Information for the public

Treating breathing problems (non‑invasive ventilation)

Non-invasive ventilation uses a portable ventilator, which is a machine that supports the person's breathing. Non‑invasive ventilation can improve quality of life and length of life, but it cannot stop MND progressing.

Information and support about non‑invasive ventilation

Your multidisciplinary team should talk about non‑invasive ventilation with you, and explain what it can do and what the other options are, including medicines. They should explain that it can be stopped whenever you want, and reassure you that you can ask for help and advice at any time.

If you decide to use non-invasive ventilation, your team will check that you understand it and what is involved. They will check that your family or carers are able and willing to help, and talk to them about any training they will need, and any concerns they have. Your team will provide you and your family or carers with the support you need to use non-invasive ventilation.

Starting non-invasive ventilation

If your team thinks non‑invasive ventilation could help, you can use it for a trial period.

Before starting it, your team should prepare a care plan. They should talk about this plan with you and your family or carers, and offer you a copy. These are the areas your care plan should cover.

Non-invasive ventilation care plan

  • How your team will support you.

  • How often you will see the team for respiratory tests and to check if non-invasive ventilation is helping you.

  • What help you will have from family or carers.

  • The training and support that you and your family or carers will need.

  • The equipment needed and arrangements for its maintenance.

  • What to do if you decide that you do not want to continue with non‑invasive ventilation.

You should have the chance to get used to the equipment during the day. If this goes well, it is likely that you will start regular treatment at night, as you are settling down to sleep and when you are asleep. The amount of time that you use the ventilator for can be increased gradually as needed.

Many people with MND find that non‑invasive ventilation helps them, but it does not suit everyone. You should have regular checks, and your team should discuss with you whether or not to continue the treatment, depending on whether it is helping you.

A member of your team may also talk about medicines to ease breathlessness that you can keep at home and use as you need them.

Stopping non-invasive ventilation

If you no longer want to have non‑invasive ventilation, your team will support you and your family or carers with this.

If you have frontotemporal dementia

If a person with MND and frontotemporal dementia has breathing problems, the neurologist should talk about whether non-invasive ventilation may be suitable. This may depend on how the dementia is affecting the person, whether the person is able to make decisions and agree to treatment, and whether the treatment is likely to help. The person's family or carers should be involved in the discussions.

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