Asthma Rule 1: ALWAYS have your reliever with you.

On twitter recently you may have seen that I had a small rant about something that happened the other day and I am still reeling over it. I think what got me most is that how are we ever going to change attitudes towards asthma if those with asthma are so cavalier about it.

I was at a Design Informatics Collider with a variety of industry partners, researchers, clinicians, researchers and patients. The theme of the event was ‘Design Support for Asthma’ and what can be done to help asthmatics or those who care for asthmatics which in turn would help asthmatics. There was a group of us patients there from the patient an public involvement group at the Asthma UK Centre for Applied Research. I have met most of the patients before who were there and as always it is great to meet new people in the group too.

So what happened??

One of the patients there was chatting about their asthma and their asthma control but then announced and announced proudly that they had not brought a reliever inhaler with them for the trip (baring in mind they came up by train and stayed overnight). They had their preventer inhaler but stated that their asthma was so well controlled that they knew they would not need their reliever. I was gobsmacked by this, and even quite angry about it especially the pride that the statement was delivered with.

Asthma is such a dangerous condition and there has been so much in the press recently about how many people die from asthma, how under funded asthma research is and just generally how bad the asthma situation is. The national review of asthma deaths (NRAD) which was published 2014 highlighted just how dangerous asthma is and how it is those with relatively mild asthma that are at the biggest risk from death and this year the news broke that rather than there being an improvement in the asthma death rate it has in fact got 20% worse not better.

I feel really passionately that even if you are so confident in your asthma and asthma control as an asthmatic you should never leave without a reliever inhaler especially if you are away overnight. For me my inhaler is my security blanket. I always have a ventolin (reliever) in my pocket, even when in hospital and on oxygen and nebulisers I still have my ventolin in my pocket too!! Asthma is such a fickle disease and you never know when a trigger is going to cause your airways to react and tighten up. The reason that was given for not having a reliever with them was that the weather was ok and they would not be affected by any triggers despite saying in the next breath last time they were up they had to climb stairs and were in a really bad way after this- there was no guarantee that there would be no stairs this time round.

I think the main thing that got me was that being involved in AUKCAR and being a member of the PPI group you would think that those in the group are those who are proactive about their condition, wanting to set a good example and manage their condition to the best of their ability. To do this one of the key things is to have all your medications with you. It may end up that you don’t need it, but its better having it all with you and not require it then need your reliever and not have it. Asthma and our airways don’t stop and think that they better not tighten up and become symptomatic because your don’t have your inhaler. They are going to do what they want when they want.

I am still reeling over it and so glad that there were no members of the children and young persons group there because they are impressionable and may think that because someone older than them is not carrying their reliever with them so they don’t need to either. I feel really passionately that if you are part of a group and forward facing attending groups where there are a mix of different professions who are putting a lot of time, dedication and effort into a career of helping those with asthma then you need to be acting in a responsible manner and not bragging that you don’t carry a reliever inhaler because what researchers or clinicians are going to want to help asthmatics when those they are consulting with are not being sensible and taking their condition seriously.

Sick leave- what do you do??

Being on sick leave seems to be an all too common occurrence for me. It is never just a day either its weeks and weeks which feels like months and months (well sometimes it is months).

Often people say to me they would love to be off for as long as I have been off and it must have been nice. I hate saying its not and Im glad to be back but it is the truth. I hate being off as I do love my job. I think when you are at work and having a really hard, difficult day the idea of being off is just great, and then when you have had a week of annual leave that has gone by in just a flash you long for more time off to have a good recharge so when someone is off for a extended time you think it would be bliss but to me it is far from that.

Time stands still, it feels like it moves backwards, hours drag and minutes feel like hours. It is ok when I am in hospital and unwell because you feel so awful- time stands still in a different manner, you want time to speed up so you will be out the attack and find it easier to breathe but it doesn’t speed up, again it takes forever but once out the initial terrifying difficulty to breathe has passed you are left feeling exhausted and time just passes as you dose on and off requiring medication in-between but time just passes in a haze so you really have no idea about time or what day it is. This bit is ok as you really do feel ill and just curl up.

With asthma the tricky bit is when you feel better but you feel better when doing nothing and I mean doing nothing. Lying on a bed you are totally fine, breathing is good, heart rate is comfy, pain is at a low and all seems ok with the world until you need the toilet, shower, something to drink and thats it. Your lungs tighten up, heart rate sky rockets and pain rips through your lungs and you think to yourself all you did was stand up and take a few steps but feel like you have just run a marathon. This is when time is at an ultimate go slow. There is only so much lying on your bed or sitting on the sofa you can do. There is only so much day time TV or on demand TV and films you can watch.

They say rest is good for you, enforced rest is even better for you but even harder especially when you know that any movement you do will cause you to feel pain and go backwards. It is frustrating and difficult. Many of my friends with asthma and other lung diseases know exactly what it is like and share my frustrations. For me it makes getting back to work difficult because doing nothing you feel invincible but when do you know that you are ok to go back to work?? It is a hard call and loving work means you want to go back as soon as possible.

I find my self very fortunate as I have my patient and public involvement stuff which I can occupy myself with when having to be inactive and resting. It keeps my brain really active and i feel like I am doing something good with my down time. It is important and it stops me dwelling on what I imagine I should be doing. I would torment myself otherwise. Also writing this blog and the various support groups I am in helps me through it all but I know others don’t have that which is why I am so passionate about PPI because of the impact it has had on me. I am sure I would have long given up the prospect of even returning to work or do anything had I not had a such positive experience being involved in research. It has made the time that stands still move on and passes and soon it is the day to return to work.

How do I know when I am ready to go back to work properly and actually ready rather than my brain is super bored and I need to do something? This time it has taken me longer to go back to work which Im not ecstatic about however over the past week I have noticed how many people say how much better I am looking and how my breathing appears and sounds. This is the first time in a very long time that people have said positive things about how I look or appear compared with how I look like death warmed up and sound like I have swallowed a whistle. It think this is down to a combination of things, 1 having a better steroid regime which is preventing the dip I kept having late on in the day, 2 switching medical team to a new consultant, asthma nurse etc and having confidence in this team and knowing that things are getting looked into compared to before, and lastly I have been off longer but then I was kept longer in hospital and was reliant on less nebulisers when I was discharged than when I am admitted to the Royal and get discharged often before I can even walk the length of the room and often just bounce back in meaning I am not great and more stress on my body. So there is a number of different factors this time that have changed.

The last few days have been a great test for me to see how I really am doing. Going in to work to help with registrar peritoneal dialysis teaching which I really enjoyed and felt like I was useful. I must say I do love teaching but not just the teaching about something but instilling in the teaching and training how important the patient is and not just to get them better but respecting their choice and understanding what is important to them. I feel in renal this sometimes can be over looked especially when a patient chooses peritoneal dialysis as the work up can be longer and if they suddenly decline and require dialysis without a second thought a temporary line is stuck in them and then thats them on haemodialysis.

Today was also another great check to see how the lungs were doing. I attended a collider to discuss ‘Decision Support for Asthma’ which was industry partners, researchers, clinicians as well as patients to brain storm ways to help those with asthma. It was a fascinating meeting and what was clear was the passion of all those that attended to help people with asthma. Ideas were not the same in the groups but the patient and patient choice was at the centre. As a patient it was great to share what is useful and what is not useful to living with asthma. I will write a different post about this as I hope it will have positive outcomes and lead to new innovations.  I was tired by the end of the day but a good tired and not too chesty either despite the really hot weather and humidity (which I think will only get worse as the weekend goes on!!).

 

So fingers crossed when I see the GP on Wednesday she gives me the thumbs up to go back to work and some normality can return to my life!!!

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!!)

#aukcarASM15

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The last few days I have been down in Manchester at the Annual Scientific Meeting for the Asthma UK Centre for Applied Research. It was a great few days. all kicked off by an entertaining dinner with the centre director and post grad and network co-ordinator who learnt the value of Twitter and what you can do with it. It was with delight that one member found they were my top media tweet and wanted to retain this title for the whole meeting. (no one really knew what top media tweet was but battle had commenced).

I was particularly excited about the meeting for two main reasons because I was co presenting about @SPEAKAsthma and also I was going to hear Prof Iain Pavord talk who is in my eyes the asthma guru and brought Bronchial Thermoplasty to the UK. Listening to him talk was amazing. It gave me a renewed sense of hope that there were different treatments coming out for asthma, namely Mepolizumab. His different views on the use of oral steroids was interesting as I had always thought steroids would treat all aspects of asthma but now I know otherwise. It does make me question the role of oral steroids for myself. I have never been convinced that they are as good as medics make out. It will be interesting when I am next in clinic brining this information I have learned. Prof Pavord also knows my consultant and spoke highly of her. I think highly of her but that is because she has helped me so much, but when you get the top guy in asthma saying your consultant is good, she must be good.

Our talk about @SPEAKAsthma and a new project was great and we were able to show our recruitment video and a flipagram that we put together. I did get a bit nervous and stumbled over my words sometimes but I think the PPI Research Fellow I was presenting with caught my bad bits and saved me.

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Otherwise the meeting was good. It was different this year from last year in Oxford. I was very new last year and really didnt know many people but this year I have had the chance to work with a lot of people and met them over the year. This year we also had a big PPI presence as there were 7 of us attending. The great thing about the meeting and the centre is that they value PPI input so much and are really inclusive of it. There is no one who didnt make us feel welcome. Even at breakfast and  other meals they would stop conversation and welcome us and speak to us wanting out advice and input on their various projects.

There is so much to talk about in the meeting and way too much to put down on paper but my titter feed sums up the meeting as I tweeted throughout it. If you want to see go to @just_TUX to see my tweets.

The second day was really frustrating for me. It was really interesting but I couldn’t contribute as much as I wanted because I was up most of the night coughing and feeling really tight chested. It was horrible. I was determined not to let people know I didnt feel great but by the end of the day I felt exhausted and the effort of breathing was so much. I am really annoyed at myself for pushing through and not just excusing myself and resting somewhere. I have this bad mentality where I won’t let my health stop me doing things at any cost. By the end of the day at the train station on the way home I didnt have the energy to hide how I felt anymore and had to just sit on a bench and try catch my breathe. Once on the train it was impossible I felt slumped and had my neb. I must have appeared so anti social but I was spent and on empty. It was such a shame as the end of the last meeting was such a high and the train journey on the way back was full of chatting and discussing different things we were going to be doing in the near future.

I am really looking forward to the next few months. There have been lots of different projects that people want PPI input for and also the SPEAKAsthma group to which is exciting as they are still really new so the group is only just starting out but it bodes well if people are keen to speak with them and also have a group set up in London too!!! The future is looking good for SPEAKAsthma and PPI!!!

What is PPI?

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In my blog I have spoken a lot about PPI or Patient and Public Involvement but what does it mean?

When hearing the term PPI (apologies for the big assumption) most people will automatically think “payment protection insurance”. I must admit I first thought this when I first heard the term PPI. You hear and read about  PPI everywhere and commonly associated with the annoying phone calls you get from unknown numbers between 5:30 and 6:00pm at night.

If you were to google the term PPI you would need to scroll through 4 pages of sites all about payment protection insurance bar one suggestion which on the fourth page is for another sort of PPI- this one being a proton pump inhibitor to help with acid reflux. One the fifth page right at the top I finally found a result talking about another kind of PPI. The kind of PPI I do.

The PPI I do and am involved in is nothing to do with payments, money or insurance but is Patient and Public Involvement in research. It is a source of information which can give the opportunity to researchers to have their project stand out from the rest.

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(I am not an academic so forgive me if I am generalising too much)

Researchers will often have a project in mind that they wish to do, or a question they want answered that can be achieved by conducting research, but if the research is to be really worthwhile, it needs to influence those they want it to – patients, families and health professionals. Having patients or public involved helps to ensure that the research question, and entire research process remains focused on what is important to people with asthma and therefore the results obtained can hopefully make an impact or health improvement in the person’s life.

It is important for researchers to remember that PPI is not about participant recruitment to a study.

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If like me you can’t take part in clinical trials or you just don’t want to be a guinea pig but want to do something worthwhile which could potentially make a difference to the life of someone with asthma then PPI could be for you.

Visit http://www.aukcar.ac.uk to see what the research priorities of the centre are and what sort of research is happening. On the page ‘How to get involved’ there is an email you can use to send in your interest and join the PPI group which is just about one of the largest PPI groups worldwide for asthma research (I think- but I may be wrong, it is certainly up there)

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I get emailed every now and again by either the research fellow co-ordinating all the PPI volunteers or by the PPI lead for AUKCAR with various different requests for my advice. Some examples of the things you may get asked to do are:

Lay Summary Reviews: most research proposals need to have a lay summary – – a summary written in plain English rather than using more complex English and technical terms which are foreign to just about everyone other then those involved in research. Carrying out a lay summary review is to read it and comment where something may not be clear, or you are not sure of what something means, or abbreviations have been used with no explanation of what they are. They are often in word documents so using the comment tool is good to show bits you’re not sure of. All responses from PPI members are collated by staff at the Centre and fed back to the researcher.

Patient Advisory Group: where you will be involved in the research process right from the start. I am in a few of these and they commonly have perhaps 2 face to face meetings a year with the researchers in the study and then email correspondence or teleconference calls. Again you are asked to comment on lay summaries, patient information sheets, or are even asked about any ethical issues you perhaps might think there may be. I have only got this far in any Patient Advisory Groups I am in just now but as the research progresses I will give my opinion on the results and other bits I am not quite sure of yet!!

PhD Review Panel: in AUKCAR there are a number of PhD students and PhD projects that are put forward to try and win a grant and get funded. You can sit on a review panel and read the various PhD proposals and again comment on bits you think make sense but most importantly if they have a good plan for using PPI throughout the piece of research. You make comments by email first, then a face to face meeting or teleconference with others on the panel takes place to discuss what you all thought and then this is fed back by the PPI Lead for the centre.

Patient Information Sheets: information in these is so important – they explain a research study to people who have to decide whether to take part in the research. Having a lay person (non medical or academic) review the information sheets to ensure they are understandable to those recruited and make sense explaining every part of the research and how the participant is going to be affected and what is expected from them. I have done a few of these and have found the researchers are so grateful for any comments that make them easier to understand.

Help design a piece of research: Opportunities arise where you may be able to help in designing the study right from the start and what the aim is and the best way of sourcing the information the researcher wants. I am involved in something like this just now where I am helping to work out different ways of getting the information we want and the various methods we can use for it.

Publish an article yourself: I have recently written a short article for the British Medical Journal for a patient series called ‘What is you patient thinking?’ which is meant to be a learning tool for Drs to make their practice better. Naturally I have written mine about attending Accident and Emergency having an acute asthma attack. I have written it highlighting ways which it could perhaps be made easier and a more pleasant experience.

There is a very wide range of things you can be involved in and in a variety of different ways. You can do as much or as little as you want. Emails come out with requests but you don’t need to do all of them unless you want to.

The team in AUKCAR are fantastic and really supportive. If you’re not sure about something they are always there to give you answers to any queries you have. My first ever thing I did as a PPI volunteer I was really nervous about what was expected and what happens if what I write is wrong- but nothing you write is wrong. It is all helpful suggestions. My comments have varied from comments all over the pages and I felt I had gone over the top but then others where I didn’t have any comments. The researchers don’t find out who has said what unless you respond to them directly then they see from your email but they never discuss what you have written or question you about it.

You may probably guess I really enjoy being part of AUKCAR and being a PPI Volunteer so I would definitely urge anyone who might be interested to get in touch and give it a go. If you decide it’s not something you want to do after trying it then that’s ok – it’s not for everyone.

Big thank you to PPI Lead reading this for me first!

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(I do want to say this post is just my own and am not being asked to write it and not gaining anything from it if people do decide to join the PPI Group at AUKCAR.)

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.

World Asthma Day 2015

Tomorrow is World Asthma Day aka WAD!

This time last year I didnt think too much about it and never even thought I would be where I am today. I was focused on my Step Dad’s 60th birthday which happened to fall on WAD. I have never really done much for WAD. However last year for some reason I was compelled to put together a photo montage of how asthma effects me and what I can still do despite having asthma.

So much has changed both good and bad. It has been a huge rollercoaster. Sometimes I just want to jump off and other times I want to stay on it and never get off. Starting with the bad. My asthma has been really bad. My lung function is at an all time low, I find I am symptomatic a lot of the time, I am taking more medication than my 88 year old Granny and the rest of my family put together and this still doesn’t give me the quality of life I once had. I will however still fight for the life I want. I will not give up- mainly because I am too stubborn and won’t let my asthma win no matter how hard it tries!! (this is one of my downfalls as I fight it too hard and often don’t get help early enough- I am working on that though!!)

So for WAD 2015 I have put together another photo montage called “My Asthma Year”

So onto the GOOD!!

This year from WAD 2014 to WAD 2015 has also been awesome. What started as a bit of awareness making the video snowballed into something I would never have even considered possible. I am now part of the Centre Management Committee for the Asthma UK Centre for Applied Research (www.aukcar.ac.uk ). I am also a Patient and Public Involvement Lead (PPI) for Children and Young People within AUKCAR. It has still not quite sunk in the role I have been given and how much my work is appreciated by those in the centre.

I started off by being invited for coffee with the PPI Leader from the centre to discuss ways I could become involved and help. My particular interest is children and young people as my life as a young adult has been so effected by asthma, it would be great to use my experiences to help researchers help other asthmatics.

So from a chat in May 2014 to May 2015 and I am in the position I am in is totally brilliant and one I would never have expected. I remember at the start not really knowing exactly what I was doing back in May last year. The thought of reviewing a lay summary terrified me a bit but after the first few I found it fascinating and really enjoyed doing it. I was not sure how many I should be doing etc but as and when the requests came through if I had time I would sit and read the summaries and comment. Because I found I really enjoyed it the time aspect never bothered me. Many who I would meet with from the centre commented on how much I was starting to do. I was not aware of this and didnt see it as a lot. From a personal point of view the Centre came to me at the perfect time as I was reducing my hours at work so reviewing summaries and patient information sheets filled in the time nicely. It also gave me something productive to do when waiting for my nebulisers to finish.

Later that year I was invited to the 1st Annual Scientific Meeting in Oxford with the AUKCAR and found myself speaking infront of all who attended. My public speaking was not the best and I was very nervous. Breaking down in tears was not my best moment but ironically it got the point across to many just how serious asthma can be and how much it can effect peoples lives.

Since joining AUKCAR I am so proud of what I have been able to contribute and in so many different ways from speaking at the meeting, taking part in teleconference calls, reviewing lay summaries, reviewing participant information sheets and ethics sheets, being part of 2 patient advisory groups, reviewing PhD proposals, helping students who are under taking PhD’s in the asthma field, helping to start our Children and Young Peoples PPI focus group, being part of a focus group surrounding the volunteer database which is one of the aims of AUKCAR to set up. The list is never ending on all the different opportunities I have been given as a result of joining AUKCAR. I am so grateful for it and those who are involved. I will never be able to express in words how much of a positive impact AUKCAR has had on me.

I am not doing anything particular for WAD. I will be thinking of all those who have died from asthma. Particularly the 7 friends I had to have all died as a result of asthma or complications such as cardiac arrest due to an asthma attack.

I will leave you with the post I made a year ago about WAD 2014

https://totallyanonymousasthma.wordpress.com/wp-admin/post.php?post=888&action=edit