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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.

Pandemic backlog could leave more people with terminal illness ‘trapped in homes’

September 24, 2020

The Motor Neurone Disease Association has launched its Act to Adapt campaign, calling for more accessible homes and a faster and fairer system for delivering… Read more »

Scrap 6 Months – 14 months and still waiting

September 10, 2020

In July 2019, the Department for Work and Pensions (DWP) announced a review of how well the benefits system works for people who are terminally… Read more »

Scrap 6 Months – One year on

July 6, 2020

A year since the announcement of a review into the benefits system, more than 2,000 have died from MND, many struggling to access the benefits… Read more »

Government’s Response to Carers Open Letter

July 3, 2020

The MND Association has received a response to its open letter to the UK and Welsh Governments concerning unpaid carers. While the Welsh Government has… Read more »

Carers Week 2020 – Letter to the Minister

June 10, 2020

More than 3081 supporters have signed an open letter calling on the Government to provide better support to unpaid MND carers during the COVID-19 pandemic…. Read more »

MPs meet virtually to discuss the impact of COVID-19 on people with MND

June 5, 2020

The All-Party Parliamentary Group (APPG) on MND hosted its first ever online meeting today to discuss the impact of COVID-19 on the MND community. 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