4 November 2024 Association News
The MND Association is increasing the value of its Cost of Living Support Fund to £500, which can be applied for by people with MND struggling with household bills and food and shopping costs.
The uplift marks a £150 increase, from £350, and those who have already received the previous amount can still apply for the difference should they need to.
The scheme, which launched in 2023, is not means tested and is available annually to people living with MND or Kennedy’s disease who have a confirmed diagnosis or suspected diagnosis from a health professional.
The changes came into force on 1 November as part of the response to the latest survey from the charity which revealed over 80% of carers of people with MND have used savings or retirement plans to cover household costs.
Furthermore, research in 2023 found households affected by MND spend an average of £14,500 a year on costs associated with living and managing the condition - a clear indication the financial impact of the disease has never been higher.
The current economic climate is seeing more charities step in to fill the gap left by a lack of support from the Government and statutory services.
Tracy Brown, 59, lives with her husband, Dave, 54, in Colwyn Bay. He was diagnosed in October 2023 after having problems with his speech and mobility issues.
They have previously used the Cost-of-Living Fund, which was highlighted to them by their local Area Support Co-ordinator Jo Cunnah.
Tracy said: “I was talking to her on the phone during midwinter, and I was saying that we were having a fire in the front room because we were concerned about putting the heating on.
“Dave, with this disease, has noticed if his joints are cold, it makes his condition worse so Jo said we could have the Cost-of-Living Fund to help with that.
“I feel that you shouldn't have to have that kind of financial worry when you're going through all of this at the same time.”
In 2023, 1269 people applied for the grant, 25% of the people with MND known to the Association. We anticipate by the end of this year just under a third of people with MND known to the Association will have applied to the fund in 2024.
Sally Hughes, Director of Services and Partnerships at the MND Association, said: “We know many people living with and affected by MND will be anxious and worried as household costs continue to rise.
“As we head into the colder months, we want to ease the financial burden on people with MND. People shouldn’t have to worry about whether to eat, heat their home or turn on vital equipment.
“It is once again another example of charities stepping up where statutory services have failed to do so.
“What we really need is for the Government to do more to help vulnerable people rather than take away support, as they have with the recent changes to the Winter Fuel Payment."
The MND Connect team is available to share more information about the Cost of Living Support Fund and other ways the MND Association can help. The team can be contacted on 0808 802 6262 between 9am and 4pm Monday to Friday.
If you wish to apply, you can find the details about our financial support grants here.