How was NIV4MND created?

Importance of providing care through a pathway and key findings from our project

Dr Esther Hobson

“I’m Esther Hobson, I’m a Consultant Neurologist and I’ve been leading the NIV4MND toolkit project. It’s not easy to help people use NIV to the best effect, but we know that it works really well. It’s important to look at every stage of the pathway that the patient goes through; from diagnosis, deciding they have respiratory failure, starting NIV, making sure it’s working well for the patient - and also helping them when they’re becoming more dependent and thinking about the end of life.

Those things can be really challenging and were hoping that this toolkit can help people to learn more about those things and to use some of the expert experience that we’re going to show you, to help them in their daily practice and how they might deliver it. We know that there’s loads of good work going on around the country but there’s more that could be done to help patients. We’ve summarised this all into our toolkit and we hope that you could take away something from it to help you with your daily practice.

The most important things we learnt when we did this project was the importance of teamwork and that everyone has a role in helping a patient get the most out of NIV. Whether that’s to prepare the patient, to talk to them, to help them explore some of their fears or worries, to help them understand why NIV might be helpful or how you need to persevere with it and try it out.

Whether that might be about avoiding delays, to make sure that you pick up on signs of respiratory failure early, and you get on and you start patients on NIV at that point, and also to avoid delays in getting them optimised on NIV, to make sure they’re actually using it as effectively as they can.

We also learnt that we need to be open and honest with our patients throughout the disease process and prepare them for the later stages of the condition, where they may become more dependent on NIV; and they might eventually decide they would like to withdraw from NIV, or to continue to use it right to the end of their life. So we have some information about how you might prepare a patient and discuss withdrawal, or manage the symptoms, when they’re becoming more dependent.”

Why was the research project carried out

Professor Chris McDermott

“NIV4MND is a large project, funded by the NIHR Research for Patient Benefit programme. What drove us to want to undertake this piece of work was a realisation that, even though we know that NIV is very effective at improving survival and quality of life for people with motor neurone disease (we know that from the research studies that have been done), when you look at what’s actually being delivered in services, there are huge variations around the country.

What we wanted to do was look at what were the best ways of delivering NIV, by healthcare practitioners, and what worked best for patients, in their own homes using NIV. So, the NIV4MND toolkit is to help healthcare professionals to deliver the best experience for patients.”

What did the project entail

Professor Chris McDermott

“The project was split into several phases. We had this idea that there was a lot of variation going on and surely there was a best way of doing things. So we took a step back initially and we went to the literature and did a systematic review. We looked at published research trials, we looked at guidelines from institutions like NICE and other guidelines from around Europe and the world, so we could get an idea about what the best evidence was.

We then conducted a large survey of healthcare practitioners involved in delivering MND care and NIV care around the country. We then organised some focus groups where we sat down with people with the experience of delivering NIV and found out how they went about it; what were their concerns about delivering non-invasive ventilation to patients; what they thought was best practice; what were the obstacles and the do’s and don’ts of delivering an NIV service.

So then we triangulated all that, put that all together, and the next phase was to work with healthcare practitioners and people living with motor neurone disease to develop the NIV4MND toolkit for people to use to put things into practice.”