Motor Neurone Disease Association Manifesto
1: Accessible homes: We need a major change in the way adaptations are provided in the home for people with MND. Too many are living in unsuitable and unsafe housing. We are asking local authorities to remove the red tape and fast track assessments for people with MND for these adaptations; as well as for
Read More1: Accessible homes: We need a major change in the way adaptations are provided in the
home for people with MND. Too many are living in unsuitable and unsafe housing. We
are asking local authorities to remove the red tape and fast track assessments for people
with MND for these adaptations; as well as for the next government to consult on
increasing the upper limit of a Disabled Facilities Grant.
2: Access to treatments: The next parliament will be a critical period for MND research,
with unprecedented levels of research activity to develop new diseasemodifying and life-
extending drugs for MND. Now is the time for sustained investment and support to bring
these drugs to those who need them.
3: Improved cost of living support: People with MND have been hit disproportionately hard
by the cost of living crisis, especially regarding energy bills. We are asking the next
government for targeted support to help people in the next parliament, and a sustainable,
long-term solution to the energy crisis such as an energy social tariff.
4: Sustainable social care: We need the next government to provide a sustainable social
care funding settlement with a clear plan to address workforce shortages to ensure the
sector can fully support people with MND. Long-delayed measures to stop people
incurring catastrophic care costs must now be introduced.
5: Support MND carers: Unpaid carers are the backbone of support for people with MND.
The financial support they receive does not reflect the contribution they make and too
many are excluded from support at all. We are calling on the next government for a full
review of the support currently available to unpaid carers
