Short Break Stories

Family Weekend

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.

One of the families from Scotland were very enthusiastic about the experience of coming to the BBS Conference and how much information they had been able to learn at the event. They had previously attended a conference where they learned about Dogs for the Disabled.

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."

One lady with severe OI who has not been able to attend a conference before . She finds it very difficult to travel far from her home in Glasgow. With the help of the grant she was able to fly directly from Glasgow to our Conference which was held at Heathrow. She is hoping to be able to attend meetings of the Scottish Volunteer Support Group

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"
A Scottish lady in her twenties with OI attended with her mum and found the experience inspiring. She told us "My experience at the conference was really positive. Thank you so much for giving us the opportunity to attend. Hearing from the experts who offer care and who are dedicated themselves and make it their lives work to look for cures, was quite humbling and also reassuring. I certainly learned lots of facts about the condition that allowed me to take on a different perspective in ways I couldn't have if I hadn't attended the conference.

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 learned

The 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.
Top tips Brittle Bone Society's top tips for an organisation that wants to run a similar project
Tip 1:
Plan events well in advance to ensure availability of healthcare professionals and to give time to select the most suitable venue
Tip 2:
Consult with service users to ensure that the event will meet their needs
Tip 3:
Work closely with healthcare professionals to plan talks and workshops that will meet the needs of the service users