Patient Story – Ian/Rachael

Ian and Rachael Flatt live in Green Hammerton in between York, and Harrogate with their two daughters Charlie and Izzy, and their cocker spaniel Nealla. Ian was diagnosed with motor neurone disease (MND)  in 2019. The condition affects the way that Ian’s neurones communicate, and it is particularly pronounced in his respiratory system, which means he can have difficulty breathing.

Ian’s wife Rachael is his carer and looks after him day-to-day. She recalls that Ian first started getting symptoms in 2017. She says, “He first got a bit of a twinge and a loss of grip, but gradually became more pronounced. I think Ian knew a long time before I knew, and I know for sure that Ian had narrowed it down to MND before he told me.”

Ian was managing director of the family engineering business He had always been full of energy and usually only slept for about four hours a night. He didn’t want to waste time. He worked hard and played hard, loving being outdoors and spending time with the family. But when the fatigue started to affect his business and his interaction with clients, he had to stop working.

He was alerted to the probably of MND by one of his hero’s, the rugby player Doddie Weir, who had the condition. It was a relief of sorts when he was finally diagnosed in March 2019 as he felt that he knew what to do at that point.

A referral to the respiratory team at St. James’s hospital in Leeds followed and he was issued with a home ventilator straightaway.

Rachael picks up the story. She says, “I noticed a difference in Ian straight away. Although to begin with Ian only used the machine for 4 hours a night, it made him more comfortable he got a better sleep. The children were a bit uncertain so we decided that we’d give it a name and and now the ventilator is called Vespa which seemed to help them to accept it.”

Ian now uses Vespa for about 16 hours a day but has additional lightweight portable machine which hooks onto his chair so doesn’t have to stay indoors. This has reintroduced more normality to their lives and it has meant that Ian can enjoy doing what he loves most, being outside. Last year he climbed Snowdon with Vespa and this year he is planning to run the Rob Burrows’ Leeds marathon and also to do some challenging endurance walks.

Ian acknowledges that to begin with he fought using the ventilator. But his advice to other MND patients is to listen to your body and accept help from the medical professionals.

Ian says, “Obviously the way that MNT progresses, my respiratory system is is weaker now than it was then, so my dependency has increased, but I actually embrace that now. I spend time on Vespa and it rests my whole body, giving me the energy to do the things I enjoy. I should have listened to the advice I was given in the beginning, rather than being stubbornly determined not to use the ventilator.”

Ian and Rachael both praise the support available from the respiratory team. Ian was made to feel like an individual rather than just another patient.

Rachael continues, “They work with Ian to find what works best for him, and I think that’s really important. And we’ve had that from day one. Ian was quite reluctant at first and quite determined not to be on it for too long. So they showed us how we can tweak things so that if he was having a more tired day, we could change the settings.”

The final word goes to Ian. He says:

“It’s trying to be open minded. It’s trying to embrace the fact that it is a solution. It’s something that one way or another yes, it’s impactful on your life, but it’s impactful in a good way. So embrace it. Embrace the help that’s been offered. Embrace the knowledge that they’ve got and the expertise. And you then find that you can plot your own way. Enjoy it!

Please watch the videos below to find out more about their story – split into 3 parts: