LHM is lucky because we have super intelligent teenagers who always talk to the charity about what we should be doing. They are complete experts, because they have lived (and are living) through their teenage years with a serious heart condition. That means that when something screws up, they can think about how it would have been better. They think about this stuff and get in touch with each other and LHM to see if together we can make life better for younger people.
Most recently, some of the teenagers that have made the move to adult hospitals (this is sometimes called 'transition'), got together and wrote a list of stuff that they think teenagers should know about their heart. The way that they looked at it, if parents and doctors and LHM talked to young people gradually over lots of years, it will make the whole move into adulthood smoother and easier, with no nasty shocks down the line.
So, here's their list. It's not just about what our Youth Council thinks though. If you disagree, or you think that maybe something should be added to the list, then just comment on this post or email us :)
Parents, if you're reading this, we'd love your thoughts as well!
1. General information about our conditions. 2. Talk about high school exams (getting extra time etc.) 3. What to do in case of an emergency. 4. Learn our limits. 5. Know that transition will happen in a few years. 6. Learn the names of our tablets.
1. Learn what each of our medication actually does.
1. Learn the effects that drugs and alcohol can have on our bodies and hearts. 2. Start to talk about relationships. 3. Start to talk about transition in more detail.
1. Be prepared for workload to increase massively with GCSEs 2. Talk about sex in detail, including how anything to do with our condition. 3. Talk about contraception, different options for girls. 4. Talk about problems with sex (for instance STIs) 5. Talk about realistic future careers and education options.
1. Know everything that there is to know about transition and how it works 2. Talk about driving, whether you can learn early an if you can get motability. 3. Know fully how we can be affected by not keeping to our limits.
1. Learn about becoming an adult. 2. Learn about what will be legal/illegal 3. If going to uni/college learn about our limits, and what support is available to us there. 4. More mature relationship information. 5. Learn about the implications of the condition and its effect.
1. Should be a complete expert in your own condition. 2. Know all about career options.
So...what do you think? I think that we can continue to add to this list until we have a really complete guide of stuff that you should know. It could become a bit of a checklist of stuff to talk about with your parents. Thoughts in comments please!
