AUKCAR ASM NRS Talk

It is hard to believe that I have been involved in the Asthma UK Centre for Applied Research for 5 years now. Time has gone so quickly. I have had some amazing experiences as a result fo being involved, met some wonderful people and made friendships that I hope will last for a long time yet. I say this often but AUKCAR has been life saving and life changing. I have no clue what I would be doing if I had not had that chance meeting that set about a series of events which has put me where I am now.

The annual scientific meeting held in London this year was a celebration of all the hard work and research that has been done to help benefit those living with asthma or affected by asthma. Asthma UK originally funded the centre for 5 years so we had to reapply for further funding for another 5 year period. It was announced during the meeting that we have been awarded funding for the next 5 years which is incredible.

I love the ASM’s because it is a chance to meet people face to face. The centre is virtual so a lot of the work is done via email or teleconference so seeing the people you work alongside is not a common occurrence. It also gives us the chance to meet other members of the patient and public involvement (PPI) group.

 

This years meeting I was speaking twice and presented a poster too. For the first time I was presenting about an academic bit of work on my own which I was a little nervous about but once I got up there it was not too bad (also the team who were part of the work were in the audience so had to get it right). The poster was also related to the piece of work too- evaluating the impact of PPI!!!

The final talk I was giving was when I fell to pieces a little. Not quite as bad as 5 years ago when i was in tears and the audience were in tears, it was only me this time. It was the talk I gave along with 2 friends and PPI colleagues at the NHS Research Scotland Annual Conference. To summarise the talk was originally celebrating the NHS at 70 and we gave our accounts of how medicine has changed with the NHS. Allison started speaking about her experience fo asthma with her mother, then Elisabeth spoke about growing up with the NHS and then I spoke about the NHS today and changes in medications. (I am going to write a full blog post dedicated to our talk in the next week or so).

When I originally gave the talk in October I had not long changed consultant, had started new medication for my asthma and things were looking up. This is part of my original talk:

“I have been in and out of ICU and HDU more times than I can count, it has almost become routine when admitted to hospital now. Once stable I would then be moved to the ward to further stabilise before being ready to go home, once I home I would then begin the arduous task of weaning down my oral prednisolone dose to my maintenance. This I now hope is a thing of the past. I am 4 months into a trial of mepolizumab and it has had so many positive effects. I have not been admitted to hospital since April and am on the lowest dose of oral prednisolone I have been on for as long as I can remember. It has been truly life changing. Advances like this have given not just me but given others their life back. If it was not for research, mepolizumab would not be an option and I would still be on the rollercoaster I was on before”.

It was only just before I was going to give the talk at the ASM when I realised how much has changed in such a short space of time. Never would I have thought  when I first wrote that talk that life would have changed so much.

I have been back in hospital and intensive care, I have not got back down to a lower dose of prednisolone and I am no longer working. I am still on the mepolizumab injections as it has reduced my eosinophil count. It highlights just how fickle asthma can be and how you can never predict what the future will hold.

In a way I think maybe it is a good thing that when giving the talk at the ASM I was able to tell the audience what I had said back in October and then tell them how life has changed in a matter of months. No one unless you’re living with it can really see the unpredictable nature of asthma and how debilitating it can be. Even with the best plans and management it can still rip the carpet out from under your feet. The emotion I showed on stage is the emotion I try and keep buried down because as it does is remind me of what I am not able to do. PPI has given me so many positives but there is still the longing for the life you want or the life you once had.

Having a platform such as the AUKCAR ASM or the NRS gives the opportunity to show everyone what is often hidden behind closed doors when it comes to asthma. It is so misunderstood and if people who struggle to deal with controlling it don’t speak up then the perceptions of asthma will never change. I hope that some of what I do will help make a change and help researchers, Dr’s, nurses, other health care providers and the general public about asthma and what it is really like.

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.

img_4237

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.

IMG_4731

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.

IMG_0613

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.

img_3997

(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!!)

Asthma a rare disease??

On the 29th February there was an awareness day for rare diseases. Asthma is one of the most common rare diseases out there. Its rare in its own very special way. It is not in the same category as some of the obscure disease like EB or Battens which are rare due to so few people suffering from them.

You may think asthma is not rare.

One in twelve people suffer from it, every day 3 people die from it, every hour someone is admitted to hospital having a severe asthma attack…so how can it be rare.

I class asthma as rare because despite the prevalence of asthma it is the most complex and poorly understood condition around. Academics spend careers trying to find a cure for asthma, or a new medication to help in the management of asthma but they often never fulfil those ambitions. It is not through lack of trying but due to a lack of funding and awareness of what actually is asthma and what can it do to people.

The common misconception is that a blue inhaler is all you need and all will go away but this is so wrong. Attitudes need to change. Despite the huge numbers of people who suffer from asthma there is the least amount of funding for it. In the research world it is not a sexy enough condition to warrant huge funding grants yet it can be just as devastating as someone who has cancer. The difference being that with cancer there is the option of surgery, chemo or radiation but for asthma there is none of these things. There is nothing that could potentially make it go away. I am not trivialising cancer as it too is devastating but from the outside there are some options to some patients but for asthma it is all about management not cure.

For many with asthma fortunately they will go large periods of their life without much bother from their asthma but there are those who fight each day, have a strict regime if medication to keep well, have to avoid certain things and adapt their lives to fit their asthma.

What is it that needs to happen to make asthma be noticed, and the general public take note and start fundraising, or insititues allocate as much money to asthma research as they do cancer, stroke or cardiac issues.

I long for the day where people stop saying I know someone with asthma they just have a blue inhaler and thats all you need. I get frustrated with people who drown themselves in perfume and then say they are feel asthmatic, they have no idea but sadly until even those with asthma take steps things are never going to change and how can we expect them to.

I guess this is why I think asthma is rare because it is so complex and so poorly understood. I submerse myself in all information I can find yet I still don’t fully understand my condition- a condition I have had for 28 years.

 

In other news I have been back to work now and managing ok. I feel exhausted at the end of the day but enjoying being back around my colleagues and having a purpose to my day again. I have found it tough but onwards and upwards and I am sure all will be ok.

Next week there is the Cross Party Group meeting at the Scottish Parliament for Asthma which will be good to go to. It will be nice to see people from Asthma UK again as well as listen to speakers from the FARR Institute and listen to Aziz from AUKCAR and Sam from Asthma UK. I am looking forward to seeing the MacDonald’s again. I met them at the end of last year after their daughter tragically died from an asthma attack in her sleep leaving her wee boy in their house. he is now looked after by her parents his grandparents. I am looking forward to seeing them although I did find it hard last time listening to their story about Lydia and her asthma attacks as they are so like my own. I am not sure how I will be at the CPG as still coming to terms with the attacks from the start of this year but I must be strong and think I am still here and they don’t need to see me upset.

Anyway here is a photo from today with a wee chappy who never fails to make me smile!!!

 

IMG_1567

#aukcarASM15

IMG_0653

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.

IMG_0613

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?

Slide1

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.

Slide2

 

(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.

Slide3

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)

Slide4

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!

Slide2

(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

cropped-aukcartitle_nostrapline_300dpi.png

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.