About NIV4MND

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.”

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.”

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.”