Compact in action: Alstrom Syndrome UK and the Department of Health

A tiny charity for sick children has used the Compact to secure its share of public funding.

The Compact can help the smallest of charities in their battles with large state bodies. Kay Parkinson set up Alstrom Syndrome UK a decade ago after her two children were diagnosed with the condition, which leads to childhood blindness and obesity because of insulin-resistant diabetes. It is extremely rare: fewer than 400 people worldwide are diagnosed with it.

The charity, of which Parkinson is the only full-time employee, set up the first database of UK families affected by the condition (there are 30) and raised money to establish specialist surgeries at Birmingham Children's Hospital and Torbay Hospital.

In April 2006, the agency formerly known as the National Specialist Commissioning Advisory Group, which oversees the commissioning of specialist health services in the UK, awarded each hospital's Alstrom clinic roughly £130,000. But the terms of the grants specified that the money could not be spent on voluntary organisations.

"We weren't happy," Parkinson says. "We collected the only UK database on Alstrom Syndrome, yet the hospitals were getting paid while I was expected to provide surgeries and clinics for free. We are delivering a public service: they can't do it without us - they haven't got the mechanism to bring in families."

Then Parkinson heard about the Compact. "The more I read about it, the more I thought that just about everything in the agreement was being ignored," she says. "I was amazed to find that no one at the NSCAG or at two hospitals that I spoke to knew about it."

She contacted the NCVO, and in January its Compact advocacy programme wrote to the NSCAG explaining that the grants had breached the Compact by failing to recognise the value of working in partnership with the voluntary sector.

A meeting followed in February. Parkinson then received a letter from the Department of Health offering a one-off payment of £46,000 and a pledge that her organisation could be included in future NSCAG funding applications. The charity and the hospitals have since submitted a joint £120,000 bid.

"I don't know how we would have managed this year without the Compact," Parkinson says.

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