The internet changed everything when it came to publishing. It's now easier than ever to share your thoughts with hundreds, thousands or even millions of people.
This also makes sharing information really easy, which can be both a good thing and a bad thing. Unfortunately, for every great, accurate article out there, someone has written a load of trash that just doesn't make sense, is outdated, or completely incorrect. All of us still have this weird sort of in built respect for anything that is written down, and so sometimes we just accept any old nonsense because someone bothered to write it and publish it.
I think that we all need to be a bit more careful, and make sure that what we're reading is accurate and up to date. Little Hearts Matter just got something called "the information standard", which is only given to websites and organisations who know what they're talking about. You can check out www.lhm.org.uk and see all of their information.
I also like the website "how stuff works" because it has lots of interesting articles, is easy to read and it's written by professionals at the discovery channel, so it's fairly trustworthy. I thought that I'd share with you here their article on the human heart, which is excellent. It's important to understand how the heart works so that you can understand how the operations have helped to keep your heart working as well as possible. Anyway, here's the link:
http://www.howstuffworks.com/life/human-biology/heart.htm
Thursday, 28 February 2013
Sunday, 17 February 2013
"I wanted to eat the whole plate!"
Today's story comes from Colbie-Kate, a young member of LHM, who has been working hard to funraise for LHM.
Hello, my name is Colbie-Kate and I am 10 and I have Congenital Heart Disease. Throughout February my school will be fundraising for Little Hearts Matter and I thought I would share with you what we will be doing.
On the 15th February we had a cookie bake; we will also be doing it on the 22nd February. Everyone really enjoys when we sell them. I really enjoy fundraising for Little Hearts Matter. I went around 5 classes and asked if anyone had anything they would like to comment. Here is some of the stuff they said...
Thank you for reading and when I find out how much we raised I will try my hardest to tell you what the total of money raised is.
Thank you,
Colbie-Kate
Thursday, 14 February 2013
Teenagers made a video about their heart condition, it took a while...
These are just the bloopers from our video, to check out all the other parts of the DVD (like professional interviews and the main video!) click here and pick what you want to watch from the "I've only got half a heart... understand me?" section.
Stopping bullying, making new friends, and getting more involved with LHM.
Ben Hall has been a member of LHM's Youth Council since it began, and works hard to raise awareness about congenital heart disease and the difficulties that might arise from it. He supports younger children and uses his experience to help with projects to create information tools. Here he gives some tips about bullying.
Over the years I have been to lots of Little Hearts Matter events: award ceremonies, youth council meetings, open days, DVD filming workshops, and much more.
Ben chats to Baroness Howarth, Patron of LHM.
As you start to do more, you get to know more of the older members and staff who are all really friendly. You even meet the people in charge of the charity, like the trustees and the chairperson. It's really easy to get more involved as well, for example you can join the Youth Council and Facebook group, which is so much easier than writing or waiting till the next Open Day comes around.
You could also text people, for example I text Evie, another LHM young member and youth councillor, after we met at an LHM event. Because she lives in Cornwall and I live up north in Chester, texting is so much easier than getting the train or writing, mainly because it’s cheaper.
As the years have gone by, LHM have started to concentrate more on dealing with bullying, which is good because it helps me and everyone in secondary school come over the fear of being bullied, and it helps them to deal with bullying. In my own experience I have never been bullied. Yes, I have been called names but I just turn around and say, ‘Yeah, so!?’, that way they have no idea how to respond and the “bully” just walks away. If bullying becomes a real problem, it's best to talk to a teacher or your parents. You might think that you are being a grass, but if someone is a bully then they don't deserve to be protected.
At the last LHM Open Day we learnt that all schools have to have an anti-bullying policy, it's the law. If you don't want to talk to your teacher or your parents you can email jon@lhm.org.uk or you can call Childline on 0800 1111. Jon has lots of experience talking to children with heart conditions and young people that are being bullied, and Childline is completely confidential and available 24/7.
Childline offers a confidential, non-judgemental service. The number is free and won't appear on your bill.
Making new friends is always hard, and I can understand how hard it is to get to know new people when you’re young, however its really easy in LHM because you have something to relate to with all of the other kids. So if you don’t know how to introduce yourself just go up to someone who you don’t know and say ‘I have hypoplastic left heart syndrome and a pace maker, what heart condition do you have?’ it works every time (of course if HLHS isn’t your heart condition then just say yours instead!) You can’t really try that at school as you may get a few weird looks, but in LHM everyone has a heart condition or knows people with heart conditions so it’s completely normal.
Hope to see you at the Open Day on March 2nd!
Editor's note: Nobody should have to go through bullying, everyone has the right to be happy and safe at school. Bullies pick on any little thing that makes someone different to other people, and that means that sometimes bullies pick on people's heart condition. We know that lots of young people can feel really negative about their heart condition because of this, but it's important to remember that if it wasn't your heart condition, bullies would pick on something different. Everyone's different, there's no such thing as normal, and your heart condition is just a part of who you are.
It also shows that you're incredibly brave and strong, you've come through multiple open heart surgeries! If you find that you're feeling down on yourself or sad about your heart condition, then please get in touch by emailing jon@lhm.org.uk or calling childline. You can also speak to a childline counsellor online through their chat service. You don't have to go through it alone. Click here for the childline website, where there is lots of information on bullying, including how you can get it stopped.
Over the years I have been to lots of Little Hearts Matter events: award ceremonies, youth council meetings, open days, DVD filming workshops, and much more.
As you start to do more, you get to know more of the older members and staff who are all really friendly. You even meet the people in charge of the charity, like the trustees and the chairperson. It's really easy to get more involved as well, for example you can join the Youth Council and Facebook group, which is so much easier than writing or waiting till the next Open Day comes around.
You could also text people, for example I text Evie, another LHM young member and youth councillor, after we met at an LHM event. Because she lives in Cornwall and I live up north in Chester, texting is so much easier than getting the train or writing, mainly because it’s cheaper.
As the years have gone by, LHM have started to concentrate more on dealing with bullying, which is good because it helps me and everyone in secondary school come over the fear of being bullied, and it helps them to deal with bullying. In my own experience I have never been bullied. Yes, I have been called names but I just turn around and say, ‘Yeah, so!?’, that way they have no idea how to respond and the “bully” just walks away. If bullying becomes a real problem, it's best to talk to a teacher or your parents. You might think that you are being a grass, but if someone is a bully then they don't deserve to be protected.
At the last LHM Open Day we learnt that all schools have to have an anti-bullying policy, it's the law. If you don't want to talk to your teacher or your parents you can email jon@lhm.org.uk or you can call Childline on 0800 1111. Jon has lots of experience talking to children with heart conditions and young people that are being bullied, and Childline is completely confidential and available 24/7.
Making new friends is always hard, and I can understand how hard it is to get to know new people when you’re young, however its really easy in LHM because you have something to relate to with all of the other kids. So if you don’t know how to introduce yourself just go up to someone who you don’t know and say ‘I have hypoplastic left heart syndrome and a pace maker, what heart condition do you have?’ it works every time (of course if HLHS isn’t your heart condition then just say yours instead!) You can’t really try that at school as you may get a few weird looks, but in LHM everyone has a heart condition or knows people with heart conditions so it’s completely normal.
Hope to see you at the Open Day on March 2nd!
Editor's note: Nobody should have to go through bullying, everyone has the right to be happy and safe at school. Bullies pick on any little thing that makes someone different to other people, and that means that sometimes bullies pick on people's heart condition. We know that lots of young people can feel really negative about their heart condition because of this, but it's important to remember that if it wasn't your heart condition, bullies would pick on something different. Everyone's different, there's no such thing as normal, and your heart condition is just a part of who you are.
It also shows that you're incredibly brave and strong, you've come through multiple open heart surgeries! If you find that you're feeling down on yourself or sad about your heart condition, then please get in touch by emailing jon@lhm.org.uk or calling childline. You can also speak to a childline counsellor online through their chat service. You don't have to go through it alone. Click here for the childline website, where there is lots of information on bullying, including how you can get it stopped.
Friday, 8 February 2013
Do you do your INR tests at home?
This special report is from Suzie Hutchinson, Chief Executive of Little Hearts Matter. It's all about warfarin, INR testing and helping to make your life easier. Don't know much about warfarin and INR? Get educated...
Hello Zippers. Yesterday I attended a reception in the House of Commons hosted by a group of charities called the Anticoagulation Self-Monitoring Alliance, or ACSMA for short. (Not to be confused with the American Canine Sport Medicine Association, which totally exists.)
Anyway, at the reception they had speeches and presentations, and the overall aim was to raise a greater awareness of the need for home monitoring of INR when a child or adult is on warfarin.
And where better to raise awareness?
At the moment, there are 1.2m people taking Warfarin in the UK but only 2% of them have access to home monitoring. I'm sure that your speedy maths has worked out that means that only about 24,000 out of those 1.2m can do their tests at home, which means that all of the rest (about 1,176,000) have to go to the either hospital or their GP every time they need a blood test. Most of them have to have a full blood test because a finger prick test is not available.
I know what you're thinking. That sounds like a real pain in the neck for the people that have to go to the doctor or hospital. Especially when they could take a teeny bit of blood from a finger prick and put it in a handheld machine at home. It also sounds pretty expensive, taking up doctors time with something that you could do yourself. Well, the NHS were worried about this, so they did a big study, and worked out that even if only 25% of people had access to home testing it would save the NHS £62 million a year.
The home machines to test your blood levels, called CoaguChek, fit in the palm of your hand.
Luckily, this makes so much sense that even David Cameron agrees, in 2011 he said…
"I'm annoyed about this and want to do something to help! Right now!" I hear you say. Well, you're not alone, most of our young members are on anticoagulation therapy for life, so this is a big issue for Little Hearts Matter members. Here's what you can do:
1. Visit the ACSMA website and find the page for their campaign. (Or just click here if you're lazy.)
2. Add your name and details (they won't spam you, they're cool.)
3. Give yourself a massive pat on the back for helping to increase the chances of home-monitoring for everyone on warfarin.
4. Ice cream.
5. Get all of your friends to do the same if you're feeling particularly heroic.
We know that lots of young people don't really understand anticoagulation and warfarin as much as they'd like to, but they think that they should know so they are a bit embarrassed to ask. That's cool, Little Hearts Matter have developed a new information booklet that explains everything that you need to know about anticoagulation. We are very grateful to Roche, who make the INR machines, because they have offered to pay for the books publication. Hopefully it will be available for everyone soon, and we'll post a link to zipzipper as soon as it's ready!
Hello Zippers. Yesterday I attended a reception in the House of Commons hosted by a group of charities called the Anticoagulation Self-Monitoring Alliance, or ACSMA for short. (Not to be confused with the American Canine Sport Medicine Association, which totally exists.)
Anyway, at the reception they had speeches and presentations, and the overall aim was to raise a greater awareness of the need for home monitoring of INR when a child or adult is on warfarin.
At the moment, there are 1.2m people taking Warfarin in the UK but only 2% of them have access to home monitoring. I'm sure that your speedy maths has worked out that means that only about 24,000 out of those 1.2m can do their tests at home, which means that all of the rest (about 1,176,000) have to go to the either hospital or their GP every time they need a blood test. Most of them have to have a full blood test because a finger prick test is not available.
I know what you're thinking. That sounds like a real pain in the neck for the people that have to go to the doctor or hospital. Especially when they could take a teeny bit of blood from a finger prick and put it in a handheld machine at home. It also sounds pretty expensive, taking up doctors time with something that you could do yourself. Well, the NHS were worried about this, so they did a big study, and worked out that even if only 25% of people had access to home testing it would save the NHS £62 million a year.
Luckily, this makes so much sense that even David Cameron agrees, in 2011 he said…
“There’s a finger-prick blood test that allows patients on anticoagulation therapy to self monitor their blood clotting time. It’s effective, convenient and, in the end, cheaper for the NHS”
- The Prime Minister telling it like it is.
"I'm annoyed about this and want to do something to help! Right now!" I hear you say. Well, you're not alone, most of our young members are on anticoagulation therapy for life, so this is a big issue for Little Hearts Matter members. Here's what you can do:
1. Visit the ACSMA website and find the page for their campaign. (Or just click here if you're lazy.)
2. Add your name and details (they won't spam you, they're cool.)
3. Give yourself a massive pat on the back for helping to increase the chances of home-monitoring for everyone on warfarin.
4. Ice cream.
5. Get all of your friends to do the same if you're feeling particularly heroic.
We know that lots of young people don't really understand anticoagulation and warfarin as much as they'd like to, but they think that they should know so they are a bit embarrassed to ask. That's cool, Little Hearts Matter have developed a new information booklet that explains everything that you need to know about anticoagulation. We are very grateful to Roche, who make the INR machines, because they have offered to pay for the books publication. Hopefully it will be available for everyone soon, and we'll post a link to zipzipper as soon as it's ready!
Wednesday, 6 February 2013
Learning to drive with Motability
Hannah Palmer talks about learning to drive and the independence that it gives her. She also reveals some tips about DLA and motability, which can help you get driving quickly.
Finally! After nearly a year of driving lessons, theory tests and practical tests I, Hannah Palmer, can DRIVE!! And I've only been 17 for a month!
This was only possible through the help of Motability, a company that allows teenagers who are on the higher rate mobility component of the Disabilty Living Allowance to have driving lessons from BSM at age 16.
I first heard about the grants that Motability offer at the Little Hearts Matter Open Day last year from BSM. After the conference, I contacted Motability about the grants that they offered and they approved my application, which included 40 hours of driving lessons with BSM.
All I had to pay for was my provisional licence, and my practical and theory tests, which was amazing (even though I had to do 2 theory tests) and a few extra driving lessons to make sure I was up to standard.
I love being more independent because I feel more adult and it gives me more freedom. I would highly recommend anyone coming up to the age of 16 who is on the Higher mobility rate of the DLA to contact Motability and complete your own Road to Independence!
Hannah's parents are very proud of her. Her Dad said:
"When we first found out Hannah had a single ventricle heart we didn't dare think past the next few months - it's hard to believe that 17 years later Hannah has passed such an important milestone. Thanks to Little Hearts Matter, Hannah not only found out about Motability - she has the confidence to face life head on! Thank you Little Hearts Matter!”
Finally! After nearly a year of driving lessons, theory tests and practical tests I, Hannah Palmer, can DRIVE!! And I've only been 17 for a month!
This was only possible through the help of Motability, a company that allows teenagers who are on the higher rate mobility component of the Disabilty Living Allowance to have driving lessons from BSM at age 16.
I first heard about the grants that Motability offer at the Little Hearts Matter Open Day last year from BSM. After the conference, I contacted Motability about the grants that they offered and they approved my application, which included 40 hours of driving lessons with BSM.
All I had to pay for was my provisional licence, and my practical and theory tests, which was amazing (even though I had to do 2 theory tests) and a few extra driving lessons to make sure I was up to standard.
“It’s a lot easier for my parents now. No more calls bugging them for lifts at all hours.”So here I am; 8 months, £176 and a driving licence later, I've got a very nice Ford Fiesta through Motability that I drive everywhere... literally everywhere! Now I can drive, I feel a lot more independent. I can do a lot more, which is important to me because, being 17, I want to be able to go out when I want and do what I want to do. It’s a lot easier for my parents as well, as they don't get calls at all hours of the night saying 'Can you pick me up now?' or ' What time can I stay out till?'. In fact, I now get calls asking me to take them everywhere!! And my friends love me even more!
I love being more independent because I feel more adult and it gives me more freedom. I would highly recommend anyone coming up to the age of 16 who is on the Higher mobility rate of the DLA to contact Motability and complete your own Road to Independence!
Hannah's parents are very proud of her. Her Dad said:
"When we first found out Hannah had a single ventricle heart we didn't dare think past the next few months - it's hard to believe that 17 years later Hannah has passed such an important milestone. Thanks to Little Hearts Matter, Hannah not only found out about Motability - she has the confidence to face life head on! Thank you Little Hearts Matter!”
Subscribe to:
Posts (Atom)