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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.


Read the stories of Robert, Vivienne and Sean.

Latest news

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

Campaigners meet Ministers to discuss MND research funding

May 3, 2022

Members of the United to End MND coalition have met with Minister for Care, Gillian Keegan to discuss the Government’s £50m commitment to fund motor… Read more »

MND Clinicians call for Spring Booster U-turn

April 13, 2022

Leading MND clinicians have written to the Secretary of State for Health and Social Care to express their concern about the Spring Booster vaccine rollout…. Read more »

Scrap 6 Months changes come into force today in England and Wales

April 4, 2022

After years of campaigning, the Association is pleased to see that as of today the long-awaited changes to the Special Rules for Terminal Illness have… Read more »

DWP is set to begin its long-awaited changes to the Special Rules for Terminal Illness in England and Wales

March 9, 2022

After years of campaigning, the Department for Work and Pensions (DWP) is set to begin introducing its long-awaited changes to the Special Rules for Terminal… Read more »

MPs support improved access to housing adaptations for people with MND

February 23, 2022

The All-Party Parliamentary Group (APPG) on MND held an online AGM today, with a focus on access to housing adaptations. Speakers included: Alex Massey and… Read more »

MND campaigner recognised by Prime Minister

February 10, 2022

A campaigner who is living with motor neurone disease (MND) has received a Points of Light award from Prime Minister Boris Johnson following her involvement… 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