There was a time when Mark Hyland’s trips to respite care were something to be endured, not enjoyed.
The 46-year-old, who has Down’s Syndrome, lives in Willowbrae with his mother, Aileen, 84, who is his full-time carer.
Widowed 17 years ago, she is in poor health, so the short breaks when Mark went to Glenallan respite home in The Inch gave her a vital chance to recharge her batteries.
But she recalls: “He never wanted to go for respite. He did eventually, but he only went to please me. Every six weeks, he would go for a couple of nights.”
Thanks to a pioneering scheme being rolled out by the city council, Mark’s time away from his mother is now a source of excitement and fulfilment.
BreakAway gives families a choice about how to spend their respite time, rather than allocating them a fixed number of nights at a respite centre. Users are allocated a budget and can spend it on whatever activity they choose, from holidays to local social events. They can also pool their budgets with others, cutting costs by sharing a support worker, accommodation or transport.
So far, Mark has taken holidays in Barcelona and Blackpool, been to gigs including Lady Gaga and The Saturdays, and has a thriving social life.
His trip to Barcelona was a group holiday with others from Edinburgh, organised by Sparkle Leisure, which specialises in supported travel.
Aileen says: “They had a great time. Barcelona was a whole adventure for them, they had two carers and four of them, and they went by car to Newcastle, and flew from Newcastle to Barcelona.
“It’s broadened his horizons immensely, all the world’s his oyster. I feel he’s learning so much from it.
“It’s so much nicer than just going to Glenallan. I have the greatest respect for them, but it just wasn’t for him.”
Mark agrees. He says: “Glenallan House was OK but I don’t go there now. I’m on the BreakAway project. I’ve been away to Barcelona, we stayed in a hotel, had nice entertainment and I bought a football strip with Messi on it.
“In Blackpool the weather was terrible but we had fun. The best thing was going to Madame Tussauds. I’ve been to Liverpool with a friend and I went to Anfield.”
It’s not just Mark that has benefited from the change. Aileen says: “Being a parent, you worry all the time, but I just want him to be having some fun and he is, he’s thoroughly enjoying himself.”
BreakAway is not just about socialising, though. It also enabled Aileen to “buy” extra help at home recently, bringing in a support worker to help with early mornings when she was unwell.
The scheme is administered by co-ordinator Vicky Nicolson, who says: “Traditionally respite’s been defined as being nights away from home in a respite facility. When we did some consultation, we established the carers felt respite could take different forms.
“It could be an afternoon, an evening, that would take away from their caring responsibilities, perhaps going into town for some shopping, or being able to go for lunch with their husband.
“It can really be anything as long as it meets the need.”
Grant Abrahams, 20, from Carrick Knowe, who has autism, has been using the scheme to take regular breaks from his family on a Saturday afternoon, which are expanding his social horizons.
His mother, Margaret, says: “We just used to get some respite at South Gyle respite unit, so Grant would go along there and spend the night about once a month. He didn’t particularly enjoy it, although we still keep him going maybe every couple of months – just to keep him familiar with staying elsewhere.”
Grant goes out with a support worker from the charity Autism Initiatives to a whole range of activities.
Margaret says: “It’s been really good, he’s getting away from mum and dad. He’s been going swimming, he’s been climbing down at Alien Rock 2. Autism Initiatives have got a place at the Hermitage with a 12-hole golf course and a cafe, and he’s been going up there to bake cakes and things in the cafe – lots of different things.
“It’s been good for us, especially at this time of the year because we can get off to the shops without taking Grant round with us and it’s just nice to spend some time together.”
Colin Stewart from Clermiston has also found his world expanding as a result of the scheme, which he has used to go on holidays – including an activity holiday in Kielder – and to visit the regular discos Sparkle Leisure holds in Edinburgh.
His mother June says her son had grown bored of the respite care provided at Glenallan, but has been thriving since joining BreakAway. “He’s 42, but you can’t really let him go up town on his own to pubs so this works well – he’s got a better social life than my husband and I.
“When you have learning difficulties, it’s difficult to make friends and this group he went to Kielder and Blackpool with are all about the same age and all like the same things. They like bowling and going to the pub. He really does enjoy it and it’s taken such a pressure off.”
Vicky administers the individual accounts of BreakAway users, making sure their money lasts all year and helping them choose their trips, to make sure it doesn’t become yet another chore for carers.
She says: “A lot of people enjoy their experiences with respite care, but the people that come to this project come because respite wasn’t working for them – maybe they’ve been doing it too long and it’s getting too boring, or whatever.
“So in lieu of that respite, it gets translated into a budget. My role is planning and helping people to manage their money and just being a point of contact for families and individuals.”
Mark was one of those to join the scheme during its pilot phase, and after that it was launched formally in January 2011. This year, around ten people have signed up, and there are plans to expand that number to 25 during 2012.
After that, Vicky says, anything’s possible.
It’s a valuable and much-needed service
The BreakAway project has been introduced as part of a wider move towards giving people more control over their own care. In October, the Scottish Government completed consultation on its proposal for the Self Directed Support (Scotland) Bill, a piece of legislation that would oblige local authorities to offer choice and control to people receiving care.
Within Edinburgh, the shape of respite care is already changing. The move towards more flexible care for adults with learning disabilities saw the Granton Road Respite Service close its doors in October, with the £250,000 annual cost of running the centre to be ploughed into other respite services.
City health and social care leader, Councillor Paul Edie, says: “Short breaks provide a valuable and much-needed service to people across the city.”