NIV4MND is an online resource designed to support healthcare professionals who are involved in the respiratory management of people living with motor neurone disease (MND)/amyotrophic lateral sclerosis. The toolkit provides information particularly about delivering non-invasive ventilation (NIV).

The information is intended to support you in your practice and is presented along the respiratory patient care pathway. This includes:

If you are a respiratory specialist

You might wish to start with the What is MND? section which gives an overview of the condition, how it affects the use of NIV and some hints and tips about how to manage the condition. The following pages may also be particularly helpful:

Learn more about respiratory management

Start with the What is NIV? page then work your way through the stages of the disease from before starting NIV, to withdrawal of NIV and end of life care.

Patients and carers

We’d really recommend taking a look at the myBreathing website. There is also the MyTube site to support gastrostomy feeding decisions.

The information presented in this toolkit was formulated from our research project and existing guidelines that provide recommendations for healthcare professionals. These can be found in resources.

Learn more about our research project

In the following clip Dr Esther Hobson, a Consultant Neurologist, gives advice on how to use NIV4MND.

Video transcript

How to use NIV4MND

Dr Esther Hobson

“You can dip in and out of the toolkit however you want. You might want to come back and have a look at it if you’ve got a difficult patient; or you might want to recommend it to people that have got not as much experience as you in caring for people with MND. Or if you’re not sure how an NIV machine works or how you might support the respiratory team with a patient that you have.”

Links to resources are available at the bottom of each page and there are also opportunities throughout the toolkit to reflect on your current practice.

The search button in the top navigation menu enables you to search through the entire website quickly so you can find what you are looking for. Throughout the toolkit, we provide ‘good practice points’ which are top tips on best practice, and there are frequently asked questions in each care pathway section..

In the following clips Professor Chris McDermott, Consultant Neurologist and Debbie Freeman, a Respiratory Nurse, give their advice for healthcare professionals who want to learn more about NIV in MND.

Video transcript

Professor Chris McDermott

“The advice I would give somebody who’s coming new to an MND service, and perhaps is going to be involved with non-invasive ventilation and respiratory management, is to speak to colleagues. There’s a wealth of experience, probably within your own centre.

NIV4MND captures the expertise - years of expertise - of people. So use this resource that is being created especially for people like you; and remember that you are part of a team and there will be many people working together in a multi-disciplinary team to offer the best care for people with motor neuron disease. So talk to people and I’m sure that the answers that you want will be there.

We hope that you find NIV4MND really useful to your practice of supporting patients with MND. We are open to suggestions and are keen to hear from you if there are any ways we can improve the toolkit. So do let us know; there is a feedback link within the website, so use it and let us know what you think.”

Video transcript

Debbie Freeman

“The advice that I would give to anybody that wants to learn more about ventilation, NIV, motor neurone disease, and how those three concepts work together, would be to get in touch with the respiratory services. Ask if they have got protocols and guidelines that you can have a look at. You might be able to spend a day with them, we often have people who shadow us in our service from different centres or from different hospitals or even within the trust. Come along and learn some new skills.

I think that most respiratory centres that deal in something that is very specialist are more than happy to pass on that information to people that want to improve the way they deliver care alongside us. I think that it all contributes to having a joined-up team working across the community and other centres, so just get stuck in and come and ask to see us.

Silver network is a fairly new network of respiratory ventilation specialists who deliver long-term ventilation in the home. It’s a great network; all the services in the country that offer respiratory support for ventilated patients are now members of this service. We have conferences, we network, we support each other, we look at improvements in patient care and we did a lot of work with COVID to improve and nationalise standards during the COVID crisis.

We also help support each other in how we improve services; and even though at Manchester we’re quite a big team, we’ve learnt a lot from some of the smaller rural teams that do home delivery services, which is something that we didn’t used to do. So it’s a great resource for everybody that’s interested in improving services really.”

Please note that the information contained within this toolkit is based on UK practice and law. Laws and guidelines in other countries may differ.