Short Break Stories

Family Weekend

A story by Brittle Bone Society

Our project enabled 5 Scottish adults who have OI (Osteogenesis Imperfecta), to attend our Family Weekend Conference with their family carers and children if any.

The event was held in Manchester the weekend of 11th Sep 2015.

What Family Weekend did

Our Family Weekend Conference took place from 11th to 13th September in the Radisson Hotel at Manchester Airport. We promoted the grants available to Scottish Adults with Osteogenesis Imperfecta and carers through our newsletter, ezines, Scottish Support Group Facebook page. We also wrote to Scottish families informing them of the grant.

6 Scottish families applied to attend, however one was unable to attend due to a hospital visit. The grant was determined by a point system taking into account whether they had attended before, how far to travel and any other special circumstances. The weekend was attended by 152 people from all over the UK, Republic of Ireland and Europe.

As part of the weekend we run a mini conference for young people aged 11 to 15 called "Cool Bones", and facilitate a Creche for younger children. Adults were able to attend many presentations by leading healthcare professions (some of which can be viewed on YouTube and were live streamed for the first time), and meet with wheelchair suppliers to gain information. There was plenty time for individuals to talk with peers and have opportunities to have fun and take part in the pub quiz go to the gala ball and disco and watch the kids talent show.

One young man came to conference with his dad. His dad has recently taken over as his carer due to his mum recently passing away.

The young man told us "It amazes me that after so many years I still have so much to learn, I've come away from conference with new ideas and ways to keep up with my care and quality of life. The information I gained at conference has been invaluable as was being able to speak with the healthcare professionals. "

This young man also told us that he finds it difficult to speak up in group's, but coming to conference really made him feel like his opinion mattered and he was listened too.

His dad said " being able to talk to other parents who are carers and feeling like you are part of a bigger family is so special".

One lady told us: "1 to 1 Support is vital as is emotional support. Knowing you are not the only family with these problems means so much." This lady was so inspired by conference she asked if she could be more involved with the Scottish Support Group as a volunteer and assist in arranging more meetings.

She has since spoken at schools raising awareness of the condition and given emotional support to others by
One lady who came with her husband, and has recently had to give up work due to health issues has since gone on to hold a few fundraising events, been to Wheelchair Services to gain advice on the type of chair she should have. She has now ordered a Sports Chair and is attending a Wheelchair Tennis club, and we are in the process of funding a manual lightweight chair to allow her independence back.

Her husband is delighted she is more able to get out and about on her own, and they have also spoken to peers on gaining information for car adaptations.

What Brittle Bone Society has learned

We hoped to hold the 2015 Conference in Scotland which would have encouraged more Scottish families to attend. We however could not find a suitable accessible venue at a reasonable price and eventually chose a venue in Manchester. The families who did benefit from the grant however could not have afforded to attend without the financial support.
Top tips Brittle Bone Society's top tips for an organisation that wants to run a similar project
Tip 1:
There is a lot of planning involved in running a weekend event. Finding venues with enough accessible rooms is of vital importance to us.
Tip 2:
It is important to consult with members to ensure the event meets their needs.
Tip 3:
It is important to communicate closely with the Healthcare professionals to arrange suitable dates and interesting talks.

"The services are great for me it makes me feel better in myself and gives me something to look forward to every week. I couldn't do without it I would be a prisoner in my own home."

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