ALS Clinics

Used across the whole answer

✓Supports this

“If you cannot get to a specialist clinic, care can still be coordinated through professionals nearer home.”

Its section for people who live far from a clinic gives this route directly: ask the ALS neurologist or the local ALS organisation to recommend a general neurologist or medical team nearer home, ideally one willing to learn about ALS and work with the clinic team.

If you cannot attend a clinic in person, ask your ALS neurologist or local ALS organization if they can recommend a general neurologist or medical team closer to you.

What if I live far from the nearest clinic?

✓Supports this

“Telehealth can connect someone to specialist ALS/MND input without travelling to the clinic.”

Says virtual visits with the same clinic team are possible where the clinic offers telemedicine, and repeats the point for people who cannot travel at all. It does not say how common this is or whether it works as well as being seen in person.

If the clinic offers telemedicine, you may be able to schedule virtual visits with the same medical team.

What if I live far from the nearest clinic?

Used across the whole answer

Used across the whole answer

iAdds context

“People diagnosed with ALS/MND are meant to be given one named point of contact for the specialist team.”

A practical guide to how ALS clinics run in the United States, which names the clinic coordinator as the person to contact between visits. It describes one country's usual practice rather than establishing the general point.

If you have questions or concerns between your visits, do not hesitate to contact the clinic coordinator.

How do ALS clinics work?

Used across the whole answer

Used across the whole answer

✓Supports this

“A multidisciplinary clinic can replace several separate appointments with one visit that covers the whole team.”

Describes what a clinic visit looks like in practice: you stay in one room for a few hours and the specialists come to you in turn, instead of you travelling to each of them separately.

For a few hours, you will stay in the same room while the specialists rotate to visit with you, answer questions, and measure your progress.

How do ALS clinics work?

Used across the whole answer

✓Supports this

“Bringing someone with you to an appointment helps, because they can take notes and ask questions.”

Recommends that a caregiver, family member or friend come along to a multidisciplinary clinic visit, and gives taking notes and asking questions as what they help with.

It is always helpful to have a caregiver, family member, or friend accompany you to help take notes and ask questions.

How do ALS clinics work?

Further reading

Finding and accessing an ALS/MND clinic

Further reading

Getting the most from ALS/MND clinic visits

Further reading

What ALS/MND clinics are and how they work

Further reading

Questions to ask about clinic and team care

Further reading

The benefits of coordinated ALS/MND clinic care

Further reading

Making the most of appointments