As a result of our joint campaign ‘Social Security in Scotland – a fair definition of terminal illness’ people living with a terminal illness in Scotland will no longer have to prove how long they have left to live to access financial support, for those benefits which are being devolved to Scotland under the Social Security (Scotland) Act.
Currently, under the UK system, people with MND have to prove they have just 6 months left to live to be fast-tracked and to claim the maximum level of benefit. This “6-month rule” is a big problem for people with MND because it is virtually impossible for them to prove that they only have 6 months left to live. This has resulted in many people with MND not receiving the financial support they need quickly enough.
People with MND must also go through a stressful and unnecessary reassessment process to keep their benefits, even when there is no chance that their condition could improve.
Under the Social Security (Scotland) Act, some benefits such as Personal Independence Payments (PIP) are being devolved to Scotland. PIP is a benefit which helps with the cost of living with long-term disabilities.
We campaigned hard with Marie Curie to successfully remove this “6-month rule” from the new Scottish Social Security system being set up. This means from 2020, when the new powers are expected to come into effect in Scotland, people with terminal illnesses will be able to access the full amount of financial support quickly and more easily.
Following our campaign, needless assessments and reassessments will also be scrapped for benefits administered from Scotland. MND Scotland and Marie Curie will continue to work with the Scottish Government to ensure the new rules work in practice.
Some benefits accessed by people with MND in Scotland e.g. Employment Support Allowance and Universal Credit, will continue to be delivered by the UK Department for Work and Pensions (DWP). We are, therefore, working with UK partners to try to persuade the UK Government to follow Scotland’s lead and scrap the ‘6-month rule’ for all benefits.
MND Scotland's Head of Policy & Campaigns, Susan Webster (third from left) and Policy Officer, Colette McDiarmid (second from right) were at the event to pick up the award, with Richard Meade and Susan Lowes from Marie Curie Scotland.
Susan Webster, MND Scotland’s Head of Policy & Campaigns, said: “We’re so proud to take home the Herald Society Award for Campaigners of the Year with our campaign partners at Marie Curie.
“Far too many people with MND currently fail to be fast-tracked for benefits they and their families urgently need. The key thing preventing them is the ‘6-month rule’ and accessing the necessary DWP form. Scotland’s new social security system is to be based on fairness, dignity and respect and we believed that including the 6 month rule in this legislation, would be failing people with MND and other terminal illnesses.
"We were delighted when the Scottish Government agreed with us and ditched the 6-month rule in favour of a new definition of terminal illness based on clinical judgement.
“From 2020, people with MND should be able to access benefits like PIP quicker, at the higher amount, with no need for future reassessments. This means that their families should also access benefits like Carers Allowance quicker too.
“I would like to thank the MSPs who backed this campaign and to give a huge thank you to our supporters who got behind our campaign and sent hundreds of emails to their MSPs. We wouldn’t have been able to secure this change without your support.”
This campaign has also been shortlisted for the ‘Policy Development Award’ at the Scottish Public Affairs Awards and for ‘Best Campaign in Scotland’ at the Public Affairs Awards.
Susan Webster | Head of Policy & Campaigns