Now that around one in eight people find themselves thrust into the role of carer for a loved one, saving the health and social care system in Scotland an estimated £10 billion each year, we need to answer the question "Who cares for the carers?" – especially when the caring stops.
There is generally no training given beforehand and very little on-the-job advice for people who may have had to give up work and sacrifice time with other family members to carry out this new full-time role. And there is no safety net or instruction manual when the job stops. The sense of social isolation can be deeply felt by people who find their whole existence thrown into question when they lose a loved one they have been caring for.
While the Scottish Government is addressing the question of funding and there are some good organisations for carers, more focus needs to be put on their health and wellbeing. They can lose out on income, pensions, health, friends, social opportunities and time to themselves. We will urge GPs to develop our Keep Well, Keep Caring mantra into a social prescription for couples coping with degenerative conditions.
It is time for us as a society to value the work done by carers and offer them the help they need before they become totally overwhelmed by the task they face. This is where Leuchie House provides a lifeline service. It is the only place in Scotland which offers respite breaks for people with long-term physical conditions and their families.
Leuchie House gives carers the time they need to recharge their batteries while their loved ones are being cared for in a beautiful country house setting, with the reassurance of 24-hour nursing care. There are also rooms for carers if they would rather stay and they are able to enjoy a break together.
We are running a Who Cares? fundraising appeal for Leuchie, an independent charity, based in East Lothian but available to people throughout Scotland. The appeal is fronted by one of our trustees, Ann Butterfield, whose powerful story highlights the challenges faced by carers and the need for quality respite care.
Ann, from Paisley, cared for her husband Jim who had primary progressive multiple sclerosis, an aggressive form of the condition with rapid degenerative deterioration, soon after the birth of their first son. They went on to have another son and the family took regular breaks at Leuchie over the years before Jim died in March last year.
Explaining the way her life changed after she became a carer to her husband, Ann said that without the right support, caring can have a devastating impact. When caring is insensitive and unsupported you can struggle to hold down a job, get a night's sleep, stay healthy and maintain your relationships with friends and family.
"We had three breaks a year. I would go with Jim to Leuchie for one of those breaks so we could enjoy quality time together, allowing Leuchie staff to look after Jim's care.
"The other times I knew I could leave Jim there and it gave me a chance to do something with the boys, so they didn't miss out. It made it easier to manage family life knowing that I had the breaks to look forward to. I would never have said I couldn't cope and have my husband put in a home, but I needed to know those breaks were coming up in order to carry on."
Ann's situation is by no means unique and it is vital that equal access is available to everyone who needs a quality break from the demands of full-time caring. Just because a family member cannot physically manage a mainstream holiday, there is no reason their carer should not enjoy some time to themselves – with the reassurance that their family member is having a break themselves.
If we want carers to continue their vital role, we must guarantee universal access to quality respite breaks.
These breaks are a social and economic necessity, not just a luxury.
A column for outside contributors. Contact: agenda@theherald.co.uk
Mairi O'Keefe is chief executive officer, Leuchie House.
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