Creating a social security fit for those living with a terminal illness

Richard Meade will be giving evidence to the Scottish Parliament’s Welfare Reform Committee on Tuesday 15 September on the Future of Social Security in Scotland. View Marie Curie’s written evidence to the committee. In this blog Richard talks about how important it is that a safety net exists for people living with a terminal illness.

Every new devolved welfare power gives the Scottish Parliament and the Government greater responsibility over Scotland’s most vulnerable people. For someone living with a terminal illness, and their family, there are few, if any, more vulnerable points in their life.

Facing the prospect of limited time left can be daunting, but ensuring you have the means and support to make the most of that time, while managing health and care needs can be truly terrifying. Falling into financial trouble, debt and even poverty is a very realistic possibility. This is where the welfare state must step in.

As Scotland receives direct control over a number of social security benefits and starts to consider how to make these work there are a number of principles it must embed. For people living with a terminal illness time is precious, so quick and easy access to financial support is essential. Many people living with a terminal illness are currently not getting the benefits that they are entitled to or have to wait an unacceptable length of time before receiving them.

Many people with a terminal illness want to continue to work, particularly early on in their diagnosis. However, they should never be compelled to work. The social security system that emerges in Scotland should support this.

Carers are the single most important factor in ensuring that a person at the end of life can be cared for and die at home. However, carers of people living with a terminal illness do not get the support they need. With Carer’s Allowance due to be devolved to Scotland there is an opportunity to ensure that it works better for carers.

Currently carers of people living with a terminal illness do not get their benefits fast tracked in the same way as the person with the terminal illness does. This can lead to long waits for carers to get the financial support they need at a time of great need. Many carers will have to give up work to support their loved ones, and this can mean a significant drop in household income. Many carers of people living with a terminal illness are not getting their benefits, so more needs to be done to identify them and ensure they get the support they are entitled to.

Underpinning all of this there needs to be a system that is clear and easy to navigate so that all applicants know what might be available to them and how to apply. The application process must be quick, easy and non-intrusive. The system and its administrators must be compassionate and sensitive to the needs of someone living with a terminal illness and their carers.

The future delivery of social security in Scotland is an opportunity to ensure that our welfare system lives up to the ambition of its founders of protecting the economic and social wellbeing of all its citizens.