BLF-AUK Respiratory Action Plan Meeting

I was recently at the first event since the partnership of  Asthma UK and the British Lung Foundation. It was fantastic to see BLF colleagues with the Asthma UK logo on their name badges alongside the BLF logo. Also being welcomed with open arms too was lovely. I was a bit daunted to attend this event as I didnt know anyone however as soon as I walked into the room I spotted a familiar face Dave from Chest Heart and Stroke Scotland who had attended a PPI event I was teaching at. As more people arrived I then saw Toni (a fellow patient) who I got to attend the Garden Party with which was good too but actually by the end of day I was able to speak easily to so many people and have come away part of a whats app group.

The table I was on turned out to be one full of severe asthmatics (not done on purpose all by chance). As we got talking it was amazing speaking to others who have had the exact same experiences as I have and the way you feel as well. I think the biggest thing for me was that you would not be able to tell that any of us were seriously unwell and that 2 of us have had far too many intensive care stays to count.

One thing that did come up several times in conversation was around the term severe asthma and what it means. We all came to the conclusion that severe asthma is almost a totally different condition than asthma is but this is for another blog post.

The main point of the meeting was to discuss certain points of the Respiratory Care Action Plan which has been drafted by the Scottish Government however they have one huge fundamental flaw. They did NOT consult with those who have or are affected by respiratory conditions, so the BLF-AUK held a meeting to discuss key points which need patient in put on. In the room there was a mix of people with different respiratory conditions.

One part of the meeting that I found frustrating was that it became a bit of a platform for people to spout their complaints about their GP and how they never get to see their GP or if they want to see their GP they have to wait. This is just the way it is now but moaning at events like this is not going to get anything changed. The GP system is not ideal but there are so many who are not using the GP correctly like with A&E so that others miss out and suffer as a result but a consultation on a action plan is not the time to complain.

Asthma I think and I may be wrong is unique amount respiratory conditions because unlike other conditions which mainly affect the older generation asthma can affect anyone young or old. In the room everyone was much older than those with asthma. The other thing that made it unique is that unlike COPD asthma is not really a progressive disease. It goes through phases of being controlled and uncontrolled but generally won’t continue to get worse as you get older limiting your ability to function. So the needs of those with asthma are very different to those with a constrictive airways disease compared to a revisable airways disease. I think those with asthma in the room were able to speak up and give a good balanced argument for our opinions and why us as asthmatics think as we do.

I did get very frustrated when asking a few questions to be interrupted by those with COPD who clearly has no understanding of any other condition outside their own so would butt in with their opinion and how I was wrong. The one that got me really riled up was discussing spirometry. I asked what they meant by spirometry to the facilitator as it was a broad term and encompasses a number of different tests. The context of this question was on the background of spirometry being used in primary care. This person jumped in and would not let me explain what I meant  and told me that spirometry is blowing into the machine when you sit in the glass box. I was wanting to know if they meant basic lung function by doing speak flow, or FEV1 or more advanced lung function tests given that the context is primary care. I was just really annoyed that some people were not given the chance to ask their questions or finish asking their questions without people butting in. The whole purpose of consultations and being involved patients and the public is to listen to each other and accept each others views wether you agree with them or not particularly when it comes to a variety of different conditions especially when we are all experts of our OWN condition but not in other peoples conditions.

The whole day was really good and I really hope the BLF-AUK got a lot of helpful information to take back to the government about their action plan and hopefully make some changes now that patients have been consulted. I look forward to seeing the result and to see the finished Respiratory Action Plan. If anyone is interested in giving their own feedback on the action plan they can do that here .

 

 

2019 the good, the bad & the ugly

With the new year fast approaching I like to reflect back on how the year has been and what I have achieved. Last years post can be found here .

My thought for 2019 was:

2019 is going to be a great year, a year to focus on achieving the best health I can and enjoy life again. There will be hiccups, there will be hospital admissions but rather than feeling defeated by this I will accept them as part of my life and ongoing management!

Well I guess some of it is correct but I am pretty sure when I wrote that I did not think I would be in the position I am now in, it has not been all bad though!

I have focused on trying to improve my health. I made decisions and took steps I never thought I would to really put my body first. I gave up working in the hospital to try and get my breathing better. To start with this was going well but after a few very traumatic asthma attacks my life has been changed and Ia have been left with more permanent damage and had to come of biologic treatment as a result. I am working hard though to over come this. I am determined I will get my independence back and be able to walk without a stick. I may not get the feeling back in my leg but I can work with this. Along with work I decided to not travel to various things mainly lacrosse because I felt I would not be supported and I would not be able to prioritise myself.

I have continued coaching lacrosse at schools, universities and with Scotland. I gave up working with the senior team and focus on working with the goalkeepers in the U19 set up which has been so rewarding. The U19 also brought me all sorts of things back from their World Cup which I was gutted I couldn’t go to- mainly due to poor communication from the seniors letting me think something different but then it turned out I was in hospital too for it. I am looking forward to this year and being back with the U19 Scotland team. I am still coaching at schools and picked up a 2nd team at Edinburgh University so now coach the 2nd’s and the 3rd’s. I am loving coaching and find it so rewarding.

Research and advocacy as always has been a big part of the year. In fact travelling to a huge advocacy conference in Dallas was life changing. The HealtheVoices event was something else. I loved every minute of it. I made so many friends and realised that I am not alone in what I am trying to achieve. Speaking about your own experiences and how to navigate living life with a chronic health condition is beneficial for others. You can make changes even if they are small. I will be forever grateful for my time in Dallas. I also had other events where I was presenting including some pharmacuetical internal events, wider NHS events where I made some great friends and we are going to try and pull off some great things this year, went to Madrid for the European Respiratory Society Congress where I had a poster accepted for the patient day, presented a poster at the AUKCAR ASM as well as some other virtual events too. It has been busy and I think will only get busier this year. I have been able to write for a pharma company who have a website called Life Effects where I can write articles about my experience of living with severe asthma. Off the back of HealtheVoices I became a PEARLS Ambassador through the work of Rick Guidotti which has been great and have got to know some of the other ambassadors too.  So far I have several events planned for 2020 that I am speaking at and I am sure there will be more as the year goes on.

The biggest part of this year has been getting Ghillie. Ghillie has been life changing. I cannot believe that I got him in April. I cant imagine life without him now. He is achieving so much and is always there for me. I will do a post just for him to update on how he is and what he is doing. I never thought he would be as good as he is now. He can be a total monkey but then when I am not feeling good or am struggling he is there to comfort me and help me with things. Topping the year off with him being a feature in a newspaper article all about what his role is as my assistance dog.

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What are my hopes and aspirations for 2020. I want to continue as I have with 2019. Focus on my health and do what I need to do to ensure it can be the best it can be. I am sure like with 2019 there will be hospital admissions, hard times, illness, frustrations but I can over come them. I just need to be patient and work my way through things. I want to grow my toolbox of skills that I can use to better myself and use my experiences to help others. My friendships this year have suffered a lot- mainly because I have struggled so much and been so unwell that I cant attend things so I end up bailing on friends and they get bored with me always cancelling so don’t invite me to things anymore. I want to try and change this and make a real effort to go to things. I value my friendships so much and don’t want to lose anymore.

2020 is going to be a year of positivity, focusing on finding my best self and feeling content with life.

I hope everyone has a fantastic 2020.

Live the life you want to live.

#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!!!

A mutual understanding with Asthma UK

A while ago I posted about how angry and disgruntled I was with Asthma UK. They had taken the decision to close their offices in Scotland, Wales and Northern Ireland. To say I went off the deep end would be a small under statement. I felt hurt as it was the Asthma UK Scotland office who effectively without knowing changed my life around. You can read my blog post here 

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But now I feel I need to post with where things are now. The offices have closed but after the weekend in Manchester and meeting with people from Asthma UK at various different events over the past few weeks it has given me the opportunity to speak to them about how I feel and where everything is going.

I think and I hope Asthma UK believe we have a mutual understanding. I am very upset that the office had to shut but now understand why they had to do it. The economic climate in the UK is not favourable for charities particularly small charities like Asthma UK. I had not appreciated the cost in running a charity and having offices in outlying countries. It is extortionate. A charity which generates on £9 million a year for a condition/ disease which effects 1 in 10 people is shocking and there is no wonder why they struggle to do all they want for asthma and those who have asthma. Until yesterday I never realised the KICK Asthma weekend I went on when I was younger would cost £20K just to put that on. These are figures you don’t see. I took Kick Asthma for granted- I got so much out of it but never appreciated the work that went into it and the running cost.

The opportunity to speak to various different people from the charity was really beneficial. They reassured me that Scotland would not be forgotten about and they will look after Scotland. My understanding is that there were more than just me who were upset but I hope that the energies of those who are upset can be used to the positive and be the people in Scotland to raise the profile of asthma and Asthma UK. I want to make sure that Asthma UK know what is happening in Scotland and in doing so this may generate more income and enable Asthma UK to have an office in Scotland again.

What we need to be aware of is that there is nothing to be gained by being annoyed or upset at what has happened as it is now fact but use this and change the situation to the good. Put asthma on the map and it may put Asthma UK back in Scotland with added income and resource. By understanding the whys I can clearly see there was a massive gap in resources- I am still sad and always will be but I can’t let this sadness cause a rift between me and Asthma UK and therefore be detrimental to all aspects of asthma awareness etc as I want to continue in doing all I do and maintain a good relationship with the charity.

I am very grateful for having the opportunity to speak to various members of the charity over the last few weeks and hope others can join with me in Scotland and continue to support Asthma UK.

Patient and Public Involvement aka PPI

Our Patient and Public Involvement (PPI) Forum lead gave a short course on what PPI is and how to use it in research as well as the benefits of using PPI which is often a forgotten entity in the research process. I was observing this course and chipping in periodically along with one of the other PPI leads which I think benefited the participants as they could see just how PPI can be used from our point of view and what we actually do.

During the morning I realised I have talked about my involvement with the AUK Centre for Applied Research (AUKCAR) but never really gone into detail about what I do and what PPI is. Many people look at me quizzically when I say I do PPI as they assume is it payment protection insurance which it is not!!!

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PPI is not a way of recruiting participants for your research. PPI is there to be involved in your research. We can help determine research questions and if they are appropriate for the specific condition. In my case Asthma. As part of PPI I review research summaries which have been written for the lay person- to weed out those scientific terms which creep in and suggest plain english terms to be used instead. I have also provided feedback on patient information sheets to make sure the participants will full understand all aspects of the research and the requirements of them. These are often the bit parts you can be involved in.

As part of PPI I also sit on a patient advisory group for a study which we provide feedback throughout the whole research process from applying for ethics approval to the dissemination of the results 3 years later.

The list is almost endless about all the different things I can do and it is very difficult to say no to certain things. It is not feasible to help out on all the projects which you are asked to do. This is particularly hard when it is an area so close to your heart. Asthma has effected me throughout my life, dictated not only what I do but sometimes what my family and friends do as well. Having the opportunity to be part of something which will perhaps make a difference and mean change can be made in asthma care, treatment, management resulting in no one having to go through some of the stuff I have been through. Knowing that this could potentially happen is such a rewarding feeling.

Today the lead mentioned how I do do a lot and need to be reined in sometimes but being involved in PPI has given me something so valuable and came at a time where I thought my career was potentially over, I was in a pretty bad place mentally and could see no way out. To me asthma had taken control of my life and I could find no way out of it. To some extent it still does have control over what I do and when I do it but I can change this from a negative to a positive experience. Being part of PPI gives me a purpose. When I am not working I am not sitting wondering what I would normally be doing but I can sit and read research or see what is going on in the centre. The advantage doing PPI with the centre is that much of it is done in my own time. During the sleepless nights when I am needing my nebuliser I can do some PPI work and read lay summaries and comment on them. I don’t need to try and fill the time with watching rubbish on the TV.

In the centre I am not the only one effected by asthma. All the PPI leads have different reasons for working with the centre and have had their life impacted by asthma in some way wether they have it, family members have it, family members have sadly died from it, there are a huge variety of reasons, but for me I am just now being effected by it and sharing  my experiences I am living through just now as a result of asthma.

If I could do more I probably would. Often people ask if there is an incentive for being part of PPI and there is a huge incentive for me. Its about making change. Without the centre change would not happen and PPI can help by ensuring that the research done is the most applicable research for people with asthma and those effected by it.

I love doing it. It has given me a purpose again since having to give up so much. I am not sure what I would be doing if I was not involved in the centre. Probably wallowing in self pity about how unfair life is.

Today I also met a researcher involved in renal research so hopefully I will be able to bring some of my PPI experience to work and help the researchers there use PPI effectively!

The isolation of chronic illness

Someone I follow on Instagram summed up exactly how I feel my asthma has made me. I used to be almost the opposite of myself. I always want to think that chronic illness does not define who I am but then this is not  true at all. I am my chronic illness and I have made myself that way particularly recently. I have been able to embrace having my asthma control my life and have put it too good use. I shave become involved in so much with the new applied research centre for asthma and also the work I do with Asthma UK. If I didnt have the difficult asthma I wouldn’t do any of this.

As much as I appear out going and have a laugh I am almost the polar opposite of who I used to be. 10 years ago I was the one who was out all the time, socialising with friends and had a carefree life. I would be out with friends and not care or worry about getting back to my flat to make sure I had medication etc. I would never hesitate about spending the night on a friends sofa if it was too late to go home. The thought of this now fills me with huge anxieties as I wouldn’t have my inhalers, pills and would worry about keeping people up with my coughing etc.

The app time hop I love to hate. I love it because it brings memories of a carefree life but then I hate t because it is not my life anymore and I envy that life. It would be fantastic to have such a life again.

The person I follow on Instagram I originally started following for the fitness and recipes they post but recently they shared about their friends. It is something I can relate with. Just now I spend a lot of time trying to keep myself well and out of hospital. In doing that it means friends come by the way side. Most of my friends I find I have met them through the work I do with Asthma UK or through support groups and therefore a lot of them are online. I have met them all just about but it means that you can’t just pop round and relax and watch a film, it usually means arranging Skype calls or FaceTime. These friends are ones who you can always rely on. They know exactly how you feel and the right things to say whereas the closest others friends come to knowing how you feel is when they have a cold and even then having a cold is nothing like fighting for your life to breathe!!

It is sad the way illness can change your life so much and leave you with so little control.

I often feel now that I live to work and thats about it. For just now I just want to throw myself into trying to make a change for people with asthma.

This week with my birthday it makes memories creep up and highlight all the bad things that comes with an unstable condition. Not only my birthday but I am also speaking tomorrow about asthma which is filling me with weird emotions as it is bringing up memories from some really hospital admissions. Last time I spoke in public about asthma I ended in tears and made a lot of the audience cry and I really don’t want the same to happen again!

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.