Referral criteria for motor neurone disease patients with a confirmed diagnosis (or strong suspicion) by neurology specialist. Find out how to make a motor neurone disease referral (Word 49Kb).
Recurrent chest infections
Significant daytime fatigue
Elevated respiratory rate
Abdominal inspiratory paradox
Use of accessory muscles of respiration
Reduced chest expansion
Low volume voice
Criteria for urgent referral for NIV assessment (any of the below)
FVC <50% or <80% with symptoms/signs of respiratory impairment
PaCO2 or TcCO2 >6kPa
SNIP or MIP <40cmH2O
SNIP or MIP <65 cmH2O (men), <55 cmH2O (female) with symptoms/signs of chronic respiratory failure
Criteria for referral for cough assist device assessment
Peak cough flow <240L/min with:
- * Chest infection requiring hospital admission
- * Chest infections treated at home with antibiotic therapy
Please optimise saliva management
- Urgent referrals will be vetted by the LFU consultant team and triaged to an urgent assessment with Shauna Sheridan (specialist physiotherapist) for outpatient NIV set up in two weeks and review by a consultant in clinic in 6-8 weeks. These should be marked as URGENT and reason for URGENT referral.
- Routine referrals will be vetted by the LFU consultant team and triaged to Thursday am clinic review Dr Ramsay in 6-8 weeks.
All set ups will be outpatient based unless there are difficulties in managing NIV when an inpatient review will be arranged.
Following set up of NIV a further routine review in outpatients with the consultant will be arranged for every six months with three month follow-up with Shauna Sheridan.
Patients not yet started NIV and with risk factors for respiratory decline e.g. falling FVC, SpO2 < 96% will be seen every three months.
We do offer a PEG insertion service for patients with respiratory symptoms and/or requiring NIV. If assessment is required this needs to be highlighted in the referral letter and details regarding discussion with the patient.
Please state if any discussions regarding escalation plans, advanced planning or advanced decision to refuse treatment (ADRT) have been made with the patient prior to review.
If the patient is known to palliative care services, please state who has been involved in their care. If not, please refer to your local palliative care service alongside this referral.
Outreach reviews and set up of NIV for MND patients will only be requested by the LFU team and decision made on an individual basis.
Please ensure that discussions regarding NIV are had with all patients prior to referral and agreement to treatment in principal is accepted by the patient and their family.