The ALLIANCE's Policy and Information Manager Andrew Strong reflects on a vital campaign for unpaid carers.
In 2004, the Murray Owen Carers Group in East Kilbride launched a petition which would, over a decade later, result in a change in the law.
Their campaign highlighted the plight of several thousand parents and family members across Scotland in their seventies, eighties and even nineties who had been the main carers for their sons, daughters, partners and relatives with learning disabilities.
Many of these people had cared, day in and day out, for over 40 years or more.
The least that older carers deserve after a lifetime in a caring role is the comfort that comes from knowing that plans are in place to make sure that their son or daughter will be well cared for when they are no longer there. But for many, no such provision had been made.
These are the first generation of people who have learning disabilities who are outliving their parents. But, as ENABLE Scotland’s older carers campaign has highlighted, the stark message from some carers was still that “I hope my son dies the day before I do”.
One practical solution, though not the only one, is that of emergency planning. This can involve making sure that all relevant information about the person they care for is recorded, and preferences noted, so that it can be accessed in the event of an emergency. It can be an important and practical way of offering the peace of mind many carers desperately seek.
So this week’s announcement by the First Minister that the Scottish Government intends to include discussions about emergency planning in all carers support plans is more than welcome – though long overdue. Nicola Sturgeon told this week’s Carers Parliament that this should be a fundamental part of the carer planning process – the type of support which had been called for in the petition 11 years previously.
The impact of such a change could be major. As a carer once told me: “Now I have completed an emergency plan I feel a sense of reassurance. I have a long-term plan for the care of my son if I was no longer able to care for him. I have also planned for crisis situations, say if I was in an accident. It’s good to know I have a plan for who would step in and keep a sense of normality.”
Caring can be a lifelong commitment. For all carers, such a reassurance about what will happen when they are no longer able to care is just a small price to ask.