MND Awareness Day – Stephen’s story

It started with a shortness of breath back in 2019. 61-year-old Stephen Boam started noticing that it was more difficult to work and walk around like he usually had been. Now 63 years old, Stephen is at home after being diagnosed with Motor Neurone Disease (MND), a rare condition that affects the brain and nerves. More prevalent in men, it affects two in 100,000 people every year.

“I initially went to the doctor and was referred to the hospital for tests. They tried to fit stents in to address potential cardiac issues, but my arteries were too wide, so I was sent home.” said Stephen.

“My symptoms weren’t improving, and a friend took me back to hospital. I started walking with a hunch, and with the pandemic affecting hospitals, it was harder for the doctors to be able to investigate. Eventually, I was referred to the Neurology department at Castle Hill Hospital in Hull, and a consultant diagnosed me within 10 minutes of speaking to me.”

Stephen was determined to carry on as normal for as long as he could. His entrepreneurial spirit, borne from his passion for teaching through working with local councils and logistics, has seen Stephen develop a strong forklift certification business, which was founded in 1995.

Despite working from home, Stephen is still running the business in the Scunthorpe area, where he was born and has lived all his life.

Stephen said: “I spent most of my adult life in the T.A, which was formerly known as the Army Reserves. I spent 38 years there and got my HGV licence through it. It was there where my passion for teaching was born, and it’s why I set up my business.

“I continued working after I was diagnosed with MND and it was one night while I was working with my secretary, they noticed that I was slurring my speech. They phoned the ambulance and I ended up being admitted to the ICU for six months.”

Stephen recalls his first two months where he felt hopeless – and eventually he was given the choice of going into a care facility or going home with live-in care.

Sure Healthcare, which provides various levels of care throughout the region, has provided that support. Sure Healthcare staff spent two months being trained by the nursing and physiotherapy team at Scunthorpe ICU on tracheostomy training and use of the ventilator so that Stephen had the best support he could from home. The Sure Healthcare Complex Care Assistants had concurrent theoretical training developed and delivered by the Sure Group Clinical Lead and in house simulation and scenario-based learning, with extensive support from the Hull and East Yorkshire Hospitals’ Home Ventilation Team Nurse Specialist.

Stephen said: “Going home was a no-brainer for me.

“I’m determined to get things done, on my own terms, in my own home, and Sure Healthcare has provided that opportunity for me.

“It’s allowed me to ensure that my business continues, and I can pass it on to others in my own time – it has been my passion for the last 27 years and I wanted to make sure it was in good hands.

“The support I’ve had from the team at Sure Healthcare has given me the independence I need to be able to do that.”