Who is looking out for our growing arms of carers?

At Marie Curie we have been working to strengthen the Bill to support those caring for someone living with a terminal illness; by that we mean when someone has reached a point where their illness is likely to lead to their death. We’re pleased to say that the Bill now ensures that these new support plans will be fast-tracked for them. But there’s still more to do.

We know around 17 per cent of the Scottish adult population and four per cent of the Scottish child population (or 759,000 adults and 29,000 under 18-year-olds) are providing care and support every single day. These informal carers are still far too often forgotten and do not receive the good quality care and support they need to enable them to carry out their caring role.

With Scotland’s ageing demographic, more people living longer with multiple long-term conditions and health and social care services facing more demands, we will increasingly rely on carers to stay independent and live at home for as long as possible. This is one of the Scottish Government’s main aims for our health and wellbeing.

Too many people do not receive the support they need to make sure they are both willing and able to provide care to their loved ones. Many aren’t identified as carers, many don’t receive support when they are, many don’t have the right support and many aren’t supported when that caring role ends. Our research shows that 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. So they’re pretty important but who is supporting them?

Caring for someone at the end of life can be both physically and emotionally demanding, and is often accompanied by a carer struggling to come to terms with the pending loss of a loved one. With some conditions, it can be quite an unpredictable role and there’s often little certainty about how long it will last. Lives are put on hold, debts accumulated and people’s resilience and capacity to cope are stretched. So it’s important that they have the right support from the very beginning, throughout their caring role and once that role ends.

We’re pleased that the recently published Scottish Government’s strategic framework for action on palliative and end-of-life care specifically references carers and the support needed for carers of people living with a terminal illness. We’re also encouraged that, as part of the Scotland Bill, a number of benefits that will affect people living with a terminal illness and those caring for them will be devolved to Scotland. As this progresses, we’ll be working to ensure that our future welfare system works for people when and how they need it.

But there’s more to be done. We don’t think that the Carers (Scotland) Bill has enough powers to support those carers who finish their caring role, whether that is through changes in personal circumstances, changes in locations and type of care or if the person they’re caring for dies. Former carers tell us that they can sometimes feel abandoned by support services after they’ve stopped caring. They may be experiencing bereavement, debt and need help getting back to work and they may have unmet health needs of their own. We have been campaigning to have powers added to the Bill to make sure there is support in place for carers when their caring role ends. We hope we will be joined in supporting amendments that will provide additional bereavement support as well as giving support for the overall Bill.

Let’s make sure we get it right and properly support all of the 759,000 adult carers and 29,000 young carers in Scotland.

Susan Lowes is Marie Curie’s policy and public affairs manager in Scotland.