The Brittle Bone Society (BBS) is the only UK charity supporting people with the rare bone condition osteogenesis imperfecta (OI). As well as offering a free, confidential support service and signposting help on issues such as genetics, education, work and travel, the charity also fundraises for specialised wheelchairs that aren’t available on the NHS and can cost up to £16,000.
BBS member Mark Gardiner is soon to be a recipient of one of these specialised electric wheelchairs. “I get back pain from my wheelchair at the moment, but this new one will be much better because it will have a specialist seat which will be more comfortable. It will move up and down so it will be a lot easier for me to get in and out and it will have proper suspension.
“A couple of years ago the Brittle Bone Society gave me an electronic bed which is custom-made to my size and also moves and tilts. Both these pieces of equipment will help stop fractures because I will be less likely to fall off the bed or out of the wheelchair.
“The BBS has made a big difference to my health.”
Patricia Osborne, chief executive of the Dundee-based charity, says: “The Pilotlight approach – to see what is working and not working, what needs to change and the good parts that can be built on – was perfect for us.
“The one thing we knew we did well was fundraising for wheelchairs. But there were other areas where we felt we could improve, such as looking at patient empowerment so that our members could become more involved.
“Financially, as a small to medium-sized charity we didn’t have excess funds and we were reasonably reliant on legacy income which is precarious.”
Consequently, the Pilotlighters took a tough line when looking at the charity’s assets, says Patricia. “We had a charity shop that was underperforming quite dramatically. They asked us to look at it and, in the end, we decided to dispense with it because it would have required a significant investment to bring it up to spec.”
The Pilotlighters’ involvement has resulted in new projects, including CoolBones for children aged 11-15. It will allow younger people with OI to contribute to the charity’s newsletter and meet peers online and at the annual family conference. The project won second place in a UK-wide competition, and netted the BBS £15,000 to implement it. Again, this was in part due to the encouragement from the Pilotlighters to be more confident and ambitious, says Patricia.
The charity finished the Pilotlight process in January 2013. Patricia’s advice to other charities working with Pilotlight is to be open when going into the process. “There is no point in only taking the good parts of your story to the meetings, you have to take in everything because they need a true picture to be able to help you.”
Patricia’s Pilotlight team consisted of an individual member and three corporate members from Artemis, NHS Education for Scotland and Prudential.
John Warburton, managing director of retail life and pensions at Prudential’s UK business, says: “We reviewed their finances and identified that their financial position wasn’t as strong as they thought. They needed to take immediate action.
“We questioned whether the charity shop was the most effective way to raise funds. Selling it has given them more operating reserves and they are now looking at alternative retail outlets – probably online – to replace that revenue.“
John pointed out that they were missing a key source of revenue from members and the charity has now launched a membership and supporters’ plan. If all current members attract three supporters the charity could see income rise by £25,000 in one year.
John found that he learnt from the experience too: “I have been able to take some of the questioning skills I’ve picked up during the process back to my day job. And I’ve learnt a lot more about the third sector.
“One great thing about becoming a Pilotlighter is that it gives you a real sense of being able to offer something back into society.
“You gain from the experience as an individual and get a sense of achievement by supporting a charity in realising its ambitions.”
