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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.

MND Association responds to updated DS1500 guidance

April 24, 2019

The Association recently engaged with the Department for Work and Pensions (DWP) to bring about vital changes to their guidance for medical professionals when deciding… Read more »

Petition to change the law on Special Rules process

December 12, 2018

Over the last few months, many of our supporters and campaigners have taken action on our Scrap 6 Months campaign to help make benefits more… Read more »

A Bill to help all people with MND easily access the benefits they need has been delayed

November 23, 2018

Over the last few months, the MND Association, Marie Curie and Chair of the All-Party Parliamentary Group on MND Madeleine Moon MP, have been campaigning… Read more »

MPs show their support for our Scrap 6 Months campaign

November 14, 2018

MPs have shown their support for our Scrap 6 Months campaign by attending an event hosted by the MND Association and Marie Curie. The charities jointly hosted… Read more »

Medical experts support call for shake up of benefits process

November 13, 2018

A call to reform rules for terminally ill patients applying for disability benefits is backed by neurologists and GPs across the country, in a new… Read more »

Response to Autumn Budget 2018

October 30, 2018

The Chancellor opened his 2018 Budget speech by describing it as ‘a Budget for the strivers, the grafters and the carers’, an interesting formulation which… 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