Joan McAlpine: Let's take care to support those who help others

ONE OF the most surprising and pleasing - aspects of the Scottish Parliament is the common ground between MSPs of different parties. There is more that unites us than the theatrical scenes from the chamber sometimes suggest.

This is Carers Week, and if ever a subject ought to cross party lines, it is this one. A number of carers and their families are coming to meet new MSPs in Holyrood on Thursday, and the stories they have to tell are humbling.

For example Sandra Webster is a single parent form Paisley who, with the help of her teenage daughter, cares for two autistic sons, one of whom also has a genetic disorder resulting in chronic renal failure. Another is Clare Lally from West Dumbartonshire, a young mother of four year old twins. One, Holly, is a typical lively pre-schooler, the other, Katie, is quadraplegic, must be fed through a tube and is at constant risk of choking. Not only must these families care for their disabled children, they must try, somehow, to keep life as normal as possible for their siblings.

It's odd that until relatively recently, few people defined themselves as carers. It was just something they did, often in isolation. The idea of a movement for carers, bringing together people of different ages and backgrounds, dealing with diverse disabilities and illnesses, was a long way off.

Carers cover a vast human landscape of experience: the pensioner looking after a partner with dementia; the elderly parents who cope with a disabled adult son or daughter despite their own ill-health; the mother or father who is forced to give up work to look after a child with profound needs; the school pupil who rises early and rushes home to support a parent with a debilitating condition such as MS.

But though each individual and family experience is unique, there are so many shared difficulties. So defining themselves as a group makes perfect sense. They are stronger together. When Princess Anne was inspired to create the Princess Royal Trust for Carers back in 1991, people caring at home for family members or friends with disabilities and chronic illnesses were scarcely recognised. What a difference 20 years makes. Carers are now, quite rightly, one of the most powerful lobby groups in the country.

The charity Carers Scotland and the University of Leeds, recently completed research that showed the value of unpaid care saved the NHS 10.3 billion every year. That is the equivalent of 28 million every single day. The figure has been rising sharply - there are now 650,000 carers in Scotland. In part this will be due to the ageing population.Modern medicine and nursing care also means that severely disabled children are more likely to survive infancy, and life expectancy is improving all the time. This is a cause for celebration. However it does mean that there are more vulnerable people requiring support in our communities.

The move away from institutionalised care ought to improve the quality of life for those affected - but it also saves money by replacing it with goodwill. One in 8 people in Scotland care for ill or disabled loved ones that would otherwise cost the state 18 an hour. So a carer who devotes 35 hours a week saves on average more than 32,000 a year.

Of course putting such a crude monetary value on the cost of care will be anathema to those who do it willingly. For them, the alternative is unthinkable. And they are correct, the care provided by family members is often of a higher standard than anything that can be bought.

But the fact that caring is a free choice does not make it an easy choice. It involves considerable sacrifice, especially in a modern age of opportunity and choice. These days families are smaller and more mobile - so, in the case of an elderly relative, the day-to-day responsibility can fall disproportionately on one daughter, son, sister or brother. Likewise, parents of a disabled child might not have the support network provided by large extended families in the past.

Needless to say, eight in every ten Scottish carers are concerned about the Westminster Coalition's cuts. This is particularly concerning when you learn that most already feel they have been financially damaged since taking on their caring role. The stress affects their own health. Astoundingly, almost half of all the carers in Scotland themselves struggle with a disability or serious illness.

Welfare remains a firmly reserved power, though surveys show that Scots believe it should be devolved along with tax raising and job-creating powers. The cuts to councils in Scotland are half those imposed on local authorities in England … but they remain painful, despite the efforts to introduce a social wage that reduces family budgets by, say, freezing council tax and abolishing prescription charges. Already respite care, a lifeline for caring families, is being cut and at least one organisation that offers respite is proposing a pay cut for workers.

While the carers who lobby parliament in Scotland this week will certainly get a sympathetic reception across the political spectrum, they do so as sweeping welfare reforms are debated hundreds of miles away in Westminster. Scotland has no say in the reforms, the impact of which is feared by carers whose family benefit arrangements can be complex. If the attempt to simplify welfare is driven by cost, as appears to be the case, the most vulnerable will suffer most. Already there is considerable anxiety about the reassessment process - every time it happens, there is insecurity and possible disruption in payments. People struggling to survive on a fixed income don't need that additional worry.These welfare cuts were not of our making, and only full political and economic control being transferred to Scotland can stop them. Short of that, if cuts are coming, it is incumbent on everyone, at every level of government, to prioritise the most vulnerable - and their selfless carers.