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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.

55,000 name petition arrives on the doorstep of Number 10

August 7, 2019

Representatives of the MND Association have presented a 55,000-name petition demanding the Government change the benefit rules for people with a terminal illness to Number… Read more »

MPs elected to parliamentary group on MND

July 18, 2019

  The All-Party Parliamentary Group (APPG) on MND held its AGM last week and elected the Officers for another year. Madeleine Moon MP (Labour, Bridgend)… Read more »

Disabled people hardest hit by welfare reform, according to new report

July 16, 2019

Disabled people are four times worse of financially than non-disabled people as a result of welfare reforms, according to new research commissioned by the Disability… Read more »

DWP to review benefit rules for terminally ill people

July 11, 2019

Today Work and Pensions Secretary Amber Rudd will formally announce a review into how the benefits system supports people nearing the end of life and… Read more »

Parliamentary drop-in attracts more than 60 MPs and Peers

July 4, 2019

More than 60 MPs and Peers accepted an invitation to meet people with MND, Association volunteers and health and social care professionals at a Parliamentary… Read more »

MND Association welcomes report findings…

July 3, 2019

A report revealing terminally ill people face devastating and far-reaching financial hardship because of a ‘made-up policy fudge’ has been welcomed by the Motor Neurone… 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