Motor Neurone Disease (MND) (Guidelines)

Warning

Audience

  • All NHSH
  • Primary & Secondary care
  • Adults & Children

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.scot).

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.

Editorial Information

Last reviewed: 22/08/2024

Next review date: 30/08/2027

Author(s): Neurology Department.

Version: 2

Approved By: TAM Subgroup of ADTC

Reviewer name(s): Andrew Bethell, MND Advanced Clinical Nurse Specialist.

Document Id: TAM270