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Navigating the system

Social worker

Helps with the parts of this that are not medical, from money and work to housing, family strain and knowing what you are entitled to.

A social worker deals with the practical and emotional consequences of illness rather than the illness. Money, work, benefits, housing, care arrangements, family relationships and how everyone is coping. In many teams they are also the person who knows the local system best, which makes them one of the most useful people to meet early and one of the most commonly met late.

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

  • Working out what financial support you may be entitled to, and helping with the forms
  • Work, income and what to tell an employer
  • Arranging care at home, and what happens if the person helping you cannot continue
  • Housing problems, including when a home cannot be adapted
  • Family strain, including children and young people
  • Advance care planning conversations, alongside the clinical team
  • Knowing which local service does what, which is often the real question

When you might meet them

  • Early, before there is a crisis, because most support takes time to arrange
  • When income or work has changed or is about to
  • When the person helping you is struggling
  • When care needs have grown beyond what the household can do
  • When housing has become a problem
  • At any point where the question is really "how do I arrange this"

Things you could ask about

  • What am I likely to be eligible for, and what should I apply for first?
  • How long do these applications usually take here?
  • What happens if my carer becomes unwell?
  • Who else should I be talking to that I have not thought of?

About this entry

Not everyone meets all of these people, and nobody here is compulsory. Who does a particular job differs between countries and between services, so treat this as a way to understand who is who rather than a description of the team you should have.

Based on NICE MND guideline, SSDI and Medicare for ALS.