Navigating the system
MND association advisor
Someone from an MND or ALS organisation whose job is to help you work out what exists near you and how to get it.
Not a health professional. This role exists because of how support is funded and organised.
Most countries have an MND or ALS organisation, and most of them employ people whose entire job is helping families navigate. They are not clinicians and they are not part of the hospital, which is often what makes them useful. They can say what is actually available locally, what other families have found, and what the health service will not tell you because it does not know.
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
- Explaining what exists near you, which is the question hospitals answer worst
- Equipment loan, where the organisation runs a loan pool
- Help with funding applications, forms and motivation letters
- Grants for costs that fall between services
- Connecting you with other people living with ALS/MND, if you want that
- Information written for families rather than for clinicians
- Support for the person caring for you, and for children in the family
When you might meet them
- Early. Most people contact them much later than they wish they had
- When you have been told to arrange something and do not know where to start
- When a piece of equipment is needed sooner than the funded route will deliver it
- When a funding application has been refused
- When you want to talk to somebody who is not a clinician
Things you could ask about
- What do you actually do, and what does it cost?
- What is available near me that I would not know to ask for?
- Do you have equipment I could borrow while I wait?
- Can you help with this form, or with an appeal?
- Is there someone I could talk to who has been through this?
Not to be confused with
Not a clinical service, and not part of your hospital team. They cannot change your medical care. What they can do is tell you what exists and help you get it, which is frequently the thing nobody else is doing.