Our next Children and Families Event is at Landmark Forest Adventure Park in Carrbridge, on July 14 from 12:00pm-5:00pm.
Events are free for all members, and if you’re not a member already, all you need to do to join is fill in this simple membership form. There is no cost involved.
We will have lunch upon arrival and will have all afternoon on the roller coasters, waterslides and climbing walls for the serious adventure junkies. If you’re after something a bit more relaxing, there are optical illusions, an ancient forest to wander through and a butterfly house. There’s something for everybody.
Looking forward to seeing you there!
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In the recent edition of The Wire, the date for this trip was incorrectly noted as July 17 so apologies for any confusion.
Thank you to all who turned out to our Family Day at Hampden Park on Saturday!
There were around 70 people who attended and it was an excellent opportunity for old friends to come together and for new friends to be made.
We were given a tour of the 52,063-seat stadium and got to explore the Hall of Fame and Football Museum. FIFA on the Xbox proved to be a popular museum exhibit!
Following the excitement of the museum, we went upstairs to the Millenium Suite and got to enjoy the panoramic views of the stadium over a tasty lunch.
While on the tour, we were given the chance to kick a ball into a goal and have the speed recorded. Teamophilia Scotland has some strong kickers with speeds in excess of 45km/hr recorded!
If you were unable to make it on Saturday, take a look at our Events calendar for our upcoming events. We hope to see you at one of our events soon!
We have just added some new pages to this website so that you can get to know our Mentors better.
We are lucky to have some fantastic people volunteering as part of our Parent Mentor Project.
The project helps to make connections between families affected by bleeding disorders. Sometime it is useful to talk to someone who isn’t a healthcare professional but still understands what you are talking about. Friends and families can offer a lot of support but don’t always have the experience of life with a bleeding disorder that you need. That’s where the Parent Mentoring Project can help.
We hope you have as much fun getting to know our Mentors as we had.
At the Funcation Scotland event last week we found some time to ask one of our fantastic mentors, Steven Gladstone, to record this short video.
In the video he explains why he decided to get involved in the project and some of the benefits families across Scotland are getting from it.
Ultimately, the project gives families, mainly with younger children, a chance to really get to know someone with relevant experience of living with a bleeding disorder. Thanks to home delivery and improved treatment most people spend less time in their Haemophilia Centre. While this is obviously a good thing it does mean there is less chance to strike up a conversation with another family with a bleeding disorder. A big part of the project is bridging that gap.
You can find out more on our Parent Mentoring Project pages.
Diagnosis can have a big impact on parents
Although some families find it helpful to spend time with older people with bleeding disorders it is important to remember that it can also be scary for patent who is new to the condition to meet people living with serious joint damage.
A bleeding disorders diagnosis can have a serious impact on the whole family. Sibling relationships and rivalries are complex but there are surprisingly few studies look at families with a bleeding disorder. There are positive sides to having a brother or sister with a bleeding disorder. It can help improve a child’s ability to take responsibility as well as their communication skills. However, some siblings, especially sisters and middle children, can experience anxiety and feelings of guilt. It is striking brothers report that they believe that their own quality of life would be better if their sibling didn’t have a bleeding disorder. Siblings also say that they need more information about bleeding disorders and that they need more time and attention from the adults in their lives.
A common mistake it to encourage guilt and to expect inappropriate levels of responsibility from young siblings; siblings shouldn’t be seen as supplementary care givers. However, it can be very helpful for siblings to feel involved and to be encouraged to ask questions and express their feelings about the impact of the bleeding disorder on the family. As far as possible parents should treat and discipline all their children the same way. However, ultimately, the best way to support children with bleeding disorders and their siblings is to support their parents and trust them to make good decisions.
Seeing your child in pain can be extremely distressing; as can having to hold a child down to find a vein and for treatment. Parents often also feel an enormous weight of responsibility which can make it hard to let others, even another parent, care for a child with a bleeding disorder. However, family bonds can be strengthened by the experience and some parents are more relaxed once they can do treatment themselves at home.
Adolescence is a difficult time for parents. It is hard to step back and let a young person start taking responsibility for their treatment and to make their own mistakes. Adherence to treatment can often worsen in this period as well. Transition to an adult Haemophilia Centre can also add stress; although often parents are more worried about this than their adolescent with a bleeding disorder.
Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.
By becoming a Parent Mentor Volunteer you can make a real difference
We are looking for people with experience of raising a child with a bleeding disorder to get involved in our exciting new Parent Mentoring Project.
The project offers training and paid expenses for experienced parents or people with a bleeding disorder to become mentors for young families.
We think it is a great opportunity to give families real support when they need it most and to make use of the skills and experience of our members.
If you are interest please read the advert, study the role description, fill in the application and complete the equality and diversity form today.
We look forward to hearing from you.
I am very happy to introduce myself as the new Parent Mentor Coordinator for Haemophilia Scotland and I look forward to meeting all the families who will receive our support. This is a very exciting project that I am fortunate to become a part of and I hope to really hit the ground running!
Over the next 8 months I aim to recruit and train volunteer mentors to support families in Scotland affected by bleeding disorders, particularly parents of children who have been newly diagnosed. Haemophilia Scotland will also aim to set up a parents group and a family event so that families can meet up socially, share their experiences, gain knowledge and support one another. This support will enable families to understand and manage the condition, leading to earlier intervention and resolution of problems.