Many changes were made to the Bill by the Committee of MSPs tasked with leading on its development including an amendment to increase the definition of terminal illness from its current UK definition of 6 months to 2 years. This extension enables more terminally ill people to receive their benefits quicker and without undignified and unnecessary face-to-face assessments to check eligibility.
However, just before the Bill is due to be passed, the Scottish Government has introduced a counter amendment to have this overturned, reverting back to the 6-month definition of terminal illness, with a list of potentially exempt conditions highlighted in regulations. If passed, this would cause many terminally ill people to lose out.
This became the focus of First Minister’s Questions today when former Scottish Labour leader, Kezia Dugdale, pressed the first minister on changes to the legislation which would see the terminal illness definition remain at six months.
In response, the First Minister highlighted the second part of the amendment which potentially allows for a list of other terminal conditions which would be exempt from the 6-month rule.
However, this would feature in regulations not the Act, offering little protection for terminally ill people as any future changes would not need to go before Parliament. In addition, charities fear that this could lead to a two tier system where people with different conditions, but a similar prognosis, could be treated differently. Such a list would also offer little room for clinical judgement.
The Scottish Parliament will vote on the Bill on 25th April and Marie Curie and MND Scotland are urging MSPs to reject this amendment. The charities are supported in this call by 20 other Scottish charities and 57 clinical practitioners with an interest in terminal illness.
Background - Social Security and terminal illness
In 2012, the UK coalition government introduced its Welfare Reform Act. This Act requires terminally ill people to prove they have 6 months or less to live in order to receive benefits under a ‘special rules’ system, which includes ‘fast tracking’ the claimant. Since then, many terminally ill people have faced serious obstacles when trying to access urgently needed benefits.
Currently, to be fast tracked for benefits, terminally ill people must have a Department for Work and Pensions (DWP) DS1500 form completed by their clinician, who must confirm s/he has just 6 months or less to live. However, 6 months life expectancy has no clinical meaning in most terminal illnesses. The system only works for people with terminal cancer, because cancer has a clearly defined disease trajectory. As a result, many terminally ill people, including those with Motor Neurone Disease (MND), heart failure, dementia, and chronic obstructive pulmonary disease (COPD) fail to access the benefits under ‘special rules’, including the fast track system.
The change made to the Bill by the Scottish Parliament’s Social Security Committee to extend the definition of terminal illness from 6 months to 2 years enables many more terminally ill people to access their benefits quicker and avoid needless face-to-face assessments. It is disappointing that the Scottish Government has lodged a counter amendment to revert back to the 6 month definition of terminal illness. The Scottish Government has publicly committed to fast tracking benefits for terminally ill people. We would hope that Scotland can improve on the UK system that fails so many people with terminal conditions other than cancer.
Craig Stockton, CEO of MND Scotland, said:
“We believe that all people with MND should be fast-tracked for benefits. Scotland has the chance to remove a major source of worry and distress for those who should be concentrating on make the most of the time they have left. We have a chance to show that we are a caring society. By extending the definition of terminal illness to 2 years rather than 6 months this can happen. If we don’t, many more people with terminal illnesses like MND will lose out on the benefits they need, when they need them.”
Richard Meade, Head of Policy and Public Affairs at Marie Curie Scotland, said:
“We have always said that we would like to see a definition of terminal illness based purely on clinical judgement. Last 6 months of life is not good enough as it means far too many people miss out. Extending the definition to last 2 years gives more terminally ill people the chance to the get the benefits they need quickly and in a dignified way. For the social security system to work we need a system that ensures that terminally ill people who need help get it as fast and as easily as possible.”
We need your help to ensure that MSPs support a fairer and more dignified benefits system for people with MND and other terminal illnesses. Support us in a few easy steps at: http://mndscotland.takeaction.org.uk/lobby/FairerBenefitsforMND
Find out how we can support you if you are affected by MND
Help us support people affected by MND and fund vital research
Become a volunteer, join a campaign or share your experience
We are funding research that is taking us a step closer to a cure