Shorter injection cycles |
“Every 8 weeks cause that’s when the effect wears off and the pain starts to become unbearable”. |
“As soon as they start to wear off, ie, around every 6 weeks”. |
“Every 6–8 weeks would be nice :-)”. |
“I would, if I could, choose to have my injections every 6 weeks but I know that’s not possible”. |
Flexible injection cycles |
“Would feel more stable/in control if injections flexible, life would be a bit more predictable instead of a constant roller coaster of symptoms”. |
“More accessible, flexible treatment. If you have the flu you don’t have to live with your symptoms for 6 weeks before your doc will see you”. |
“… it being available to everyone, no matter where they live and on a regular basis when they need it”. |
“It would be great if I could get the injection whenever I need it”. |
Barriers to shorter/more flexible injection cycles |
Staff and resource shortage: “I find it too stressful to call for a doc’s appointment … wouldn’t like the stress of calling and not getting an appointment for a few weeks”. |
“They (the hospital) don’t have a nice friendly secretary who can arrange an appointment; it’s done by the ‘appointments department’ so therefore no understanding of my condition”. |
“I once had to go 6 months (before re-injection because of) staff shortages”. |
“The neurologist is always too busy to do more than administer the injections”. |
Journey times: “I hate the long journey for my appointments, and my husband has to take time off work”. |
“I have to go to another hospital approx. 25–30 miles away”. |
Side effects: “Personally, I’d be worried about muscle wastage (which I’ve already had) and increased side effects”. |
“I’ve been told that they won’t inject before the 13 weeks is up to stop you from becoming immune to it”. |