Asthma Death in Children

There is so much research into asthma just now looking at a cure for asthma, better management, getting asthmatics to comply with treatment better but research into asthma death, often a taboo subject to talk about is vital to make any change in the shocking asthma statistics.

Ann an children’s asthma nurse specialist is also one of the PhD students at the Asthma UK Centre for Applied Research. Her PhD is looking to speak to parents of children who have died from asthma.

The importance of this I think is two fold.

Initially the whole concept of this PhD came from one of the Patient and Public Involvement Leads at AUKCAR whose own daughter died from asthma. Having a PPI member come up with the research idea and the centre then backing it really highlights just how much AUKCAR values the patient and public group by implementing project ideas that come from them.

Secondly this PhD is so vital. Only a few months back it was revealed that across Europe, the UK has the worst rate of asthma deaths and a rate that we all hoped would improve after the National Review of Asthma Death (NRAD) was published in 2014. However this is not the case.

In the UK death is very much a taboo subject. People don’t like using the term death or died. You see the term passed away or lost- you don’t lose someone if they die because if you go looking you won’t find them again. Asthma death is just that and I know people who have had family members die from asthma also do not like the term lost.

For the first time research is being undertaken by an asthma nurse specialist who deals with a number of people with severe and life threatening asthma. Rather than speaking to medical staff, Dr’s and nurses Ann is going to be speaking with those directly affected by asthma death. Ann wants to speak to parents or carers whose child has died as a result of asthma. Speaking to you will mean we can learn from your experience and make a change for the future.

Have you been affected by asthma death in the last 10 years (in or after 2008)? Has your child died between he age of 5-24 and you were there with them. Would you like to speak to Ann and help make a change for the future?

All you need to do is email Ann: ann.mcmurray@ed.ac.uk or by phone/ text on 07976582297. You will have a single face to face chat with Ann in a place that you are comfortable which will last no longer than 2 hours.

The study has been reviewed by the West of Scotland Research Ethics Committee 3 (WoSREC3) and Patient Public Involvement volunteers of the Asthma UK Centre for Applied Research (AUKCAR).

 

Emotions and detachment

This evening I feel totally drained and really emotional but the feeling is strange it is almost a detachment from what I should feel. I can’t really describe it. I think it perhaps is a coping mechanism I have when dealing with a certain situation I don’t like and don’t have a choice to avoid.

What am I talking about?

An asthma attack. Previously I have written about how my method of coping with life threatening asthma attacks is to not remember what happens. Until today I never thought of the implications that this has. By not only blocking out my own memories of the attack I also block out my own memories of my parents worry and looks on their faces and how they feel knowing their daughter can’t breathe and could be heading to intensive care if it doesn’t get turned around.

Today I met 2 inspirational people who in the face of a very tragic situation are trying to make a positive. Their daughter died of an asthma attack. She was a similar age to me- just a year younger. At her funeral they were shocked at how many people didnt know how bad asthma could be and they have pledged to raise money for asthma research to help find that cure that everyone with asthma hopes for but no one knows where to find it. I was in awe meeting them as I had no idea how they could be so strong in such sad circumstances.

Listening to her mum talk made me think of my parents and what they must go through if they have to take me to hospital or when they are sitting in hospital with me. I have never even thought about how they feel when seeing me not able to breathe. I block it all out so I don’t remember any of it. I am scared to ask them if they are scared or worried about what may or may not happen. Part of me wants to know but then i am scared. I know I can’t stop having asthma attacks but the thought that those who protect you fear for you makes me upset. It is like inflicting pain but the last thing you wanted to do was cause it.

Hearing Lydia’s parents experience made me grateful that I am here but at the same time it has highlighted the very reality of asthma particularly when they talked about how she was fine and looked fine but the next minute they could be calling an ambulance. This is what it feels like for me when I have an attack. I never knew others had attacks like that. It feels when reading about attacks that everyone’s are different but for the first time there is someone whose family described their attacks the same as mine. It has made me want to be more vigilant with my asthma control. I am already doing my utmost but I still have days where I do things I shouldn’t such as a few weeks back playing goalie at lacrosse or going into work when I really should have stayed at home.

I have lost too many friends to asthma and this is another family who has lost a daughter and mother because of asthma. I want to help in any way I can to raise the profile of asthma and how serious it can be a even friends who I have known for 20 years don’t know how serious asthma can be and they should. I don’t want to use shock tactics but asthma does kill and its the reality. So…..

#aworldthatcanbreathe

WORLD ASTHMA DAY

Tomorrow is world asthma day and in the UK we are well into putting asthma in the limelight. I thought I would share the things I am doing for each events but also what asthma means to me.

Below are a selection of pictures of the stuff I ahve from asthma UK to use throughout the week promoting asthma and raising awareness. I chose to focus my efforts on school children so I am going into an after school club I used to work for and will be giving the kids some fun stuff such as the ribbon and stickers and balloons (I jsut need to egt them to blow them up!!!) On a more serious side though I will do a littrle session with them about inhalers and what to do in case of an asthma attack and will see how many kids have asthma etc.

For the parents I have more serious stuff and will be about for them to ask me questions. I have information books about what asthma is and how asthma may effect a child and also the after care of an attack as it can be physcoloically very difficult for a child to deal with any sort of asthma attack.

I will also give the parents an asthma attack card to personalise for their child and for their child to carry about with them so they can have that bit extra security that if their child were to ahve an asthma attack then all the child has to do is show the card and it will give instructions on what to do and in what order etc.

Of course throughout all this week I will be wearing my lime green asthma UK t shirt. I know some of my friends over the pond will be wearing grey for world asthma day but as I ahve my asthma UK t shirt I will be wearing it (although will need to change out of it while I am in my uniform on shift at the hospital!!!)

For me I am kinda of proud to have asthma and thankful for asthma. Although it can be an utter pain in the neck at times. I think I wouldnt be doing all this stuff if i didnt have asthma and I would know half the people I do know if I had normal lungs. Althoughy during an attack I hate asthma with a vengence and yes all the drugs are a pain and probably not great for my body in the long run but it is worth it.

The list is endless of things I wouldnt have done had I not had asthma but here are my top ten!!!!

1) Become a nurse!!!!

2) Been part of the cross party group meeting for Asthma at the Scottish Parliament

3) Runt he Edinburgh relay marathon

4) Been student development officer of Winchester student Union

5) Had this blog

6) Met some great friends!!!

7) Moved back to my home town!!!

8) Volunteered like I do for Asthma UK

9) Played golf for my Club team

10) Valued every day as you never know when it will be your last.