Hi everyone,

Just wanted to update you all on how the trip to London went.

As some of you may remember, my mum and I were asked last month by my Pain Management Doctor if we would go to the House of Commons in London to speak about School's not understanding Chronic Pain Conditions. My PM Doctor knew that we have had problems with School so thought it was the perfect oppertunity for us to go and speak out.

The trip to was really interesting. When we got there, we were lead into a massive room where all of the MPs went and had their big meetings and where the Prime Minister has been a lot of times also.

In the room were about 50 kids and their parents. When everyone got there, the MPs started coming in and the local news stations and explained to us what we had to do.

There was a panel of 5 MPs and Education Seceteries from all over the Country. Before we went to the meeting, we were told to write down a question that we wanted to ask to the panel and then the child had to go and speak it out.

There was a lot of children asking all sorts of interesting questions and it was amazing to see how many other children unfortunately, have had to deal with the same problems as me. The children that were there had all sorts of chronic illnesses such as Pain Conditions like myself, Diabetese, Asthma, Cancer, Mental Illnesses, Heart Conditions etc etc.

The MPs were really good at answering the questions. One girl explained how she had had an Epileptic fit and was made to take a really important exam 20 minutes after that had happened!!! I couldn't beleive it when she explained that! She wanted the MPs to try and make sure that the schools will allow additional time for people such as her to take their exams if a problem occurs.

Another girl that spoke out had Diabetese and started to feel ill in class so asked her teacher for something to eat. Her teacher didn't believe that she was ill and told her to just got on with her work so she went into a massive Hypo (sp?) and had to be hospitalised!!

Because there was so many children there unfortunately, we didn't all get to ask questions but the questions that were answered, were similar to the ones we all had anyhow.

It was amazing (and horrible at the same time) to see how many other kids have had similar experiences to me. So many times, I thought it was just myself that had to deal with that so it was kinda interesting to see that it wasn't.

The MPs semt to be really interested in what we were saying and were shocked as to what had happened with all of us. They are going to speak to the Prime Minister about things and hopefully, put some laws into place to ensure that this doesn't happen again. They did explain though that some of the things that happened, shouldn't be because theres laws in place so obviously, some schools haven't been following them! They seem to think that it's a problem with teachers etc being uncaring and not understanding so are going to try and make them ALL have training on how to deal with kids with illnesses, what not to say etc which is a really good idea I guess.

After the meeting was over, my mum and I met our local MP who took the time out to learn about RSD, write down some info about it etc. He also asked us what questions we would like to ask and told us that he's going to try and get back to us asap with an answer.

We also got showed around all of the House Of Commons which was really interesting. None of the other kids got to look round so we felt really special! Our MP showed us where the Prime Minister goes for meetings, the House Quaters etc etc which was really good!

I'll keep you all updated as and when we hear anything!

Thanks again for the support,
Alison

U GO GIRL!
Now lets get our US administration to listen to us.

Ali,

I am so proud of you...I know that with the pain you are going through that it took a lot for you to take the time to go and represent yourself and other children going through this horrible disease. You are the generation that will change the future for all with illness.

After reading some of the issues that go on in the school, It doesn't surprise me. As far as the teachers telling the kids to go back to their seats, it is a problem, one that Administration or the parent needs to be explaining to each teacher about their child. Obviously, they were uninformed, I know as an educator myself, it is very important for me to understand all of my students health issues or disabilities, but, only if they were disclosed to me. So hopefully these issues will change for your schools.

Again, Ali, I hope all is well with you and your family, I keep you in my prayers.

Much love,

Sandy

Thank you both so much for the support ... I really appreciate it!

Olecyn - I hope that there is something that can be done to get American school's to listen to kids with illnesses/disabilities. I know that it isn't just a problem in the UK ... it's a problem worldwide unfortunately. Hopefully some day soon, something will get done before it's too late! I hope you're doing well and thanks for the support!

Sandy - Thank you for the support! ALL of the kids at the meeting and their parents, had told the School's and each indiviual teacher about their indiviual illness and how it affects them but unfortunately, despite all of this, some teachers still didn't want to believe and/or help them! I know for me and many of the other kids that were at that meeting, I have a statement put in place saying that I have an illness and need additional support and ALL of my teachers are made aware of that but they still don't really take much notice of it! We're hoping that the meeting will have helped the MPs realise that more needs to be done and put additional laws into place however from what we were told, some of the things that are happening shouldn't be as the laws are already put in place to protece against them so it seems to be more of an uncaring manner from the teachers.

Thank you both again!

That was a great opportunity! You did a great job.
And it was a learning experience also.

You are a brave gal, Ali. And moving forward to help others as well. I bet your parents are proud of YOU!

Getting things done in the complex world we live in is quite the challenge. So every bit you can do like this, is wonderful.

Hi Ali,

As you know my Lindsay is the one with the fight, and right now we are also dealing with teachers that we have explained the affects of Lindsay's RSD. She is in a major flare, we are meeting with Dr. Kirkpatrick on Tuesday to discuss Ketamine boosters. So I am in a fight with her school as well. I know how some teachers are and it breaks my heart that there are some out there that are in this business to not understand kids and their illness. She has some really supportive teachers and some not so supportive. So I have to be the battler for my child. I have every document in place and they are backed by I.D.E.A. But, unfortunately, everytime she has a flare I have to fight again. My plan for when Lindsay is better and on a good road and possibly in remission after the booster, is to start an advocacy group for children with chronic illness. As I have told you I am a teacher so I know how the system works.

It is funny, I am going to throw this out there, that I always say to them, if my child were suffering from Cancer, you would have a more compassionate understanding or attitude, but because you can't understand my childs illness, you decide to discriminate against her. It is just ignorance as far as I am concerned.

We do have many laws in the U.S. that protect children from the affects of illness and time loss in school. But, as you say, teachers sometimes (not all teachers,) don't care to take the time to understand...They just don't want to care.

Keep going Ali, because like I said before, YOU are the one that can change the small minds of some people for many generations to come.
I AM SOOOOO PROUD OF YOU.

Much love to you, and how is College going????

Sandy

Ali,
You're one of my Heroes!
You know that.
I think you may have found a "calling"?

BTW, what is an MP? (I know, dumb question).

I'm proud of you and happy for you!

You are a role model!

Pete