People who may help

The doctors involved in diagnosis, medication and specific parts of your care, and the pharmacist you can reach without an appointment.

• Gastroenterologist

  The doctor who places a feeding tube, and the person to ask what the procedure itself will involve.

• General practitioner

  Your everyday doctor, and usually the fastest route to prescriptions, referrals, certificates and anything that will not wait for a specialist.

• Neurologist

  The doctor who leads the medical side of ALS/MND, makes the diagnosis and oversees medication and monitoring.

• Palliative care doctor

  A doctor who specialises in comfort, symptoms and quality of life, and who is useful long before the end of life.

• Pharmacist

  The most accessible health professional you have, and the right person for anything about how medicines are taken, not just what they are.

• Rehabilitation physician

  A doctor who specialises in function rather than diagnosis, and who often owns the problems that fall between other specialists.

• Respiratory physician

  The doctor responsible for your breathing, who interprets your breathing tests and prescribes ventilation if and when you decide to try it.

The people who work on movement, communication, eating, equipment and how you are coping.

• Counsellor

  Someone to talk to about how this is affecting you, usually easier and quicker to reach than a psychologist.

• Dietitian

  Helps you keep weight and nutrition steady when eating becomes tiring, slow or unsafe, rather than putting you on a diet.

• Genetic counsellor

  Helps you decide whether to have genetic testing, and helps you think through what a result would mean for your family.

• Occupational therapist

  Helps you keep doing everyday activities as your abilities change, and changes the task or the room when changing the body is not the answer.

• Physiotherapist

  Works on how you move, how to keep moving safely, and how to protect joints and comfort as muscles weaken.

• Psychologist

  A mental health professional who works with how you are coping, and who can also assess changes in thinking and behaviour.

• Speech pathologist

  Helps with both being understood and swallowing safely, which is why they are often the first person to notice a change in either.

Who you can actually reach between appointments, and who holds your care together.

• Care coordination

  The job of holding your care together, which different people do in different systems and which sometimes nobody does.

  A job rather than a profession. Different people do it in different services, and in some there is nobody.

• 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.

Things you are referred to rather than a single person you meet.

• Multidisciplinary MND clinic

  One appointment where several of the people who look after you see you in turn, instead of you travelling to each of them separately.

  A service you are referred to, rather than one person you meet.

• Respiratory or ventilation service

  The service that sets up and looks after your breathing support, and usually the people you deal with far more often than the respiratory doctor.

  A service you are referred to, rather than one person you meet.

• Specialist palliative care service

  A team specialising in comfort, symptoms and support, which usually offers far more than most people expect and much earlier.

  A service you are referred to, rather than one person you meet.

People whose job is the paperwork, the funding and finding out what exists near you. Not all of them are health professionals.

• 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.

• 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.

The people who help with daily life, paid and unpaid.

• Family carer

  A partner, family member or friend who helps with daily life, usually without planning to and usually without anyone naming it.

  Someone in your life rather than a job. Nobody has to use this word about themselves.

• Support worker

  Someone paid to help with daily living, from showering and dressing to getting out of the house, and often the support that changes life most.

  Paid support, usually not a registered health profession.

Who works out what equipment suits you, and who supplies it.

• Assistive technology professional

  Specialises in the technology itself, from communication devices and eye gaze to environmental controls and mounting it all where you can reach it.

• Equipment and assistive technology service

  Whoever actually supplies, delivers, funds and repairs your equipment, which in every country is a different organisation from the one that assesses you.

  A service you are referred to, rather than one person you meet.

• Wheelchair and seating specialist

  Works out what a wheelchair and its seating actually need to do for you, which is a much bigger question than what chair to buy.