Mairi O'Keefe: Respite care essential but funding is lacking

Mairi OKeefe at Leuchie House, where they offer the sort of short respite care breaks that can make life for a full-time carer just that little bit easier. Picture: David Anderson

Earlier this year, the much anticipated Carers’ (Scotland) Bill was passed by the Scottish Parliament. As the new parliamentary session gets under way, work will begin to enact the bill and enshrine in law for the first time essential new rights and entitlements for carers.

With nearly 760,000 unpaid carers across Scotland, it is essential that this landmark piece of legislation gets the focus and the resources it deserves.

The unpaid carer network saves the Scottish economy an estimated £10.3 billion – a staggering figure, similar to the cost of providing NHS services in Scotland.

Yet daily life can be a real struggle for many carers. Financial worries, debt, trying to juggle caring with work, are all major concerns. What’s more, eight in ten carers say their health is worse as a result of caring. The 24/7 demands of the caring role can leave many at breaking point.

A welcome development then is that the bill has highlighted the vital role short respite breaks play in alleviating the difficulties carers face and in improving their health and wellbeing.

As a national respite centre, at Leuchie House we see on a daily basis the enormous benefits that a respite break can bring to both carers and those they care for. For our guests, who are all living with a long term health condition such as multiple sclerosis or Parkinson’s, we see their wellbeing improve and their confidence return, before they leave us feeling better able to cope again.

For their carers – usually a partner or family member – whether they come to Leuchie too or take time out on their own, it’s a chance to get a proper break from the demands and stresses of a full-time caring role.

Respite breaks also have much longer term benefits too. While they’re with us, we assess our guests’ physical, emotional and mental wellbeing so we can take action where needed. Being able to work with our guests over the full length of their break – most people stay at Leuchie for 11 nights – puts us in a unique position to fully assess their needs. Last year at Leuchie, we made just under 700 anticipatory and preventative referrals to community health practitioners, avoiding the need for more formal or acute services, reducing health costs and improving our guests’ quality of life.

It’s not just those of us involved with Leuchie House who believe in the value of respite breaks. Across the health and social care sector, as more emphasis is put on care at home, short breaks are widely regarded as essential to maintaining the health and wellbeing of people, and their carers, living with long-term physical conditions. With the number of people in both categories growing year on year, the need for greater access to, and funding for, short respite breaks is critical.

Under the new law, local authorities will have a duty to produce information for carers about short break services available to them.

Yet there are already concerns from many of Scotland’s main carers’ organisations that this doesn’t go far enough, nor are there sufficient resources available to enable people to have the breaks they need.

There are already marked differences across the country in the availability of short breaks, with very limited access to funding in some areas.

At Leuchie, we work with 26 of Scotland’s 32 local authorities. This gives us a clear insight into just how widely support differs from postcode to postcode. Some of our guests receive recurring support, allowing them to have two or three short breaks at Leuchie House each year – an essential lifeline for them and those who care for them. For others however, in different parts of Scotland, support is very limited and for some, non-existent. The added stress to carers, already struggling with the demands of their caring role, of having to navigate complex funding systems and fight for help is considerable.

This lack of a unified national approach is an ongoing concern, even with the new law. An amendment to introduce national rather than local eligibility criteria for carer support was defeated at the final stage of the bill. When it comes in to force in 2017, each of Scotland’s 32 local authorities will have a duty to produce a local carers’ strategy. Without nationally-applied criteria, we are in danger of ending up with 32 different systems and the continuation of huge variations across the country.

The need for short respite breaks from people with long-term conditions across Scotland has never been greater. At Leuchie House, we could do even more to ensure that as many people as possible can benefit from respite care. The most significant barrier, however, continues to be the availability of local authority funding for people to be able to access our service. There is no greater frustration for my team and me than when we have empty guest bedrooms at Leuchie, knowing there are so many people who could benefit greatly from being here. It is estimated that there will be one million carers looking after disabled and frail people in Scotland by 2037. If the Carers’ Bill is to be effective in ensuring they get the support they need, a simple, unified system for determining the criteria for support and allocating adequate resources needs to be put in place, backed by a clear procurement process. Without this, the preventative aims of the bill risk being seriously undermined.

This is a fantastic opportunity to make sure unpaid carers get the support they really need. Let’s make sure we grasp it with both hands.

• Mairi O’Keefe is Leuchie House’s CEO