May is asthma awareness month!!!

May is asthma awareness month. Asthma is a disease which is so misunderstood. Many will live with asthma quite happily and think ‘its just asthma’ but then there is the small portion of people who battle asthma everyday and just getting up in the morning is achievable because of a concoction of medication and then sadly there are those who live with a empty space in their family where a loved one has died as a result of asthma.

So this month my aim is to try and out something everyday which will show what you can do despite asthma, what asthma has stopped people doing, what asthma has caused, what we have learned from having asthma, the day in the life of someone with severe asthma, work and asthma, sport and asthma.

But for today I am going to start on a high and write about the good side of asthma, its not a great disease to have and has dictated most of my life but having said that if I didnt have asthma I would not have had the oppertunity to do some of the most amazing things which I am so proud of.

Just now my biggest honour really is to be part of the ‘Healthcare Hero’s’ Book. I received an email the other day titled ‘Getting our Hero’s Together’. I am hugely proud to be part of the Healthcare Hero’s but have difficulty thinking anything I have done is special. What I do is to try and benefit people but essentially as I have said before if I didnt do things I would curl up in a ball and become depressed about how much asthma has taken from me and what it has stopped me doing becoming a total recluse. To be in a book with some amazing people is a true honour. Just to be along side a man who engineered a device for his own heart so he didnt have t live a life on blood thinning drugs, or the amazing lady behind compassionate care who has sadly died but her husband is continuing her work. To read the stories in the book or online is eye opening just seeing what people will do. So tomorrow I am going to Manchester to meet up with the other Hero’s from the book and for me I will be celebrating World Asthma Day but also overcoming a really difficult time for me personally so by getting myself to Manchester will be a huge achievement.

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Having a piece of writing published in the British Medical Journal was also pretty awesome. What makes it more awesome is that I always struggled with writing throughout my school career and told I was lazy but it was not until I went to do my second degree of Nursing that it was discovered that I was dyslexic and pretty badly which meant I had a reader and scribe in exams and was given all this help to get me through my nursing. So maybe I would have done better than an E in English at school had I known I was dyslexic. I now have a purple cover when reading books and it makes life so much easier. Back then I never thought I wold ever be a published writer but I am. What is even greater is that it was a learning tool for Dr on how to treat an acute asthma attack and seeing this implemented in practice is awesome especially when I was in resus once and one of the Dr’s said they read this piece about the things asthmatics find helpful when having a severe attack. I was able to write to him on the paper and pen he offered me to say I wrote it. I was so chuffed that it has had an effect on some Drs practice.

My next thing which has helped me through the last few years is my involvement in Scotland Lacrosse. After moving from a field position to the goal (18years after last stepping in a goal) I never thought much of it but being able to play for the Scotland B team at Home Internationals was awesome but then after having to stop playing even in goal I was able to take on the position of Assistant Manager which I was kindly given the nickname AssMan (short for assistant manager) which I have decided to own. I am one for nicknames and never been called my real name except at work and research stuff so AssMan joins Tux, Olive, Ollie (of all spellings), Liv, Livi (again many spellings), Wivvers, Wheezer to name a few, I am sure there are more that I have forgotten (or intentionally forgotten). Being able to go to Florida with the Scotland team in the preparation for World Cup was amazing and probably once in a lifetime experience, but I will be able to see them in action at the World Cup as I will not be with the Scotland Team but will be joining the Technical Crew doing match statistics for the World Cup so will be front and central for most matches- although I will need a lot of concentration.

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But my proudest achievement is being part of the Asthma UK Centre for Applied Research as a Patient and Public Involvement lead and helping facilitate SPEAK Asthma- the children and young peoples group. Having a role like this has given me a totally new perspective on research and opened my eyes to how much researching actually going on.  It has also given many other opportunities such as speaking at the Annual Scientific Meeting (and crying during my speech but at least I wasn’t the only one who cried!), giving a lecture to Masters students who are doing a Masters in Clinical Trials, I have been able to go to many different things at the Scottish Parliament and was invited to the British Government last year but sadly due to my asthma I was not able to. I have also spoken at events with GSK and learnt about new medications which are coming out and also now do work with Astra Zeneca for their Patient Centricity program. It is so awesome all the things I have had the chance to do because of the centre let alone all the things I do with them such as lay summary reviews, PhD application reviews, help PhD students, the list is endless and I love every minute of it even when not feeling 100% I still want to go to things as its such a great centre and has really given me my life back and given me something to do when I am not feeling great. It is putting a really big positive spin on a bit of a rubbish situation.

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I have things coming up in the near future which I am looking forward to such as the Usher Institute Showcase and being involved in things with the European Respiratory Society as well as getting emails from a variety of different researchers (not part of the centre but from all over the world) who have read this blog and want to get in touch.

I guess having things I am proud of really do keep me going when things are not so good. I was able to draw on these things when I was last in hospital and didnt think I was that unwell but was as my best friend thought I was drunk with the messages I was sending but the admission was really hard especially the 3rd time the ITU Drs came to see me and this was after being discharged from ICU but kept getting worse again and I really thought I didnt have the fight left in me to keep going and not let the attack get the better of me but thinking about all these things I am proud of makes the fight worthwhile- that and thinking of all the Scotland players as they do their insane strength and conditioning stuff- I guess asthma attacks are my version of strength and conditioning although an asthma attack burns and insane amount of calories as I found out from waring my FitBit during one attack!!!

But keep hold of the positive things in your life and these will keep you going and help you reach and achieve your goals no matter how big or small they are.

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(I got this bracelet from a really good friend who knows just how tough life is with rubbish lungs but this saying says it all!!)

“Just relax and concentrate on your breathing”

I smile to myself as I write this post for a number of reasons. It seems apt to write this while I can’t sleep because of my asthma and am sitting on the couch hunched over with a neb making it easier to breathe- I wish I could just relax back it would be so nice.

But I have the biggest smile because just about a year ago I was asked if I would be interested in writing an article for the British Medical Journal (BMJ). I agreed. It was for a patient series called “What your patient is thinking!”.

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I obviously focused on asthma, but concentrated on one specific part of asthma and that was during an exacerbation which results in you ending up in Accident and Emergency. The piece was to be written as a learning tool for Dr’s to help them make the patient experience a better one. Sometimes patients may have a bad experience in hospital and it is not because of lack of care but sometimes they way they are spoken to, or they are not listened to etc. There can be a variety of little things that can really make a difference to the outcome for the patient.

I had three key points I wanted to share, and am pleased that so many people have commented on the piece saying they have felt the same but they thought they were the only ones who felt as they did. The points were:

let the patient be comfy- when struggling to breathe there is no comfy position but a patient will have a way they want to sit or find they get some respite. I like to sit bolt up right or brace myself against my knees leaning forward a bit.

Please don’t say “just relax and concentrate on your breathing”- it seems like a very kind an innocent thing to say but it gets really wearing on a patient when everyone they see in A&E tells them this but in reality you can’t relax and the more you concentrate on your breathing the more you focus on how hard and terrifying the situation is and therefore end up making the whole thing worse by adding panic into the mix of an asthma attack. Often as medical practitioners we don’t think how the patient may feel hen we try to say things of comfort like this. It is my pet peeve in hospital and grates on me when someone says that!

Lastly was to give the patient time to talk, it may look difficult and hard work but if the patient is wanting to talk let them, or offer them pen and paper if it looks like it is too much work. Often the patient can tell you vital information about their asthma and things that will help which can help speed the recovery of the attack up. I do find that I want to talk unless I am at the point of exhaustion and even breathing just feels like too big an effort. By focusing on getting my words out I am not focusing on the difficulty breathing and can find talking distracting sometimes. If I don’t want to talk I won’t but I really appreciate it when a Dr will take the time to listen even if it is 2-3 words between breathes.

I hate to think that others go through hard times with their asthma and have rough experiences in A and E but I have really appreciated the comments from people who read the article and that they can relate to it. I didnt only want to write it for me but for everyone who attends anywhere with asthma, or an asthma attack as generally we all feel kind of similar so I hope that more people can read this and maybe perhaps make even just one patients experience of asthma better.

I am also having a small chuckle to myself because I still cannot believe I have published an article in a journal. When I did Sports Science when I first left school I always dreamt about having a journal published but back then never did I think it would be something like this. If I am honest being published was a bit of a pipe dream. Especially as I got an E at my A Level English despite working my ass off but thankfully (i think thats the right word) when I sat an entrance test to do my Nursing they picked up that I am pretty badly dyslexic because I write my letters back to front and some other things. This discovery has been a blessing as it means I may very well get more things published as I have really enjoyed doing it and really enjoy writing wether it is for my blog or PPI stuff or work. I do wonder though what my English teacher would think now after years of despair trying to teach me- it was like teaching the unteachable!

I want to say a massive Thank you to all the kind comments I have received about my piece and if you want to print it and share it with others please do. The more people who read it the better!!

http://www.bmj.com/content/351/bmj.h6185

AUKCAR PPI update

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I still pinch myself as I can’t believe I am involved in such a fantastic research centre. AUKCAR is a unique virtual centre incorporating 13 institutes which all have teams of dedicated researchers wanting to make the lives of people with asthma better by addressing three key areas: encourage good asthma control, maximise treatment benefits, and reduce asthma exacerbations and asthma deaths. Something which is desperately needed as every day there will be someone somewhere in the UK dealing with the consequences of a loved one dying from an asthma attack.

Since the start of my involvement in AUKCAR I have done things and been involved in things I would never have even dreamt about. By the end of this year (or perhaps January depending on whether it is Dec or Jan issue) I will have had an article published in the British Medical Journal, I will have been to 2 annual scientific meetings for AUKCAR, I have commented on a variety of different things, attended focus groups, sat on patient advisory panels, been part of the PhD reviewing team, spoken to PhD students via a webinar to give them the full story of what living with asthma is really like, but for me there are two things I am particularly proud of, firstly being invited to join the Centre Management Committee (CMC) for AUKCAR and secondly is to be part of setting up the Children and Young Persons group.

Back when I was first asked about joining AUKCAR’s PPI Group I was ecstatic about the opportunity to be involved in such a group breaking centre. I fell into it and had absolute no idea where it would take me- all I knew at the start was that I could do as much or as little as I wanted. It turned out I love doing all of the different tasks we get asked to do so find over the last year and a half I have done quite a few things!! As emails came through I would read things and comment and find the different projects so fascinating that it was really no chore to spend some time putting comments together for the researchers.

From the outset of joining AUKCAR I knew I would be involved in helping with the children and young peoples (CYP) side of things and trying to build PPI for the CYP group. When it started out I really didnt know what I was doing but in time we (myself, a research fellow from AUKCAR and an asthma nurse specialist at the RHSC in Edinburgh) got a group of children and young people and have had several meetings where they have all been so enthusiastic and we have done a few bits of PPI but our first big PPI task will be in the next meeting where a researcher is coming to speak to them and get their feedback. The enjoyment you see them having is great and they have so much enthusiasm that often we don’t get through what was planned as they have so many ideas and there is much discussion. We were worried at the start about how to get children involved and if they would get bored but it has been quite the opposite. It is really exciting. Even more so now that there is a group name and logo designed which will be launched soon!!!

Earlier this week I went to my first CMC meeting for AUKCAR. I never dreamt I would ever be part of this, it never really registered with me what the CMC was when I was at my first scientific meeting in Oxford last year. But now having been invited to be part of it I think it is a big deal. To me it is a big deal. It means being part of the team that manage the centre. I was sitting in a room with what can only be described as some the best asthma researchers in the world. I really didnt know what to expect. I have met all of them several times before and all of them are lovely but when asked my opinions on something I was kind of shocked as to me these are the guys who do all this research and understand all these statistics etc that fly around yet they were asking for my views, initially I was thinking I only have asthma what do they want to know from me, but as the meeting went on it was so clear to see how much the centre value the input from the “people who just have asthma” and see it as far more than that. Their research is shaped around what the needs of people with asthma are which is what makes the centre so unique. Patient and Public Involvement (PPI) is embedded in all the research they do from PhD researchers, early career researchers to the researchers at the top of their field. No research is exempt from PPI. The meeting was a really good experience even if the statistics and data parts went totally over my head. I am really excited and looking forward to the next few months with the annual scientific meeting, going to the FARR Frontiers meeting thing and another CYP Group so lots going on.