Make your mark on Global MND Awareness Day

In our 40th anniversary year, the MND Association is using Global MND Awareness Day to urge people to sign our petition calling for a quicker and easier process for people with a terminal illness to claim welfare benefits.

The hope is that by the time the petition is handed into 10 Downing Street in early August there will be 17,070 signatories, matching the number of people who have died while waiting for a decision on their Personal Independent Payment in the last six years.

The Association is working with Marie Curie and is backed by a number of eminent clinicians who have today written to the editors of national newspapers calling on the Government to urgently reform the fast track benefits application process known as the Special Rules for Terminal Illness. At the moment this process is only available to those with less than a six month life expectancy.

The letter says: “This requirement is fundamentally flawed. Few terminal illnesses operate to a timeline – the only certainty is that the person affected will die. Whether that is within a week, a month or a year is irrelevant in terms of access to often desperately needed financial support.”

In an independent poll by Medeconnect for the Association, 73% of neurologists supported replacing the six month requirement with one based on a clinical judgement.

For people like Steph Douglas any change in the rules is already too late. Steph and husband James faced a string of financial woes when his initial benefits claim was refused, despite his diagnosis of MND. You can read Steph’s story here.

Steph has shared her story willingly on Global MND Awareness Day, five months after James’s death because “James felt so strongly about helping others in similar situations. Let’s hope he can leave behind a legacy. He would be proud and happy of that.”


For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262