Nursing and coordination
MND specialist nurse
Usually the person you actually speak to, who knows both the condition and your situation and can reach the rest of the team.
Where a service has one, the MND specialist nurse is often the most useful contact you have. They know the condition well, they know you, and they are reachable between appointments in a way that a consultant is not. Much of what people describe as good care in ALS/MND turns out on inspection to be a specialist nurse doing their job.
How you reach this person, and who pays, depends on where you live. Set your country in Location and Compass will show what applies there.
What they can help with
- Being the number you ring when something has changed and you are not sure who to tell
- Explaining again, without rushing, what was said in a clinic appointment
- Symptom advice, and getting a prescription changed without waiting for the next clinic
- Chasing referrals and equipment that have stalled
- Practical support with ventilation, feeding tubes and secretions
- Preparing you for conversations you are not ready to have yet
- Supporting the person caring for you, in their own right
When you might meet them
- From diagnosis, if your service has one
- Whenever something has changed and you do not know who to tell
- When you have left an appointment and only afterwards thought of the question
- When something practical has stalled
- Between clinic visits, which is most of the time
Things you could ask about
- What is the best way to reach you, and what is a reasonable thing to contact you about?
- What happens when you are on leave?
- Can you help me get ready for the next appointment?
- Is there anything you would want me to tell you straight away rather than wait?
Not to be confused with
Not a community or district nurse who visits to do a specific task. A specialist nurse is part of the specialist team; a community nurse is part of local nursing services. Some people have both, and they are different contacts.