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Life with MND is tough enough without being pushed into financial hardship.

People with MND are being forced to fund care themselves and wipe out their savings because:

  • Benefits and entitlements are not enough to cover the costs MND incurs.
  • Accessing financial support is too difficult and overwhelmingly complex to apply for and the system can also be too slow to respond. This is resulting in some people getting support when it’s too late, in some cases after the person with MND has died.
  • Not enough people are being made aware of the financial support they are entitled to.
  • Until now the cost of MND and the impact on people affected has been largely hidden, and not fully seen or understood by those with the power to change it.

We are campaigning to end the financial hardship faced by people with MND and their families.

Stories

Read the stories of Robert, Vivienne and Sean.

Latest news

Check out the latest MND Costs campaign news, events and blogs.

Fast-track benefits draw closer for people with motor neurone disease in Northern Ireland

January 24, 2022

Legislation to increase access to fast-track benefits for terminally ill people in Northern Ireland reached its final stage today (24 January) in the NI Assembly…. Read more »

Historic vote in the Senedd for home adaptations for those with MND in Wales

December 7, 2021

Last week Senedd Members from across the political spectrum voted overwhelmingly in support of introducing a fast-track and non-means tested process for those with MND… Read more »

Our response to the Social Care White Paper

December 7, 2021

The Government’s White Paper on Adult Social Care, published in December 2021, contains some positive elements but leaves major questions unanswered. The White Paper sets… Read more »

Parliamentarians discuss the impact of targeted funding for MND research in the search for effective treatments and a cure

December 2, 2021

The All-Party Parliamentary Group (APPG) on MND held an online meeting yesterday (Wednesday 1 December) to discuss the recent announcement by the Government that it… Read more »

Act to Adapt campaign given powerful boost by first ever councillor event

November 22, 2021

Tuesday, 16 November, saw the MND Association’s first ever councillor event, a springboard for action just a few short weeks after the launch of phase… Read more »

United to End MND Update

October 27, 2021

The United To End MND campaign is calling on the government to invest £50million in targeted MND research. The following is a statement from the… Read more »

Our principles

What we believe good financial support for people with MND and their carers should look like.

  1. It must take into account the progressive, often rapid, and terminal nature of MND.
  2. People need to be provided with information about the range of financial support available to them and how to access it.
  3. People should feel able and comfortable to claim the benefits and entitlements available to them.
  4. Decision makers must recognise that some people of working age cannot work, and will never return to work.
  5. People should not lose out on financial support on the basis of their age.
  6. People should be exempt from unnecessary reassessments for benefits and entitlements.
  7. Services must take into account the fact that MND creates significant extra costs.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262