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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.

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 »

MPs meet to discuss MND research

October 19, 2018

On Wednesday 17 October 2018, the All-Party Parliamentary Group (APPG) on MND met to discuss MND research. Dr Brian Dickie, MND Association Research Director, spoke… Read more »

Consultation response on the Government’s plans to move claimants onto Universal Credit

August 22, 2018

The MND Association has responded to the Social Security Advisory Committee’s consultation on the Government’s plans to move benefits claimants onto the new Universal Credit… Read more »

Over 75 councils have now adopted the MND Charter

August 1, 2018

Over the last few months our volunteers have been working hard to get their local councils to adopt the MND Charter as part of our… 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