Asthma Rule 1: ALWAYS have your reliever with you.

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

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

So what happened??

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

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

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

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

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

Sick leave- what do you do??

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

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

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

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

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

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

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

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

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

 

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

2016 Round Up!

2016 has been a pretty awful year. There have been highs but there has also been some mega low points so like much of the world I am looking forward to 2017 and to it being better than this year has been.

January, I guess the start of the year set it off, after being admitted to the intensive care unit on Hogmanay with my asthma. This really took it out of me as for the first time I could not work out what went wrong and why I went downhill so quickly. It still haunts me to this day about how it all went off so quickly.

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Then after being discharged too early (i am one who will go as soon as possible but this time I wasn’t and knew I shouldn’t be going home but the Dr’s were not listening!). So two weeks after discharge I got readmitted and spent my 30th birthday on the respiratory ward which I know all to well. So I guess its not too bad as I knew who everyone is etc but its not the best feeling.

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Photo from on my 30th birthday. At this point I didnt think the year could get much worse. I was off work so long and really worried about being able to keep working. January was one long fight and I was so glad so see the back of it.

February was a better month. Spending time with my nephew making pancakes and also being part of the Scotland squad. Despite the my last hospital admission occurring mid Scotland training weekend I was still able to trial for Home Internationals in Guildford Surrey later in the year so it gave me focus. Having that focus was a huge thing for me and a real positive in what seemed like a whole heap of negativity.

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March was my nephews 3rd birthday- so always a good time to spend with the family celebrating and eating cake!!! I also went to the Scottish Parliament again in March with Asthma UK for the cross party group on Asthma. This was the last one held and there has not been another one this year which is a bit sad as Scotland really is leading the way with asthma research and big data research looking at whole populations in databases rather than bit parts. Hopefully we will have another CPG again soon. At the end of march I also moved house. I moved from my 1 bed first floor flat to a 2 bed top floor flat just round the corner from where I used to live. It was the best move ever!!!

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April- this was the start of the year becoming good. The hard work I put in paid off. My asthma was semi under control. Or as under control as I could get it. But I was able to travel to Guildford Surrey as part of the Scotland B squad for Home Internationals playing England, Wales and Ireland. It was a dream since I was at school to play for Scotland, pull that blue or white shirt on and sing Scotland the Brave in front of a crowd. I got to do it and it may not be much to some people but it was the most awesome feeling. I enjoyed it so much and was really proud to have been selected.

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My club team also won the final four weekend of the Mixed clubs tournament which was great!

May- there was more lacrosse. Capital won the MacRobert Mixed Tournament, Capital won Community Engagement Club of the Year along with Edinburgh City for the after school club we run. I was also elected as Development Director for the Lacrosse Scotland Board. It was a big month lacrosse wise but also it saw world asthma day which was a much quieter affair this year than previous days. Softball and the Laxadaisicals started back up for the season!! Softball was great to keep team spirit up while there was not so much Lacrosse going.

June was a huge month and one of the most positive months of the year. Mainly because I was so busy but also because through March, April and May I had been trying not to do so much to enable my lungs to be good for what was going to hit them. We started off with a trip to Italy for my Mum’s 60th Birthday. It was amazing. A big villa in the mountains with all the family just about. My older step sister and her kids couldn’t make it due to school and the fact my youngest nephew was not born yet!!!

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June continued to be an awesome month as I travelled to London to join some americans who were over from America. We formed a team called International Inferno. The girls were from Florida Southern University and their coach Kara who had just won the NCAA Div 2 Championship. I joined them in London for a weekend and had a great laugh getting to know them and playing lacrosse with them. To say I was slightly nervous was an under statement as they have come off the back of a championship win and I am a goalkeeper who has been in the goal about 6 months!!!

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After London it was a quick turn around and the travelled to Prague to join the team there for the Prague Cup. Prague was a great experience. We were second in the tournament but it was so much more than just coming second. Have made some great friends and hopefully will see them all again soon.

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(two missing from this photo of players!)

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Coach Kara Reber in the middle in yellow!!!

So as you can see June was a huge month!! July was a month for rest and recovery and thats what I did. I really feel my body took a hammering from the constant go go go but I wouldn’t change it. It was the really good pick me up and also the sort of finale to my lacrosse playing days. I was ambitious after Home Internationals but could not resist the chance to go and play in Prague etc. Im so glad I did it. Going with your gut it a great thing!

August started off with a trip to London to speak about living with severe asthma. This was a great opportunity as I was not speaking to your average people about asthma but I was speaking to the creme de la creme of asthma researchers and Drs. I was speaking to Drs who I have read about and wanted to be under because of their expertise in asthma. The likes of Ian Pavord and Adel Mansur. I was speaking to them to give them advice of what it is like to live with severe asthma, and the trials of living on steroids. It was a great experience and I ended up coming back with a new area of interest. I joined a group of paediatricians to collaborate with them on a bid proposal for a piece of research. It was amazing being part of something from the birth of it and the idea of it to the grant application. Also this was one of the first times I was a co-applicant on a bid. Something new for me (after this year not my last either!!). My high of the start of the month was short lived as not long after my return from London I ended up having a severe attack and ending up going to intensive care for a few days and then a further week or so in hospital. I kind of pushed to get out of hospital as had big plans in September which I was not prepared to give up on (I did end up not carrying out my plans but more of that to come). This admission was tough. Access was a nightmare, they couldn’t get an IV in. I ended up asking one of my colleagues from renal to come and try cannulate me but not even they could manage it which is so unusual- renal nurses get blood out of anyone!!! It took a while to get off the IV aminophylline as well. But we got there and I got home.

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This is a photo I like..I used my oxygen to blow up a frog balloon thing my nephew got on a magazine. I wasn’t able to blow it up (obviously- don’t think I could even now) but thought it was a funny photo!!!

September started off with me making difficult decisions. I pushed to get out of hospital because I had big meetings coming up. I had been invited by Astra Zeneca to come down and talk at their annual meeting which they were hosting in London ahead of the European Respiratory Society Conference. I went down to this and gave my talk. I made some amazing friends, one who has had their life changed by new drugs out there and the other who has asthma like me and can totally understand how it feels. Its not often you get someone who just understands but he does, and then you have someone who proves your life can be changed by drugs which has renewed my hope in the one day there will be a drug I can get which will change my life around.

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After the meeting I was meant to stay in London and meet up with Jess a fellow brittle asthmatic who I have spoken to for about 10 years after meeting on the asthma UK forum. I was also meant to be going to a meeting with the European Respiratory Society as a patient expert on a project they are involved in and finally I was also invited to the House of Commons for a drinks reception held by asthma UK but I decided to head home on the Friday night and miss these meetings as I just wasn’t well enough. I didnt get to meet Jess either but we both agreed there would be other times!! I also had clinic in September. I am lucky in that I can contact my consultant should I need to in-between clinic times so clinic is just a touch base time. Nothing was changed and we are just going to keep going as we are and tackle each blip as they come!!!

September I also took on the position of assistant manager (AssMan) of the Scotland Senior Womens Lacrosse team. I was so thankful for this. Since not playing I have really wanted to still be involved in Lacrosse but not knowing how, so by being asked to be AssMan I was thrilled. I have found I can still use some of my sports science background and help out with the exercise testing of the players and help with the goal keepers too. I really enjoy the job and so thankful for it.

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September ended with another new experience. I was interviewed for a book which I am being featured in. The book’s working title is Healthcare Hero’s and I am being featured because of the stuff I do for research and with lacrosse in spite of my asthma. But as I said to them at the end of the interview if I didnt do what I do I would be in a big depression and have nothing to live for. Its simple as that.

October was a quiet month. I didnt feel great most of it to be honest. I was back and forth to the Dr a fair bit and emailing my consultant to. I was not really bad but not great. That horrible in between time. I managed to hold out most of the month until my GP decided enough was enough and got me in to be seen. It was a useful admission as it meant we sorted out my main relief from the chronic lung pain I have from all the exacerbations but also got rid of this viral thing I had. It was pretty uneventful other than all the junior Drs were terrified of me as I sounded awful but not awful for me!!!

November was a fairly big month too. We had the annual scientific meeting for the Asthma UK Centre for Applied Research. This was hosted in Edinburgh so I got to stay at home but it was great to meet more PPI members who I have not met before. It was an interesting meeting and also amazing all the research which is going on. Later in November my best friend got married. My little brother payed the pipes. It was held in Edinburgh Zoo and it was an amazing day!! I loved every minute of it. I just wish I could have stayed to the end but my chest was just not up for it and I had to leave. But Jenni looked amazing and both her and Rich looked so happy.

Later my brother also got married up in Loch Tay. They had fantastic weather and could not have asked for a better day. Slightly chilly but clear, no wind and no rain. What more could you want.

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Me and my nephew at my brothers wedding.

December to where we are now. December brought the meeting of Jess and her beautiful and wonderful canine partner Xenna. We have waited 10 years to meet but once we met it was like we had always known each other. Poor Xenna didnt get fed till late one night because we were just chatting and didnt realise the time till she started whining at us. She got fed very soon after that don’t worry!!!

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(me making Jess look like she has a ta!!) It was so great to meet you!!! One of the strangest things happened though. When we were wanting around the museum Xenna kept staring at me and walking over to me. We think this was because she was picking up I wasn’t well and was getting chesty. She did it several times.

Sadly not long after Jess left I was admitted to hospital with a chest infection. Maybe Xenna was right and could detect I had a bad chest and was brewing something. Even though she is not trained for that. It was very odd. The admission was fairly uneventful and I picked up ok but I was determined to get out and be ok for Christmas and be with my family. It was slightly stressful as didnt let everyone know I was admitted as it was rather routine but news got out. I just want to get on with admissions quietly and my own way unless I am critically ill and going to intensive care or high dependancy then I let everyone know as I would be AWOL otherwise!!!

Christmas came and went. A small quiet Christmas up north with my mum, step dad and youngest brother. It was a lovely time. The weather was awful- very windy, snowy, raining and cold but it meant we could stay in by the fire and reads books and chat.

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Today was back to work and face reality before Hogmanay and we welcome in 2017. Here hoping 2017 is a better year health wise than 2016 has been. I have to be honest it has been a long slog and really hard work. There have been some awesome highs but some really bad moments and some movements I never want to go through again.

Motto for 2016 has been Dum Spiro Spero

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Pharmaceutically Enhanced!

I read an article recently which challenged my thoughts on modern medicine and how I have become totally reliant on pharmaceutical products. I am so thankful for all the developments in medicine and where medication is now.

Everyday I take a concoction of medication and far too many for someone in their late twenties almost 30. I take a range of bronchodilators, inhaled corticosteroids, anti leukotriene receptors, oral steroids, antihistamines, xanthines, proton pump inhibitors, anti emetics, bone protection, painkillers, muscle relaxants, antidepressants and hormones. These all range from inhalers, nebulisers, nasal sprays, tablets, injections. This is just on a regular basis but add in emergency treatment of IM and IVs as well. I wonder what has happened to me since it was just 2 inhalers- a preventer and reliever. I never even knew about all these there medications and it has only been recently I have really understood what they all do, how they help me and what benefits I get from them.

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I am constantly working with my team to work out ways of reducing the numbers of medications and that I am only taking what I need to take and what actually does something. There are times when I just wonder why I take everything everyday when I can sometimes find I get no benefit at all, but on the good days I can really see how they help. I can go from gasping for breath to be able to breathe freely with the help of my medication regime and all the different things.

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As great as this all is I can’t help but think where would I be if we did not have these great advances in medication. If we were all still relying on asthma cigarettes, powders or the later developed atomiser and then pocket atomiser- something about the size of a portable nebuliser rather than a pocket inhaler. Im not sure I or many others would be able to do half of what I do without the medications we now have. Im pretty sure I would be in quite a bad way and stuck indoors all the time. It is a thought that doesn’t bare thinking about.

So many of us, myself included complain constantly about the amount of medication they take and the side effects. My list of medication is half medication for my asthma and half to treat the side effects of the medication I take for my asthma mainly the prednisilone. Reflecting now as much as I hate my medication I am hugely indebted to the researchers and pharmacy companies who develop these new medications for all different diseases. Selfishly I want them to focus on developing medication to help conditions like asthma which don’t get the funding as I desperately want to have the life I used to even though I am ever so grateful for the life I have now it would just be great to turn back time to the good old days!

I guess the article I read just highlighted to me how fortunate I am and we are that we are here in the modern world compared to time before.

For now just need to keep on….

Shaking, Rattling and Rolling!!!

#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!!!

#aworldthatcanbreathe

Today I met Ron and Linda MacDonald, the parents of Lydia MacDonald who tragically died from an asthma attack in June this year. I remember reading about this in the newspapers as Lydia’s wee boy was left in her flat for a few days after she died. At the time of reading I thought ‘not another one’. Another one being another person who has died as a result of an asthma attack. I felt for her parents at the time as no parent should loose their children.

Rather than sit back and do nothing, Lydia’s parents have set off on a campaign to both raise the profile of asthma and how dangerous it can be but also to fundraise for vital research which is chronically under funded. I am totally in awe of their strength, as in a few shorts months they have achieved so much awareness and want to continue with this.

I am so glad to have met Lydia’s parents- I was a bit apprehensive as asthma is a subject very close to my heart and one I can get very upset about as feel it has taken so much away from me. I was not sure if I would be able to keep my emotions in check. Part of me thought I shouldn’t show my emotions as I am still here. I still have my family- parents, brothers, sister, grandparents, nephew and niece whereas Lydia’s parent don’t have her and her son doesn’t have a mum. It is heart breaking thinking that. To know that someone so full of life had it all taken away.

So many things that both parents said resonated with me a few of them are:

  • there are so many different types of asthma
  • no one really gets how bad asthma can be not even friends
  • despite having bad asthma wanting independance
  • unless you have suffered an asthma attack you have no way of knowing how terrifying it really is
  • its not just asthma
  • asthma kills far too many people

These are just a few things but these are the things which people need to read and take on board to stop more families going through what Lydia’s family have and are going through.

I briefly had a look at the page called Lydia MacDonald Tribute fund for Asthma Research UK on Facebook and already the plans and party in the future appears to be gaining momentum and there are a huge number of comments in support. I will endeavour to support or help in anyway I can to raise funds or awareness about asthma. Lydia’s parents mentioned about getting all the communities together to one huge event with everyone working together as it is all for the same cause.

A phrase I heard several times from Lydia’s mother was that she just wants to to help make it a world where you can breathe. I am not sure if this the tagline so to speak for what they are doing but I have used it as a hashtag in my twitter when tweeting and also on various other social media sites to raise the profile of what Lydia’s parents are doing for people with asthma. The hashtag is:

#aworldthatcanbreathe

What is PPI?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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