Key actions for GPs
Motor neurone disease (MND) is a progressive and ultimately fatal disease that results in degeneration of the motor neurones, or nerves, in the brain and spinal cord.
GPs and others in the primary care team can make a great difference to the quality of life of people with MND, with timely care, support and symptom management.
Responsibilities of the GP when a patient has suspected/confirmed MND:
Use the Red Flag tool to recognise early signs of MND in order to refer to neurology in a timely manner.
- Use a person-centred approach to listen to and ascertain the physical, social, emotional and spiritual needs of the person with MND and their carers at each appointment.
- Refer to appropriate specialist teams as necessary.
Monitor and assess symptoms, including signs of:
- Respiratory involvement – early signs should trigger referral to the specialist respiratory team.
- Cognitive change – this has implications for decision making and future management.
In collaboration with consultants in neurology and palliative care, initiate appropriate management and treatment, including anticipatory symptomatic intervention.
- Provide support and information before diagnosis and throughout the course of the disease.
- Advise on the need to inform the DVLA or DVA of MND diagnosis.
- Complete a DS1500 form to support a benefit application.
- Issue repeat prescriptions if the person with MND is prescribed riluzole by their neurologist: a shared-care protocol should be agreed.
If no: Use the appropriate coding so your system flags when the person contacts the surgery and the appropriate response can be given.
If no: Put the patient’s name on the Supportive Care Register within your practice.
If no: Identify a named person who:
(a) acts as the single point of contact within the PHCT and
(b) can liaise with all health and social care professionals involved in the person’s care.
If no: Look at options for management. If symptoms are still uncontrolled, refer onwards.
If no: Notify your out-of-hours service provider and ensure access is given to all relevant facts/wishes.
Are plans in place for emergency care provision if the person’s carer cannot support for any reason?
If no: An assessment of care needs should consider this. Refer to social services.
Do you have a copy of any existing DNACPR order/ADRT/advance care plan/preferred place of care request in your practice records?
If no: Ask to keep a copy in your patient records.
If no: Notify the ambulance service so it can be flagged on its system to prevent inappropriate care or treatment.
If no: Record the name of the main carer and their contact details on your practice system.
If no: Put a flag on the carer’s record so you are aware of any potential impact on the carer’s health.
If no: Use active listening skills to clarify these as the opportunity presents.
If no: Encourage the patient to record their wishes and make other members of their family and the PHCT aware.