Mark was forced to give up the many sports that he enjoyed, but started coaching football. He did this for around 19 years, before giving it up due to mobility. Mark tried to walk for as long as it was possible, but now mostly uses a wheelchair for safety.
Eighteen months ago, Mark requested a home visit for his Personal Independence Payment (PIP) assessment, as Disability Living Allowance (DLA) was being phased out. He describes the assessor as pleasant, but says she had no knowledge of his condition. The assessor admitted she had not heard of limb girdle muscular dystrophy, and Mark says it was clear she didn’t understand what he could and couldn’t do:
I have no problem with being assessed, but felt the person who carried out my assessment did not have the training to understand my condition and the changes that occur from day-to-day. My condition has worsened a lot of the past 18 months, but I’ve held off asking to be reassessed due to my experiences in the past.
Mark was asked if he could walk upstairs or stand on one foot, which he explained he couldn’t, otherwise he would fall over. He was also asked about preparing food, and explained that his condition affects his grip, with some days worse than others. Mark explained that he can often hold something to start with, but that his grip gets weaker quickly. To test his grip, the assessor squatted in front of Mark and asked him to grip a finger on each of her hands for two seconds. As a result, her report said Mark’s grip was fine, and that he could carry pots, pans and food.
Mark says:
Assessors should have a level of knowledge about the applicant’s condition. A GP or medical professional would be better suited, in my opinion, than a trained layman. The tests also need to be more realistic. I found it difficult to explain how well I could do certain things, as it can change from day to day.
He adds:
The assessors seem to want to put every little aspect into a designated box. If your answer doesn’t fit into one of those boxes, it is very uncomfortable to try to explain. I was flabbergasted when I read the assessor’s report that claimed I could carry food. I would never dream of trying to walk with a hot pan, or even a cold one, as in the first instance my grip would weaken quickly and in the second instance I might fall at any time.