Applying for financial support: M

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M, who wishes to remain anonymous, has FSHD. He also has additional complications related to the condition.

M’s application for Disability Living Allowance (DLA) was initially rejected. He contacted a charity called DISC, which looked at his application and said it had been rejected because the language wasn’t tailored to what assessors look for. When applying again using different language, M moved on to the next stage of the process.

When it came to M’s assessment, the centre was not accessible. It was based in an old psychiatric hospital sited at the top of a very steep hill and at the end of a long driveway. The car park was at the bottom of a small hill. Having worked there previously, M knew there were disabled parking spaces available, but these were not signposted. Access to the centre itself was through traditional double doors – not automatic – which M’s wife had to open for him. The reception was not suitable for people with physical disabilities, and the assessment room was through more doors. The assessor sat behind a large desk and was a retired nurse, who had no experience of neuromuscular conditions.

M says:

The DLA application process was not conducive to helping people at any stage. It felt like being Oliver and asking for some more to eat. You’re made to feel like you’re guilty until proven innocent, and then only on the basis of the assessors’ rules, not the rule of law.

The current system must be staffed by doctors who know what they’re talking about. It should also be open to outside scrutiny, not by quangos, but charitable organisations, and brought within the rule of the law.

He adds:

Assessment centres must be accessible and suitable for people with physical disabilities – not as a Grand National course for claimants. They should be designed to help, not hinder, responsible claims, and reports should be seen by the claimant before they are sent for appraisal. The person making the decision should be medically qualified.