‘I would be lost without it’: How breathing support has changed life for Peter living with Motor Neuron Disease

When Peter Camburn was first offered non-invasive ventilation (NIV), a treatment that supports breathing using a mask connected to a ventilator, he wasn't convinced it was for him.

“I didn't like the prospect of wearing a mask all night,” Peter said. “I felt that I wasn't experiencing symptoms like falling asleep often in the day or feeling drowsy, so I rejected the offer.”

Peter had been diagnosed with Motor Neuron Disease (MND), a life-shortening condition that affects the brain and nerves, causing muscles to become progressively weaker. As the condition advances, it can affect the muscles responsible for breathing, making support such as NIV an important part of care for many people.

Following investigations by the Sleep and Ventilation team at Royal Stoke Hospital, Peter was diagnosed with severe obstructive sleep apnoea alongside MND. Although NIV was offered, he initially decided against it.

It took a frightening experience at home to change his mind. “I fell off my chair, cut my head on the corner of the sideboard and ended up on the floor, unable to move,” he recalled, “I was convinced that I had fallen asleep sitting at the table.”

After this incident, Peter decided to give NIV a try. He has used it every night since.

Starting NIV wasn't without its challenges. Like many people adjusting to the treatment, Peter needed time and support to find a solution that worked for him. “There were, of course, a few teething problems,” he said.

He experienced several difficulties, from biting his cheek in his sleep to managing saliva secretions that collected inside the mask. The full-face mask he initially used also caused a wound on the bridge of his nose. “After consulting the helpful Sleep and Ventilation Team, a different mask was suggested. I still use that mask today.”

With support from his healthcare team, Peter was able to overcome these initial difficulties and find a mask that suited his needs. His experience highlights how important ongoing, personalised support can be when someone begins using NIV.

For Peter, persevering with the treatment has made a significant difference. Peter said: “When I started to use NIV, the coughing was significantly reduced, and I generally get a good night's sleep. I get less fatigued during the day and therefore can tackle the many difficulties MND presents better than before.”

The benefits have been so significant that Peter, who once rejected the idea of wearing a mask overnight, now says he “would be lost without it”.

Peter knows that his experience is not necessarily shared by everyone living with MND. While NIV can help people breathe more comfortably, improve quality of life and potentially extend life, adapting to the treatment can be difficult. Without the right support, some people may struggle to use it and miss out on its potential benefits.

That is why Peter has become involved in the DENIM trial (Delivering Effective Non-Invasive Ventilation in Motor Neuron Disease), a national study led by the University of Sheffield.

Funded by the NIHR Health and Social Care Delivery Research Programme, the study aims to improve the support people receive when they begin using NIV. Peter is a member of the trial's Patient and Public Involvement and Engagement (PPIE) advisory group, where he and others affected by MND help researchers understand what matters most to people receiving the treatment.

For Peter, being able to use his own experience to help others has been particularly rewarding. Peter shared: “The opportunity to be part of the DENIM Patient and Public Involvement Group has been so rewarding. I'm aware that not all NIV users are so fortunate, but DENIM sets out to deal with that inequality.”

The trial is testing an enhanced model of NIV care across 12 NHS ventilation teams in the UK. Around 250 people with MND who are beginning NIV will take part. Alongside their usual NHS care, half will receive additional support, including remote monitoring of their ventilator, more frequent contact with specialist teams and personalised care based on their own goals.

The approach recognises that starting NIV is not simply about being given a machine. People may need help finding the right mask, managing side effects and adjusting to a new part of everyday life. The study will assess whether more tailored support can help people use NIV more effectively and improve their experience of care.

By involving people like Peter in shaping the research, the team hopes to ensure that the support offered reflects the real challenges faced by people living with MND and their families.

Peter's journey from initially refusing NIV to relying on it every night has given him a personal understanding of both the challenges of treatment and the difference the right support can make.

He hopes the DENIM trial will help more people with MND overcome the difficulties he experienced and access the benefits of NIV. Peter said: “The potential for NIV to enhance the quality of life for MND patients is huge. It might even extend life. So, DENIM matters for the whole MND community.”

Through sharing his experiences and contributing to the research, Peter is helping to ensure that the voices of people living with MND remain central to efforts to improve care.

His story is a reminder that behind every clinical trial are people navigating the realities of a life-changing condition and that listening to their experiences can help make treatment and support better for everyone.

Read Peter's full blog on the DENIM website.