‘I feel very uncomfortable’: an ALS patient’s long wait for a wheelchair

WWhen Rosy Bremer, 52, from Portsmouth, applied for a wheelchair from the NHS, she expected it to take almost a year for it to arrive. She has since spent hundreds of dollars renting a private car while she waited, despite her motor neurone disease (MND).

Bremer is one of many who have had problems with the private wheelchair company AJM Healthcare. The health ombudsman told AJM to improve its complaints system due to concerns about delays. Some people with disabilities have reported waiting up to two years for a seat.

Before her ALS diagnosis, she had problems with her mobility. “Last year I requested my first wheelchair around the summer. I had problems with my mobility but didn’t know I could get a wheelchair on the NHS,” she says.

Bremer hired a private wheelchair while she waited, which initially cost £100 per week, although the cost later dropped to £30 per week as she had it for longer. “I rented it short term, but months later I still have it.”

To get a wheelchair, Bremer had to go to the doctor twice to be measured. She subsequently had one home visit from a physiotherapist, organized through AJM. It is the physio’s job to order the wheelchair, but her first appointment was canceled due to staff illness. “The replacement appointment was then not in the system, even though I had received an appointment letter,” she says.

Ultimately, a physiotherapist took measurements. They also discussed what type of wheelchair was needed based on her clinical needs. The wheelchair was prescribed in January, months after she initially requested it. “At the time I was not diagnosed with ALS, but had a neuromuscular disorder,” says Bremer.

In March 2024, Bremer received a diagnosis of motor neurone disease, which she said should mean her referral is “classified as urgent.”

She says: “I have contacted AJM Healthcare… (they) cannot give me anything resembling a date when I can expect to receive my wheelchair.

“I can’t get anything out of it, except that there is a backlog that needs to be cleared. I don’t know what that means…but that’s all I know.”

The wheelchair that Bremer rents does not have postural support. She says that as her “head, neck and back muscles deteriorate, it becomes more and more uncomfortable.” She also has rheumatoid arthritis and finds the armrest and joystick unsuitable. “It is annoying and… as my condition progresses, the lack of proper support for my head and neck means I feel very uncomfortable when I sit in my wheelchair.”

The wheelchair is also expensive and Bremer no longer works because he is medically retired. As a result, she has incurred costs trying to finance a wheelchair on an interim basis from a private provider with the help of family.

“MND is a complex disease, which means I have to deal with many different bodies… Navigating that adds to the incredible burden that comes with having a disability,” she said.