MND Costs logo

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.

Act to Adapt campaign given powerful boost by first ever councillor event

November 22, 2021

Tuesday, 16 November, saw the MND Association’s first ever councillor event, a springboard for action just a few short weeks after the launch of phase… Read more »

United to End MND Update

October 27, 2021

The United To End MND campaign is calling on the government to invest £50million in targeted MND research. The following is a statement from the… Read more »

Next phase of Act to Adapt launches across England

October 4, 2021

Last year, the MND Association launched the Act to Adapt campaign to push for more accessible homes and a fairer and faster system for delivering… Read more »

Rugby legend Rob Burrow and former footballer Stephen Darby take call for research funding to No 10

September 22, 2021

Rugby legend Rob Burrow and former Liverpool footballer Stephen Darby, along with other people who, like them, are living with motor neurone disease, took their… Read more »

West Sussex South Branch discuss MND research with local MP

August 10, 2021

Last month, members of the West Sussex South Branch, Angela, Judith and Sue, met with local MP Andrew Griffith. They were also joined by Graham,… Read more »

Blog: Scrap 6 Months – Reflections and what happens next

July 21, 2021

Following the recent news of our Scrap 6 Months campaign win, our Senior Policy Adviser Daniel Vincent reflects on how the campaign got to this… 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