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).

 

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!!)

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.

Educating the next generation of researchers!

Last week has been really busy but really busy in a good way!!!

I had a day which was a bit of an AUKCAR day- starting with a PPI teleconference, moving to discussions about the Children and Young Person’s Group before finishing with a Webinar for the PhD students. A busy day but lots accomplished!

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The Children and Young Persons group is really taking shape and we have a number of enthusiastic young people contributing. Our one hurdle just now is trying to work out a name which can be catchy but still gets the point of the group across. My imagination is very limited so coming up with a name or acronym is defeating me. I am sure something will come up between those of us involved in the group (I hope!!). Back a year ago when I was first asked to be involved in the CYP I never imagined it would be as it is. I am not sure what I was expecting but having had no experience in helping to run a group like this I really didnt know what I would be in for- all I knew was I wanted to involve young people in research for asthma after my teenage years have been effected so much by it. In time we hope to have the group spread to different areas of the UK so all asthma researchers can have access to young people for input into their research.

For me one of the highlights of the day was taking part in the webinar for the PhD students- the next generation of asthma researchers. A slightly odd experience having never taken part in a webinar or any sort of video conferencing- but after a while it was not too bad and I got used to the changing screens and seeing yourself on a screen too!!

When I first joined AUKCAR I made an assumption that everyone involved in the centre and its research would know all about asthma, inhalers and the different medications. I guess I was shocked when I sat down to dinner with one of the students to discover they didnt have much of a knowledge about asthma. As the conversation moved on I found out that just because students were doing a PhD involving asthma did not mean they were a medic or from a medical background. There are nurses, engineers and a variety of other backgrounds which would never expose many of them to asthma and the physiology behind it. There is something overwhelming in a way that people who are not always connected to asthma want to make a difference to the lives of those with asthma. I don’t know how to describe the feeling- part of me questions it thinking “why asthma..its only asthma after all” and it is far from one of the diseases which is “sexy” in the research world where there is a huge amount more funding. It is just asthma- but just asthma effects so many people in so many different ways that it does need more recognition and investigation into why it can be such a life threatening disease.

After discovering the variety of backgrounds and having chats with the students I decided to suggest the possibility of doing some asthma education and speaking to the PhD students about living with asthma and how it can effect daily life. Im not sure if i expected anything to come of the suggestion but it was great to find out that a webinar was planned between 3 different universities to learn about asthma and also hear our experiences of living with it. For the first time it was done I was pleased with how it went. Having 2 PPI members there swell as one of the researchers gave the students different perspectives of asthma and how it is not the same in everyone. Myself has the slightly more uncontrolled asthma whereas the other member has relatively mild asthma so his experience is very different from my own.

I hope the students got a lot out of it. I tend to look back rather critically at how I have done when speaking and did feel I could have improved and made it a bit clearer should I need to do it again but we did have good discussion and the students all had questions.

Sitting in at the end hearing the students update each other on how their respective PhD’s are going was good. Some are much more engaged in PPI than others and it was good to see where there is a gap for PPI in the some of their projects but more so I was able to see the potential for where our CYP group could give input to help the students.

There has been lots going on but all good and keeps me busy!!

Small steps will make big changes.

Today has been one of those days where bits and pieces happened and the end result should make a huge difference.

Today was a particularly bad day breathing wise. I knew I was starting late for work as I was due time back but nebbing hourly from 5am was not the way I planned to spend my lie in!! So not a good start. The day physically didn’t change much for me. It almost felt suffocating at times. It was hard but I got through the day and remarkably in the last hour my breathing has eased up….40mg of prednisilone will do that I guess and some painkillers!! But thats not the point of the this post.

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So I was saying lots of little things happened today which were all totally unlinked and all events/ emails/ letters were from different people who have no interaction at all but everything happened during the course of today (I am superstitious and since my Uncle died odd things have happened and I just wonder if he is responsible for today….dont laugh. I used to laugh at people who had thoughts like that until it happened to me).

First off I read the first of many emails regarding the volunteer stuff I do from AUKCAR. The email meant a lot. Much more than the person who sent it knows. I comment on PhD’s students participant information letters to make sure they are appropriate and could be understood by those targeted. I really enjoy doing this. But the student emailed one of the PPI team about the feedback. This team member then emailed to say how much my help was appreciated etc. It was such a positive email and really made me happy. I love doing what I do and even if I got no feedback about what I did I would still do it. Being able to do something I enjoy and knowing it is helping someone else is so rewarding. Much more than fundraising. So this was the first thing.

I then read another email about a Long Term Conditions report which I spoke to a member of staff about and although I don’t want to mix what I do with my outside life and work together I think the results from the report are really pertinent especially given our work is dealing with patients who also have a long term condition.

It was also great to see our Young Patients Group starting to evolve and dates being set for focus groups but not much to say about that.

The last thing I guess which is what role everything from today together is that when I got home from work to open my post I had a letter from the Royal Infirmary. I hate getting letters from them because it is either for appointments with respiratory or cardiology, occupational health or charge nurse doing promoting attendance to work meeting. To my relief it was none of the previous. Instead it was from the consultant researcher leading the PACT study in Edinburgh. Basically putting together care plans for people who have a long term condition who end up presenting acutely unwell to A and E. This care plan is meant to aid Drs treating people. To me this is a massive thing. When I lived in England I had one and it was followed very closely, since moving back to Scotland I have had nothing and this has made some A and E visits very difficult. The care plan along with all the important things like how to treat me, a little bit about my asthma, my medication, allergies etc it also has a bit about patient preferences which is almost the most important part. For example 2 things on mine which can make an admission very stressful is Drs trying to guess what your saying and also them fighting for an artery for a blood gas and not listening. My right wrist a vein runs over the artery so always yields a venous sample. My left wrist is so hard and scarred that the needle bounces off the artery so brachial ABG’s or femoral stabs need to be done. Most Drs won’t do brachial because of clot risk so it can sometimes be distressing trying to make them understand. Having an ABG is not like having a normal blood test where I don’t care where they poke about- it doesn’t hurt so they can suit themselves.

So this was a huge positive thing to know I have this care plan and to know it is now on the hospital computer system so whenever I am admitted the Drs will have easy access to it. That was not the only good thing to come in this letter.

The researcher also mentioned that he had spoken to my consultant who wants to meet up the three of us to go more in depth about the best emergency treatment but also the researcher mentioned about my involvement with AUKCAR. I had not told con about this not because I was hiding it but with him being new I just had not had time in appointments. So he wants to meet to discuss it further to as he is interested in it. Which is great especially after I had a rather cool reception about it from people previously involved in my asthma care.

I feel that all these things today are little steps all completely separate but all so closely linked to one common cause and that is to make asthma control better, better self management and ultimately better patient experience and a better patient/ asthmatic. It just so happened it all happened today but I was glad of it. It made me even more focused on wanting to continue doing what I do with AUKCAR and grab all opportunities with both hands. In the past people have been cautious and not wanting me to do too much as I am a volunteer but I love doing it and being affected by asthma so much, to know that there are people out there trying to make a difference for people like me. If I can help researcher to understand better, or give advice, or just show where the weaknesses are in asthma it makes it so worthwhile. I don’t really even have to force myself to sit down and reply to emails or comment on abstracts or information leaflets, it just comes and is enjoyable.

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Although today has been a real struggle with my asthma mentally it has been really good with little bits of things filtering through. It is hard not to get down when every breath feels like you are breathing through a tight straw with a close peg on your nose but people taking the time to thank you for what you do means so much.

There is a lot coming up in the next few months conference calls, cross party group meetings at the Scottish Parliament, focus groups, PPI sessions and I need to write a couple of things to. So loads to keep me busy especially on these long nights where sleep is hampered by predsomnia!

 

Guest Blog from a great friend Dr Steph!!

This guest blog is from Steph. I met Steph originally on Asthma UK’s online forum. We didn’t know who each other were. I was Olive86 and Steph was disco dolly or DD for short if I remember correctly!!! We chatted through the forum for a few years and then with the creation of Facebook we chatted more and eventually met about 8 years ago perhaps. I was still living down in Winchester and Steph was at uni in Birmingham. I drove up to meet her and we had a great day. It was like we had known each other for ages. We talked and talked and had many laughs. It was lovely to meet her as we were both facing the same problems and on sub cut Bricanyl so it was great to meet her. Over the years distance has kept us apart but staying in touch online is second best!!

Steph has achieved so much despite her asthma. Her most recent achievement is that she had just completed her PhD and is now a Dr. Many congratulations!!

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For me Steph is probably the one person who I can identify with the most in asthma terms. She has had a similar journey to me with asthma and had to deal with being abroad and going into hospital. Deal with university and asthma etc etc.

Here is Steph’s guest blog!!!

How long have you had asthma and how did you get diagnosed with asthma?

I first had problems back in November 2005 so scarily nine years ago now. I was 17 at the time and I had just come back from a trip to Paris to celebrate a friend’s 18th birthday. On the following Monday when I was going back to school, I told mum I didn’t feel very well and she told me I had been burning the candle at both ends and to go to the walk-in centre at lunchtime if I still felt rough. By lunchtime I felt terrible so went to be seen. I had never had any chest problems previously. After waiting for what seemed like forever, I saw a nurse who took one look at me, gave me my first nebuliser and called an ambulance to take me to A & E. After being there most of the afternoon, I was sent home with a blue and brown inhaler and a spacer. On the Wednesday of that week, I went back to school but in my first lesson, my biology teacher took me out of the room and called my year head to send me home as I still couldn’t breathe. My mum collected me and took me to our GP where the receptionist reluctantly allowed me to be seen. Once again I was sent to A & E, given some nebs and sent home later that evening with some prednisolone. On the Friday morning, I received a phone call from the hospital asthma nurse following things up as I had had 2 admissions n as many days. She was not happy with how I sounded on the phone and asked me to ring the GP surgery asking for a home visit. Both of my parents were out at work, it was the beginning of November and was cold and pouring with rain. I rang the surgery and was told I was not elderly or terminally ill so did not qualify for a home visit and there were no appointments left so to ring back on Monday. I relayed this conversation to the hospital asthma nurse when she rang back and I was told to go back to A & E and not leave until she had seen me. I had my doubts but got a taxi to the hospital and give the nurse her due, was met by the asthma nurse on arrival, saw the chest consultant and was admitted for 4 nights. So not really a positive first experience but I would say it took a year of monthly hospital admissions before brittle asthma was finally decided on as a diagnosis and that it was not just dysfunctional breathing.

How did you feel when you got diagnosed with asthma and has this had a big impact on your life, and friends and family?

I was scared. The first night my parents left me in hospital, I cried most of the night. It didn’t help that at 17 I still felt like a child but because I was over 16 I was admitted to an adult ward which was full of old ladies. I have since learned that old ladies can be very funny! Once I had got to grips with it and done my research I went through a phase of being angry and asking why me? Then I became the stubborn person I am today. Yes I have it and yes it can be annoying but in a weird way it makes me what I am. I don’t think I would be where I am today if it wasn’t for my asthma as it has made me more determined to achieve what I set out to achieve and beat it. I would also never have met a lot of the people I have met over the years both in person and through online websites like Asthma UK. I know my mum was very upset, especially when a couple of years after diagnosis I spent a lot of time in hospital and in intensive care when I should have been out enjoying student life. I have since found out that she in some way felt responsible and blamed herself as it is a mum’s job to protect their child and this was out of her control. My friends were supportive at first and came to vsit me in hospital but as time went on Steph being in hospital became the norm and they didn’t bother. It was interesting as the year after I first had problems (in September 2006) I left home and moved 100 miles away to university. My uni friends never knew anyone other than the Steph with asthma. I was lucky in that when I was at uni I made 2 very close friends who were more than happy to come to hospital with me. One studied nursing and the other physiotherapy so the A & E staff at the local hospital use to refer to us as the nurse, the physio and the patient.

Many people look at chronic diseases such as asthma with such negativity but has having asthma brought any positives to your life or changed the way you view your life?

Definitely, as I alluded to before, it has made me more determined. I refuse to be beaten by it. When I was first diagnosed, I went to chat forums and facebook groups looking for support especially from other young people and you are right a lot of it is negative with some sort of competition of who can be more ill. I don’t understand it. You have to live with what you have got and be thankful for the good days. I have found some very close friends as a result of the diagnosis, for instance I would not be writing this if it wasn’t for it.

You have had experience of different healthcare systems from being abroad- do you think one is better than the other and did the treatment differ either positively or negatively?

As you say in September 2008, when my chest was at its worse, I went to New Zealand for 10 months as part of my degree course. I literally turned up with a suitcase full of meds, syringes, needles and sub-cut insertion sets with about 5 pairs of spare underwear! New Zealand has a healthcare system where hospital admissions and appointments are free but you have to pay for GP care (about £12.50 per visit) and ambulance trips. Having said that, the ambulance service was run by St John (like here) as a charity and if you became a supporter of them for the equivalent of £17 per year you were entitled to free ambulance trips anywhere in the country. I never realised you had to pay for ambulances until I received a bill for £25 after a trip from the GP to A & E. I guess it is just something I have always taken for granted. Perscriptions were much cheaper £2.50 per item but then they only allowed 3 repeats before you had to pay for another GP appointment.

I think the internet made my trip easier as my chest consultant here wrote to someone at the local hospital before I arrived. Most of the medical team were English anyway. Some of my meds had to be changed because they were not manufactured in NZ and sub cut bricanyl was from another planet! I was first admitted to hospital about 5 days after I arrived as I picked up a cold on the plane. The staff were lovely but I was very upset as I had to be quarantined and barrier nursed as they were terrified of me bringing MRSA into the country. However once the swabs came back as negative I was allowed onto the ward. Hospital staff definitely had fewer patients to look after so more time to care. The city I was in also had a respiratory psychologist. My consultant up at the North West Lung Centre had always talked about referring me to one to talk about the anger / frustration side of my asthma but it had never been feasible as I lived in Birmingham at the time. That was very helpful and something I believe there should be more of in the UK.

Have you always been compliant with asthma medication? It’s a big issue with young people not complying. If you have ever not complied why and what happened to make you change?

I have to say 99 % of the time I have been. When I was firdt diagnosed I was in hospital enough when I was complying that the thought of not doing so didn’t cross my mind. Since having bronchial thermoplasty 3 years ago my chest and quality of life have improved dramatically. Now and again I don’t comply but that is generally when the GP thinks I should start or increase my prednisolone and I don’t agree. My GP aires very much on the side of caution so I tend to bypass them now and talk to the chest team at the hospital directly.

Sadly we know someone that has died of asthma- has this changed your view of your own asthma and how you live your life?

It always makes me stop and think twice. Too many people do not recognise / acknowledge the seriousness of asthma. I think because now it is just part of me and people around me are very blasé that it always comes as a shock when you hear about people dying.

Everyone wants a cure for asthma but is this and should it be the top priority in asthma research??

I don’t know. I mean a cure would be brilliant but I think it is unachievable as there are so many levels / types of asthma. Personally, I think it is best to use what money there is in to something that can be achieved but has equally as big an impact. The stop asthma deaths campaign is one way of doing this. Having said that, I was lucky enough to have a treatment called bronchial thermoplasty three years ago which came as a result of recent asthma research and for me was funded by the lst remaining bit of a research grant. That has completely changed my life and dramatically reduced the number of admissions I have had allowing me to complete a PhD. It was interesting to be part of it especially because my career is in science research so I saw it from the other side.

Patients and the public should always be the focus of academic research do you think if we as asthmatics were incorporated more in the research process there would be more understanding about what the actual needs are of asthmatics rather than a researchers perceived perception?

Yes because what we see and what they see are not the same. Patients and researchers have different priorities and if they do not agree at all then the research is a waste of time.

Do you have any parting words of wisdom or advice to offer to anyone who feels that having asthma is just the end of the world and its all doom and gloom?

I genuinely believe my stroppy lungs have made me the person I am today. I did well at my degree because I had time on my hands when I was in hospital all the time to study. It has made me more determined to beat it and succeed. If I can do this, anyone can as I am nothing special. You just have to try and take a positive attitude, which is difficult at times. I always tell myself it could be worse. I have met some great people as a result of asthma and made some good friends. As much as possible you just have to take it in your stride and multitasking with a neb in your mouth because you are running late just becomes a normal routine!

Last one! What is your greatest achievement?

That is hard. I think there are a few which are all related as my asthma could have stopped me so many times but going to live in New Zealand for 10 months, getting a first in my degree and then doing a PhD are all up there. The other one is completing my Gold level Duke of Edinburugh Award. I had to do the expedition part 3 times before I finally completed it and at one point had a trip in an air ambulance but as I say never give up. There is always a funny story to tell.