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Let's Get Benefits Right

We successfully campaigned for big changes in the benefits system as powers were devolved to Scotland.

Between autumn 2016 and spring 2018 MND Scotland successfully lobbied MSPs in the Scottish Parliament to get benefits right for people with MND in Scotland.

On 25th April 2018, the Scottish Parliament took a historic vote to pass the Social Security (Scotland) Bill. This includes a much fairer system for people with MND who need to access those benefits which have been devolved to the Scottish Parliament.

The then UK-wide system only fast-tracked terminally ill people, including those with MND, for benefits if their doctor or nurse completed a form to state they had just 6 months or less to live. This meant that many people with MND had to wait months for their benefits and undergo face-to-face assessments.

Following the passage of the Scotland Act (2016), it was agreed that power over 11 social security benefits including Personal Independence Payment (PIP), Disability Living Allowance, Attendance Allowance and Carers Allowance should be devolved to Scotland.

What we did

The Scottish Government began seeking views as to what these benefits should look like when they are delivered in Scotland.

One question the Scottish Government asked was whether or not some people should be ‘automatically entitled’ to benefits. This could mean that people with certain conditions would receive benefits without having to go through a standard application or assessment.

We sent a survey to people with MND asking for opinions on some areas of the disability benefits. We asked questions on issues such as:

  • communicating with the agency
  • flexibility of payment
  • assessment processes
  • length of awards

The respondents to this survey were overwhelmingly in favour of automatic entitlement, quick and easy access to benefits and lifetime awards for people with MND.

Therefore, we decided that the key ‘asks’ of our campaign would be to:

  • Fast-track people for benefits
  • End needless reassessments
  • Remove the flawed 6-month time definition for terminal illness

What happened next?

We launched an initial call to action - asking people to email their MSPs in support of our campaign.

Over 4,500 emails were sent and our social media reached over a million people. Our campaign was mentioned in Parliament by Mark Griffin MSP and by Christina McKelvie MSP, who also wrote to the Scottish Government in support of our campaign.

The Minister for Social Security responded in Parliament by thanking MND Scotland and our supporters for bringing this issue to their attention.

As the Social Security (Scotland) Bill worked its way through the Scottish Parliament’s Social Security Committee, MND Scotland continued to offer advice and campaign for positive change for people with MND in Scotland.

In late 2017 we decided to join together with Marie Curie Scotland to help ensure that a fairer system for all those with terminal illness in Scotland was delivered. Together, we lobbied the Scottish Government, MSPs, and civil servants over a period of many months.

In April 2018 we launched a joint campaign for supporters to engage with their own MSPs explaining why a fairer system is essential. Our dedicated MND Scotland supporters sent a further 3,700 emails to their MSPs. We also secured press coverage in the Times and on BBC News in which people with MND told their personal story about living with the illness and the problems they faced with the benefits system.

The Times article included a ‘letter to editor’ signed by 57 specialist clinicians supporting our call for a fairer system. The issue was also raised by Kezia Dugdale MSP in the Scottish Parliament.

The result

We were delighted when the Scottish Government and all MSPs agreed to a Scottish social security system that met all of the goals of our campaign.

The Scottish Government agreed that the new system should have no reference to life expectancy. Instead, it will be down to the clinical judgement of a person’s own doctor or nurse. This would mean that people with MND would be fast-tracked for benefits, receive them at the higher rate and without face-to-face assessment.

In addition, a proposal for reassessing terminally people for benefits like PIP was dismissed by MSPs earlier in the legislative process, meaning people with MND should be awarded these benefits for life.

The Social Security (Scotland) Bill was passed by a unanimous vote by MSPs in the Scottish Parliament on Wednesday 25th April 2018.

We would like to thank our partners Marie Curie, the many MSPs who worked tirelessly to support our cause, and finally our amazing MND Scotland supporters who helped us achieve this landmark result for all those affected by the illness.

We were thrilled that our Policy and Campaigns team were nominated for three prestigious awards, with colleagues at Marie Curie Scotland, for their joint work on this campaign. They took home the awards for 'Best Campaign in Scotland' at the PRCA Public Affairs Awards 2018 and for 'Campaigners of the Year' at the Herald Society Awards 2018. You can read the full story here.

What now?

As of summer 2018, Social Security Scotland began to deliver Carers’ Allowance payments to people in Scotland, with the remaining benefits being phased-in thereafter.

If you’d like to get in touch with us about this campaign, please get in touch with us at policy@mndscotland.org.uk or call us on 0141 332 3903.

quote marks

“Together with Marie Curie we have always called for a clinical judgement to be made, when defining a terminal illness for Scotland’s social security system. We are thrilled that the Scottish Government and MSPs have taken action to ensure a fairer system is put in place for those with a terminal illness. When the Bill comes into effect it will make a real difference to people affected by MND in Scotland allowing them to be fast tracked for benefits and removing some of the worry and distress that they currently face.”

Craig Stockton | MND Scotland Chief Executive

Craig Stockton | MND Scotland Chief Executive

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