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:
Prompt referral for diagnosis
- 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.
Support and information
- 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.
Repeat prescriptions for riluzole
- Issue repeat prescriptions if the person with MND is prescribed riluzole by their neurologist: a shared-care protocol should be agreed.
- Include the person with MND on local palliative care registers/lists/co-ordination systems, where these exist – eg the Gold Standards Framework, Electronic Palliative Care Co-ordination Systems (EPaCCS).
Advance care planning
- Help the person with MND to talk through management options, including end of life decisions and Advance Decisions to Refuse Treatment (ADRT), as early as possible.
- See our information on palliative and end of life care.
Can you identify the person with MND as having a neurological condition on your practice IT system?
- If no: Use the appropriate coding so your system flags when the person contacts the surgery and the appropriate response can be given.
Is the person’s care regularly discussed within the primary healthcare team (PHCT)?
- If no: Put the patient’s name on the Supportive Care Register within your practice.
Is there a member of the PHCT who has been nominated as the co-ordinator of the patient’s care?
- 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.
Are efforts being made to control all symptoms currently being experienced by the person with MND?
- If no: Look at options for management. If symptoms are still uncontrolled, refer onwards.
Is it flagged with the out-of-hours service provider that this person has MND?
- 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.
Is the ambulance service aware of any DNACPR order/ADRT/preferred place of care request?
- If no: Notify the ambulance service so it can be flagged on its system to prevent inappropriate care or treatment.
Are you aware of the name of the main carer for this person?
- If no: Record the name of the main carer and their contact details on your practice system.
If the carer is registered with your practice, is their record cross-referenced on your system?
- If no: Put a flag on the carer’s record so you are aware of any potential impact on the carer’s health.
Do you know what the patient’s wishes are in relation to end of life?
- If no: Use active listening skills to clarify these as the opportunity presents.
Have end of life wishes been recorded, so other members of the PHCT are also aware?
- If no: Encourage the patient to record their wishes and make other members of their family and the PHCT aware.