The place to go if dying for food

Published on Saturday 1 May 2010 20:22

BETH Taylor has lost more than five stone in six months. John Thomson has almost halved his weight in five years. And Martyn McGovern has dropped 5lb in just a week.

All are resident at Clare House – Scotland's only residential home for people with the rare genetic disorder Prader-Willi Syndrome (PWS), which leads to excessive eating.

The house, on a quiet, leafy street in Dunblane, Stirlingshire, is home to nine adults with PWS, who receive help and support for the most troubling aspect of the condition – the constant desire to eat and the obsessive search for food.

Although not a fatal condition in itself, the chromosomal abnormality creates such a compulsion to eat that in some cases PWS adults die from obesity before they reach their forties or fifties.

Clare House manager Moyra Logue has a 17-year-old son with PWS. "People have died due to obesity," she said, during a tour of the 2.5 million project she campaigned for over three years to set up.

"The latest victim in Scotland was at just the end of last year," she added. "If you go by the statistics, we have quite a few children with PWS. Then you get to the adults and we have many in their twenties, lots in their thirties but if you go to the forties, there are not so many. You are probably talking about a handful.

"People don't die of PWS. They die of obesity."

Clare House opened last June after the Scottish Government agreed there was a need in Scotland. It is run by Gretton Homes, a private company.

Previously, Scottish adults with PWS needing residential care had to move to homes in Northamptonshire.

Glen Shannon, from Dumfries, was 18 when he went to live in Northamptonshire. Now 23, he has been back in Scotland for almost a year.

"I get to see my family more now," he said. "It was hard to be away from home for so long."

The budding singer, who has lost 10st since moving into residential care, recently went to Glasgow to audition for The X Factor. Despite not getting to perform for the judges, he was offered positive encouragement from the producers for his rendition of Dancing Queen.

"Next year I'm applying for Britain's Got Talent," he said, undeterred.

A calorie-controlled diet, set mealtimes and activities including walking, swimming and visits to the gym tackle the severe obesity, and related problems such as Type 2 diabetes, which residents may be suffering from when they first arrive.

Staff must also be vigilant. People with PWS can go to extreme lengths to get food – climbing through windows to escape carers to get to the shops or encouraging others to give them extra supplies.

Logue said: "They say people with PWS have an insatiable appetite, which isn't strictly true. Some of them can feel full up, but it is for a very short period of time. It could be five minutes and they are hungry again.

"So their brain is not telling them when they are full up and because they are hungry, they think about food a lot. They will seek food and they will be thinking about it. So they will do things to get food.

"We have to monitor every situation when they leave this house because if they are going shopping, they could shoplift and, therefore, they always require staff support."

Before coming to live at Clare House, Beth lived in sheltered housing in Ayrshire. But her weight continued to increase and, when she arrived in Dunblane last October, it had peaked at over 20st. She has since lost 5st 3lbs, and can enjoy her favourite hobby again.

"It's fantastic. I like horse riding and I can do that now," she said, standing in her spacious room with en-suite bathroom at Clare House.

But Beth and Glen are among the lucky ones who have secured funding – often after long battles – from their local authorities for a place at the home.

Logue said people who could benefit from the services of Clare House were being denied access because of council cutbacks and increasing budgetary pressures.

"An awful lot is dependent – and it shouldn't be – on which local authority a person comes under," she said.

In some cases, Logue added, local authorities had placed people with PWS in psychiatric units because of a lack of suitable care – even though they were suffering no mental health problems.

The cost of care at Clare House is around 2,000 a week, depending on the different needs of residents.

"The cost if they don't come could be their life," Logue said.

John Thomson, 34, from Oban, has dropped from over 22st to 12st 6lbs since receiving care first in Northamptonshire and now at Clare House.

He lives in one of the four self-contained flats at Clare House, giving him his own front door and a bit of extra independence. "It is better being closer to home. I like having my own flat and to be independent," he said.

Logue wants it known that dying from obesity is not the only option for those with PWS. With the proper help, their weight can be controlled and they live long and happy lives.

"People need to have that peace of mind that there is something here to help," she added.