagnosis to death and although generally the person’s cognition is preserved, they become trapped in a failing body and lose the ability to move, speak, eat or drink, and ultimately to breathe.
In order to maximise the person’s quality of life, prompt diagnosis and referral is imperative so that the person with MND and their family can access the most appropriate support and help in order to minimise suffering and distress and to allow them to plan for their end of life.

Nice Guideline (NG42) Motor neurone disease: assessment and management

MND Scotland

MND Association

Further information for patients
Editorial Information

Last reviewed: 22 August 2019

Next review: 31 August 2021

Author(s): Motor Neurone Disease Specialist Nurse

Version: 1

Approved By: TAM Subgroup of ADTC

Reviewer Name(s): Motor Neurone Disease Specialist Nurse

Document Id: TAM270