Information for the public

If MND is diagnosed

If MND is diagnosed

Information and advice

A consultant neurologist with expertise in MND should tell you about the diagnosis, how they think MND is likely to progress, and explain what will happen next. They should also tell your GP straightaway.

You should be given the contact details for the healthcare team that will be looking after you (your MND multidisciplinary team), and advice about what to do if you have any worries or concerns.

You should be asked if you would like to have a face‑to‑face appointment with a member of the multidisciplinary team. The appointment should happen within 4 weeks of being told you have MND.

You should be given information and advice about MND when you are first diagnosed, in appointments with your team, and whenever you ask for it. The information can be shared with your family or carers if you would like to include them.

You may also like to read NICE's information for the public on patient experience in adult NHS services. This sets out what adults should be able to expect when they use the NHS. We also have more information on the NICE website about using health and social care services.

Questions you might want to ask about MND

Questions about MND

  • What is MND and what causes it?

  • Are there different types?

  • What are the symptoms and how can I deal with them?

  • How might the symptoms get worse?

  • What are cognitive changes and how do I know if I've got any?

  • What is frontotemporal dementia and how do I know if I've got it?

  • What will happen next with my healthcare?

  • Are there any treatments available?

  • Is there a cure?

  • How long will I live?

  • What will be the impact on my day-to-day life?

  • Will my children get MND?

  • How do I tell my family and friends?

  • What about when it comes to the end of my life?

Questions about your care

  • Where will my appointments take place?

  • Which healthcare and social care professionals will be looking after me?

  • Who will organise my care?

  • Who do I contact if I've got any worries or concerns?

  • How long might I have to wait for consultations, tests and treatments?

  • What local services (including social care services) are available and how can I get in touch with them?

  • What local support groups, online forums and national charities are available and how can I get in touch with them?

  • What about legal rights, including social care support, employment rights and benefits?

  • Are there any legal requirements I need to know about, for example, I drive, so do I need to tell the Driver and Vehicle Licensing Agency (DVLA)?

  • Can I carry on with my job?

Help with social care

If you need support from social services, for example, if you live alone or care for someone else, you should be referred to social services because you may be able to get some support. Anyone who cares for you can have a Carer's Assessment of their needs because they may be able to get some support too. Your multidisciplinary team can give you more information about the help that is available.

Help with communicating

MND can cause problems with talking and communicating, so you should get extra help in appointments if you are having these problems.

Help with making decisions

MND can cause cognitive changes – problems with thinking, language, behaviour and personality. You should get extra help and support in your appointments if you need it.

These changes can be part of the normal ageing process, but they can also be linked with a type of dementia called frontotemporal dementia that affects some people with MND. You may be referred for an assessment to see if you have any signs of frontotemporal dementia. NICE has produced separate guidance and information for the public on dementia – see other NICE guidance for more information.

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