The Scottish Government has started off in the right way, putting the principle of dignity and respect at the heart of its proposed system. It now needs to make sure that, in practice, it delivers on the promise of that principle.
With current financial pressures, there are concerns that benefits which are due to be devolved will merely be tinkered with to make them a little bit fairer, a little bit more generous and a little bit more accessible. That’s not going to be good enough and it is likely that it won’t meet the needs and outcomes of the people who we care for at Marie Curie.
People often tell us that they are struggling to keep things together when they are dependent on benefits and they feel that their dignity is affected as a result.
For many, it isn’t just about the money, the timing is also crucial. Some people are given a terminal diagnosis and may be told they have six months to live.
At present, fast-tracked benefits for someone with a terminal illness can take anywhere between two weeks and two months to be paid into a recipient’s bank account.
Nearly everyone with a terminal illness will give up work as their illness progresses. If they are fortunate to have a family member looking after them, then it is likely that they will give up work too, or at least reduce their hours.
The impact of all this can lead to a sudden and dramatic loss of income for the household and a very real risk of pushing the family into poverty.
A two-month wait can mean a third of your remaining life expectancy if you’re in this position. Waiting this long for benefits is not only unfair, but can be devastating for families who may not be able to bridge the gap with other financial resources.
You can only apply for Carers Allowance once the person you are caring for has received their benefits, meaning another delay.
This is both difficult to manage and to deal with when you’re trying to make the most of the time you have left.
People who are living with a terminal illness have a right to as high a quality of life as is possible in the time they have left. Financial stability plays a crucial part in making this happen.
This is where the Scottish Government’s social security system and supporting benefits must raise their game to meet that particular challenge.
The promises made of a system of fast tracking for those who are terminally ill is great news, but it must be a genuine fast track, and by that I mean days, not weeks or months. We believe that there is room for the Scottish Government to go further.
There needs to be a process to bridge the gap between an application for benefits and receipt of them for those in urgent need of financial help. We are calling for a crisis grant to be made available straight away for those people who are diagnosed with a terminal illness.
This would ease any immediate financial pressures, and associated stresses faced by families living with a terminal illness and allow them to focus on what is most important to them.
The Scottish Government has committed to giving carers an uplift in their Carers Allowance to the level of Job Seekers Allowance but many of us are not convinced this is enough to support carers, especially those in long term caring roles who cannot work, perhaps for years.
We need to have an honest conversation about how we see the role of carers in society and then build a social security system which will support them properly to do that caring role.
There are clearly difficult decisions ahead for the Scottish Government and Scottish Parliament to make as they consider the details of the Social Security Bill over the coming months.
We would urge politicians to be brave and to make decisions that will ensure that everyone, especially the most vulnerable in our society, feel the dignity and respect that they are currently being promised.
Richard Meade is Marie Curie’s head of policy and public affairs, Scotland, www.mariecurie.org.uk/change