A story by Brittle Bone Society
Our project enabled 5 Scottish adults, who have Osteogenesis Imperfecta (OI) , to attend our Family Weekend Conference, by covering the travel and accommodation costs for them, their family carers and their children if any. The event was held in London in August 2014.
What Family Weekend did
Our Conference August 22nd-24th at Park Inn Hotel, Heathrow Airport, London. Registration was available from April 2014. We promoted grants for Scottish adults with OI with their family carers, through our newsletter, website and social media and Facebook. In addition, we emailed Scottish families.
5 Scottish families applied - 3 of whom had never been to a BBS Conference before. The grant was determined by a points system taking into account whether they had attended before, travel involved and any special circumstances. The maximum grant was 75% of the total cost. The weekend was attended by 170 people from all over the UK, Republic of Ireland and Europe.
As part of the weekend event, we held a Cool Bones mini conference for ages 11-15 who either have OI or have a sibling with OI. There was a creche for children aged 0-10 years staffed by qualified child minding staff. Those who attended were able to attend presentations by the 10 leading NHS healthcare professionals and take part in a Rare Bone Question Time forum. There was an opportunity to learn about BBS Volunteer Support Groups which meet throughout the year, and hear about RUDY - an NIHR funded research project which aims to transform clinical care for participants through patient driven research.
Many people with OI are now taking part in RUDY. There was a Therapy Resource Stand manned by an Occupational Therapist and Physiotherapist and 3 wheelchair manufacturers (who paid a fee to attend, to exhibit their products). We ran a sports section offering accessible sports tasters. There were many opportunities for the people with OI and their carers to network and get to know other families including the informal Pub Quiz on the Friday evening and the Gala Dinner, volunteer awards ceremony and disco. The event provided an opportunity for all to families to relax.
Following this she applied to Dogs for the Disabled for an assistance dog and was approved. Conference 2014 was the first time she had attended an event with her assistance dog. The dog has made a huge difference to her life and self confidence. Since the Conference she has also been inspired to sign up for the RUDY study which is an NIHR funded research programme supported by the Brittle Bone Society.
Her husband/carer told us "We learned things, mostly about the onset of potential new treatments and how existing treatments for OI had been as a result of research into Osteoporosis. We also noted the RUDY project and my wife (who has OI) has agreed to participate. The conference confirmed how treatments and equipment vary throughout the UK. We especially noted that the Northern Ireland support group has been able to influence the criteria for wheelchairs and my wife is keen to contact her MSP about how the process is different in Scotland.
We have met some new families and will be keeping in touch with them; our son has made some new friends and is also keeping in touch with them, independently of us. We will continue to attend BBS events. A lot of people approached my wife asking about her dog (a Dogs for the Disabled dog): what he does for her and how she got him and she felt that a lot more people spoke to her this year because of the dog."
She told us "I found the conference very helpful. The talks went into detail about the condition and kept us up to date with treatment. It was a really nice feeling being in the company of other people with OI, particularly as I get older and becoming slower and not able to do what I used to be able to do. You realise you are not alone and other people have the same fears. Having a rare disease can be isolating as everyday living is so much different from others who don't have the condition. I have befriended a couple of people on Facebook and I would like to attend other events if I am able to get there"
I found meeting the other members from Europe fascinating , hearing their views and experiences and finding out how they approach OI, something I would never have experienced if I hadn't attended the conference. I also made some new friends and was able to meet up with some that I'd only spoken to by phone. I really opened up and shared experiences in a way that I have never explored before and I know others felt the same.
I have friends outside the OI community who although try their best to understand and do sympathise, they really don't know what it's like to walk in our shoes. Explanations constantly needed, also, people can be very opinionated. Therefore, to walk into a room and know that every individual there shares a common life experience like yourself (or your child) is so unique.
To be able meet up with young adults who have made a success of their lives and leading by example is so inspiring... I wish I had been involved long before now and hope others don't leave it as late as I did, a whole new world has been opened up which has given me a sense of well being and I cannot thank The Brittle Bone Society and their staff enough".
What Brittle Bone Society has learnedThe five adults who benefited from the grants would not have been able to afford to come to Conference without the grant they received - the grants have been vital to the work we do with adults with OI in Scotland
It is often very difficult for people with OI to travel long distances. However as our Conference was held at Heathrow Airport, families were able to fly which meant a much shorter travelling time. This meant they were less fatigued when they arrived and more able to enjoy and take an active part in the weekend.
We worked very hard to let all our Scottish members know about the grants and directly contacted people who we thought were unlikely to initially ask for help. We also made full use of Social media.