Getting involved in Patient and Public Involvement

I promised so many friends I would email you about how to get involved in research and do the stuff I do but I haven’t emailed any of you so figured I would do a post about it instead and then everyone can see it and everyone can get involved!!

The centre I am part of is the Asthma UK Centre for Applied Research or AUKCAR for short.

What is it?? It is a virtual centre (there is no base or one place it is) made up of a number of different universities across the UK. There is a range of researchers from PhD students, early career researchers to fully fledged Professors etc.

What is applied research?? Rather than basic science where they look to develop new drugs or gene therapy etc. Applied research looks to solve practical problems and everyday issues so for the centre they are looking to: encourage good asthma control,  maximising benefits of treatment and reducing asthma attacks and asthma deaths.

What is Patient and Public Involvement (PPI) ? PPI is working alongside researchers as colleagues to ensure the research they are doing is applicable to those with the condition. You are not being part of a study doing PPI but advising on all stages of research from grant applications, to lay summary and then the spreading the results of the research. By doing PPI we can contribute to research in a fundamental way which many researchers cant. We can tell them what it is like to live with asthma or live/care for someone who has asthma. We can give researchers this knowledge and help them ensure their research is going to benefit those with asthma rather than research being done for research sake.

Do I have to do training to learn how to be involved in PPI? No. There is no formal training for PPI. The members in AUKCAR are more than happy to give you advice on how to go about tasks and often meeting other PPI group members is the best way to learn and get help. Thats what I did with another PPI member who I met. She was able to show meter advice about what to do. Even though our views don’t always match and can be polar opposites it is our opinions and this is what the researchers are needing.

What type of things do you have to do? There is a huge variety of things you can do. It can be face to face in focus groups, discussion groups or interviews. The majority of things are done virtually in the form of reviewing lay summaries, patient information sheets or questionnaires. There is also the chance to be a co-applicant for research grants, be part of a steering group for a particular study. There is also the chance to review PhD proposals and abstract submissions for the annual scientific meeting. As well as all this there is opportunities to spend time with the SPEAK Asthma group (Children and Young Persons Group) depending on your areas of interest. As part of the PPI group AUKCAR attend Science Festivals, go to schools who may host an asthma event, work with engineers designing tools to make asthma management that bit easier. The important thing to remember is that with PPI there is no right or wrong answer, you have been asked to give your feedback so give your feedback- you will find that most of the other PPI members have the same views and input. Don’t be worried about asking for help or guidance.

How do I find out about opportunities? You get an email request from AUKCAR saying that there has been a request for PPI and then there is a brief description of the study and what PPI input is required. Sometimes there is loads happening and there are lots of requests but equally there is some periods of tie when you won’t hear anything. There will always be a deadline on when feedback is required- this can sometimes be quite short from the time of finding out about the request- but this is because the research world moves fairly quickly with some things but then fairly slowly with other things!

How much time do I have to spend? You can spend as little or as much time as you like. I spend a lot of time being involved in different things the centre are doing but that is because I really enjoy it and it fills my time when I am not able to work. If there are requests that come through and you don’t fancy it then that is ok just don’t reply there is no pressure to do everything.

How much does it cost if I attend a face to face meeting? If you are requested to attend a face to face meeting for an AUKCAR event your travel and accommodation will be provided by AUKCAR, if you attend a focus group the researchers will give you expenses for travel and sometimes a voucher for your time. You shouldn’t ever be out of pocket for doing PPI.

have other difficulties other than my asthma, can I still get involved? Yes you can still be involved. There are lots of people who don’t just have asthma and their input is valued just as much as someone who only has asthma or are the parent or carer of asthma. There is also the possibility to get things sent out on paper if you struggle using the internet. We have people in the group who don’t like using computers and equally some who are blind or deaf too and they give just as much input as those who don’t. Anyone can do PPI and join the PPI group.

If you are keen to get involved follow this link for AUKCAR PPI page and sign up. Or if you speak to me before then I can let them know and get you linked with the centre. You can also read more about the PPI group in this link too!!

I have written so many times about how much fun I have had with AUKCAR and beyond that. It has given me so many opportunities that I struggle to remember everything I do but the highlights are:

  • Published in the BMJ: Just Relax Concentrate on your Breathing
  • Featured as one of the healthcare heroes with Havas Lynx and their book about Healthcare Heroes
  • Speaker at the NHS Scotland Research Annual Conference with Allison Worth about “Working together to drive great research
  • Spoke at the AUKCAR annual scientific meeting about what the PPI group have been doing and what SPEAK Asthma has also been doing
  • Speaker at Asthma UK about what life is like with severe asthma for their severe asthma funding call
  • Speaker with Asthma UK about how big data can benefit those with asthma
  • Lecture about PPI for the PPI Module of the Clinical Trials Masters at Edinburgh University
  • Speaker at NHS Research Nurses open day
  • Member of Patient Advisory Group for European Lung Foundation
  • Member of Astra Zeneca’s Patient Partnership Programme and speaker
  • Research and Policy Volunteer with Asthma UK
  • Mentor for PPI Champions in NHS Lothian

This is the some of the highlights from being involved in research. I have loved every minute of it and really do enjoy doing it. My catch phrase which I use often and sometimes its sounds cheesy but being involved in research really has made a positive from a really sh***y or negative situation. There is so much more I have done and more I am doing in the future so if you do want to find out more please just fire me a message or email me. Even if you don’t have asthma but want to get involved in research I can point you in the direction of what might suit you and who can best help.

Do we have a warped sense of illness?

My last post about World Asthma Day I spoke about the barriers to reducing asthma deaths and the behaviour of asthmatics when they are in difficulty. I like to think I am a proactive asthmatic and will recognise when I am not well and when I am struggling but Im not sure I am. Its not that I am being pig headed and deliberately avoiding seeking medical help but I jus don’t realise how unwell I am.

Speaking to someone recently who read the WAD post said I do a few of the things that I commented that others do and push my limits and don’t seek help early. I had a phone call from the respiratory nurse at my GP surgery who also commented about how unwell I was when I attended there before being admitted. I didnt actually think I was that unwell but clearly I was.

This got me thinking about my own and other people who have asthma like I do, perception of illness and when are we really unwell and when are we just a little bit. I did pose this question to a couple of groups I am in and was reassured by some of the answers as it meant I wasn’t the only one who was thinking as I do. The post I made was this:

Does anyone find they have a warped sense of being ill. Someone recently said that I leave it too late to get help or I should stay off work earlier than I do. But for me when I feel a little under the weather I don’t bother staying off work and part of me wonders if because I have been in ICU and so many times close to dying from asthma that I base feeling ill on knowing what the worse feels like.

I don’t know how I can change my perspective on being ill if that makes sense. I understand that if I am short of breath at work my colleagues are going to worry but to me being a bit puffed is normal and nothing new.

I don’t really know what I’m trying to say but I’m clinging to my job by the skin of my teeth and almost save being off sick for when I’m in hospital if that makes sense. I worried that I’m doing the wrong thing. It doesn’t help that pred at a silly high dose is messing my brain up and feeling totally insecure with my asthma because of the bad care I have had over the past few years which has only just come to light!!”

Many others commented that they could have written that post themselves as they feel exactly the same. When you have been very ill needing ICU on so many occasions your interpretation of being unwell changes. I relate a lot of how I feel to how I felt when I have been in ICU and use this as feeling the worst I could so when I just feel a bit chesty I really don’t think it is that bad because I know how much worse I could be. Its difficult as well when it is a gradual decline you adjust to it and pace yourself and then there is always that wait for the higher dose of steroids to kick in.

Part of me wonders if we compensate more than we should. In all honesty I didnt think I was that unwell but then speaking to the respiratory nurse who told me I  was very acute and was hell bent on driving myself to the hospital I wonder how much my judgement was impaired from hypoxia and having been in status asthmaticus (as they seem to call it) for a prolonged time. It is so hard to tell when is the right time to give up and either not go in to work or go and get medical help when you have experience of being so much sicker and you really don’t feel that unwell.

I know this is not just asthmatics that feel this but anyone with a long term condition will always compare themselves to how they have felt at their worst and their worst they may not have felt yet and therefore “worst” changes and so you go to work when others may not feel like you should be at work or should be doing something. Its a really tough balance when your health is so unstable. I know I do it and many others to but when you have a wheeze more that 75% of the time you learn to block it out because it is one of the most irritating noises ever!! So by blocking it out you are also blocking out how you feel and how bad your chest is.

I still need to work out a plan or way to alter my way of thinking and my view on illness and being able to evaluate how unwell I am and if I am well enough to go to work or if I need to stay at home- but even as I write this I am thinking but then I will be off work on more days as there are often nights when I have been up all night with my chest and breathing and its still not great but I feel I should be in work and would probably go to work. I guess its hard to change when you know your health isn’t going to change that much- although fingers crossed seeing a new consultant who seems to be good will help and that I have appointments already with cardiology, allergy/immunology, psychology and physiotherapy can only be a good thing. My GP and resp nurse at the GP surgery have also managed to sort it that I will always get admitted to the hospital my consultant is based at which means no more A&E unless its between 9pm and 8am!!

World Asthma Day

On Tuesday 1st May is was World Asthma Day. I normally do something during the day, or post a video etc raising awareness about asthma, how serious it is, how  critically under funded research into asthma is. This year however I didnt do anything I just wasn’t well enough, my chest was far from good and lacked any ability to concentrate and focus on anything, mainly due to the high doses of prednisilone which leave you with a mind that has been put in a blender and constantly mixing your thoughts up and also due to the lack of sleep again thanks to the prednisilone but also my breathing has been getting worse in the late afternoon, evening and into the night making sleep difficult.

But World Asthma Day 2018 was recognised by Asthma UK with a huge thunderclap on how to deal with asthma attacks which reached far and wide across social media. However there was some very disappointing news also announced which is devastating and really makes you think how, why and when will those in power do something about it.

What Im talking about is the UK’s statistic on asthma deaths.

World Asthma Day 2014 saw the publications of the National Review of Asthma Deaths (NRAD) which showed the devastating numbers of people dying from asthma but also that over 2/3 of those deaths would have been preventable had they received the correct asthma care including having an asthma action plan in place, having regular asthma reviews and also correct inhaler technique. The publication of NRAD was meant to be a turning point in asthma care given the shocking statistics. I remember at the time thinking it was bad and that so many people shouldn’t be dying from asthma so you can imagine my shock, upset, dismay when I woke up to hear that asthma statistics have not got any better in the last 4 years in-fact they have got worse. Asthma deaths are 20% worse than they were 4 years ago making asthma statistics in the UK as the 5th worst across Europe and only one of three countries whose death rate increased rather than decreased. It is really shocking but then I sit and think a bit more about it and am I really surprised? I don’t think I am. I didnt think the rate would have increased as much as it has but if Im honest as a patient I really don’t see any changes that have had a big impact on asthma management, and if there are no changes there then there won’t be much of a change in the statistics.

As a patient who has asthma and does use a variety of NHS services because of my asthma I have not noticed any changes in how asthma is managed and monitored. I know my asthma is not run of the mill asthma and is more complex therefore GP’s and asthma nurses in primary care do not have a lot of input into my care other than my annual asthma review which the asthma nurse does at the GP survey. However the review tends to be me updating them on the new research that is out and what new treatments are available. I am often told that I know my asthma better than anyone so they are going to let me self manage but will be there if I need them. I understand why they do this however as a life long asthmatic and a very difficult to control asthmatic I cannot remember the last time I had my inhaler technique reviewed. I don’t think I am doing it wrong as take my inhaler the same way I always have. I also don’t have a written asthma action plan. I have bugged my (now old) consultant for one because being on maximum doses of inhalers I don’t have room to move should I get a cold or chest infection. Now that I am going to have a different consultant who i hope to have a better relationship with and will work with me rather than against me or just not work with me at all leaving me to do most of my management and hoping for the best (mostly I think i do the right thing!). But this got me thinking, how many other asthmatics like me who are difficult to control are just left to do their own thing because the asthma nurses they see say the same as mine that they are far more knowledgable than they are.

One of the other problems I see often and I think is a potential barrier  to reducing the number of deaths due to asthma is those who have asthma give it the respect it deserves and be sensible with it. Due to the difficulty I have with my asthma and the isolation I feel as a result of it I am in several support groups for asthma, brittle asthma and difficult to control asthma. It is here where you can chat to people who know exactly how you feel, how debilitating it is and the frustration  you feel when you try to do everything right but still your asthma is not behaving.

These groups are a great source of support however there is one very concerning theme which keeps recurring which no doubt is also a factor for so many asthma deaths and this is not getting help early.

I will often see posts made by people saying they have been using whole inhalers in a couple of days, or they are struggling to talk and having an asthma attack and they don’t know what to do. In these groups we do not give any medical advice but would suggest the person concerned follows their asthma action plan to which some would reply saying they don’t have on, or that they go and get seen by a GP or hospital. Again some group members would respond saying the GP does nothing except give them steroids or send them to the hospital. There is also the situation at night when GP practices are closed so you need to phone NHS24 and they will assess if you need to be seen by a Dr. Many people again don’t see the point in going to out of hours because they don’t know you so wouldn’t be able to do much. It really frustrates me when this happens. I can understand that asthma is very tricky to deal with as there are so many different phenotypes so seeing your own GP is preferable but it won’t always happen that way and more than likely it is during the night when you start struggling to breathe.

Now for the last, most serious, and riskiest behaviour that also occurs in these groups which could quite easily cause death. What am I talking about is when people post photos of their oxygen saturations or heart rate accompanied by a comment about how much they are struggling and finding it difficult to talk and don’t know what to do. Again naturally you would offer support and see what they have already taken, followed their action plan and if all this has been done the next step is to go to A&E to be reviewed, have their chest sounded and some treatment if needed to get their chest and asthma back under control. The problem occurs when you have given them some advice and recommendations like they asked for however they don’t take it. Many say that going to A&E is a waste of time because they get told their oxygen saturations are ok and their chest is wheezy but they will be ok. They may be given some nebulisers and prednisilone and allowed home. They see this as a waste of time as some feel they can do everything they are being given in A&E. They don’t see the value of attending as they see it as just getting some medication but actually the Dr or nurses are assessing them to see how much effort they are putting into there breathing and if they are using their accessory muscles to help, they will also have bloods taken which can show if they have any infection and require antibiotics. So it might not seem that much is being done but there is a whole assessment taking place. Then there are another group of severe asthmatics who won’t go to A&E early as they feel they are always up at the hospital being admitted for their asthma or being seen in outpatient clinic so they want to maximise their time at home so will stay there until they are really struggling which is when it gets dangerous as an urgent ambulance is often required and the resus room is on standby for you so you get treated straight away and stabilised before moving to a ward. I don’t think people realise that by staying home longer they are taking a big gamble that they will okish by the time the ambulance arrives and takes  them to the hospital. The longer they leave it the longer and harder it is to get back to baseline and the more medication to help relax the constricted airways. This also means that they will require additional medications to treat the asthma and any infection present plus more medications for the side effects of prednisilone.

By delaying when you decide to go and get help because your asthma has got more difficult is critical because you don’t know how severe the attack may be and if your out with a bad chest you may be exposed to triggers and because your not well your airways are going to be more sensitive.

I guess the message I am trying to get across is that no matter how busy you are in life or how much you feel you spend off work and in the hospital nothing makes up for not having a life which is what will happen if you don’t go and get help early for your asthma.

Last few weeks

The last few weeks have been tough, far tougher than I ever thought and looking back on them I am glad to have come through them with only requiring review from ICU and not needing to go there.

My chest and asthma control really hasn’t been great mainly due a combination of different things which eventually hit a head my body had had enough. Pushing myself on and on, not taking the time to sit a recover and put myself first was the main thing. I do struggle doing that often especially with work because we are so busy and I want to do my best for my patients as I know what it feels like to be left and things not being done- I hate that feeling and would never want my patients to feel it either so I kept going getting things done often finishing late, working through lunch and not looking after me. I need to look at this in future as there are others in the team who can take the slack and some of the load off me. I need to make sure I ask for it. It came to a head when I went into work and sounded like I had swallowed a whistle and was told to go home which I did.


I went in to hospital via out of hours as I didnt think my breathing was too horrific which is why I went via out of hours and not straight to A&E. However I managed to freak them all out in out of hours as I was a little blue around the mouth but also my heart rate was up at 180 so I was sent straight to the resus room at the Western General where I would stay for the next 4 hours until stable enough to go to the ward. It wasn’t until I go into hospital that I realised how unwell I actually was and how hard I was working to keep myself on and even keel. It was like I knew I was in a safe area so I could stop and be looked after. The advantage of being at the Western is that if you go in with a respiratory issue the respiratory team will come and see you and treat you in the acute attack. I find this good as they know exactly what to do and how to get on top of the attack quickly. We managed to correct the bronchoconstriction fairly quickly with IV magnesium, hydrocortisone, adrenaline and aminophylline and continuous nebulisers plus oxygen however my high heart rate was becoming a concern as it wasn’t coming down and despite being given lots of fluids. We soon fund out why. My theophylline level was 40- ridiculously high and my potassium was 1.8 seriously low both of which can lead to tachycardia. I had to have my aminophylline stopped because the level was so high and the only thing to do is wait for it to drop itself but at least we found the reason for my fast heart rate. I was pretty concerned and confused as to why it was so high but this we also found out was most likely because of the antibiotics I had recently been taking.

During the admission I was so grateful to the nurses and Dr’s who looked after me. It was a long admission with several attempts and fails at getting access and bloods, weaning of steroids and then increasing steroids and a lot of frustration as to why I just wasn’t getting better. The care I received in this respiratory ward was second to none. I could not have asked for better. The staff were all willing to let me self manage but if I needed help they would be there compared with the respiratory ward in the other hospital where you feel like you are being a pain if you ask for anything and they just kick you home whenever they feel. 2 weeks was a long time but they really made sure I was feeling better and made sure my chest was better and explained and worked with me to self manage to the best I could.

This admission was also very eye opening as it made me realise just how bad my care has become and how much I am doing myself in order to just get myself through. I have been frustrated with my respiratory team for a good while now as felt they don’t look at you as a whole person rather they just want you to be on the least amount of medication possible no matter how awful you feel. I wasn’t prepared to do this as I love my job and am quite a social person so would prefer to need that little bit more medication if it meant I had some quality of life so for a long time I have been muddling through myself trying to find the balance and always worrying what if I did something wrong and end up in hospital and end up being told off for increasing my steroids etc. I had quite a few bad experiences when looking for help from the resp team regarding various things such as when I was exposed to shingles etc. I ended up feeling quite scared to ask them for any advice or help. A few other scary things came out of this admission as well which I didnt know and that was that I have had abnormal ECG’s for the past year- more abnormal than before which no one told me about. As a result of all of this I have decided to cut all ties with my current respiratory team and move all my care to the Western. They may specialise more in CF than they do brittle asthma but I have confidence in them, the team there is willing to help and I think I can work with them to get my health back. I was thinking back and the last time I really understood my asthma and had a good treatment plan was with my old consultant at the Western before he retired, so maybe moving everything back here and although it will be a different consultant it might just get me that stability again.

There is still going to be the time that I see my old team if I am admitted via A&E but they won’t have control of my care and would only ever need to treat the acute setting.

I know that my health is not going to change overnight and in fact this admission is going to take some getting over and some work to get back on my feet but I can do this positivity knowing that my care is changing.

Writing in hospital

I don’t normally write when Im in hospital. Mainly because I don’t feel well, my thoughts are jumbled up, I am a bit hypoxic which means nothing makes sense.

However this time I did write and thought I would share what I wrote.

“I hate having asthma. I have been here a week and I am still struggling to breathe. Just to get up, shower, dress feels like I am running a marathon. Needing nebulisers just to get myself through the most simplest of tasks which I should be able to do by just pacing. It is so scary when your left gasping, nurses say that you will be ok and you know you will be ok but it doesn’t help the fear. A fear that leaves you stuck in one place and not wanting to do anything for fear of having that gasping, suffocating feeling again. I find it so difficult to sit and accept that my lungs are not great. I think its not fair, I haven’t done anything to my lungs to cause them to hate me so much and work so poorly. Seeing all the patients with COPD who have smoked and still smoke have a reason for struggling to breathe, I wish there was a reason or something I did to deserve the punishment of not being able to breathe.

The Drs and nurses have been so good, looking after me and treating me to the best they can but even still they cant alleviate the constriction around my lungs making it easier and less like a marathon. Last night I felt so scared and couldn’t breathe. I didnt know when it was going to end, trying to focus on something else and put my breathing exercises into use was out the questions, even listening to an audiobook was impossible. I didnt know what to do with myself. Finally the Drs were able to give me some medication which really helped open my lungs up and breathing was easier but I was still left with the fear.”

I only wrote a very small amount but it seems I was gripped with fear over not being able to breathe and seeing no light at the end of the tunnel.

The whole admission was a mix of emotions but hopefully it has been an admission where changes will be made and progress will occur!!!

Explanation for lack of posting

I realise it has been a long time since I last wrote anything here. It wasn’t intentional time just slipped by and before I knew it over a month has gone by and I am only now sitting and feel like I have the time, and concentration to write again. I hope now normal service will resume as I do have a fair bit to update and thoughts to sort out.


For so long I have been battling my asthma and health. I have managed it mainly with what I would call traditional western medicine and have never explored the idea of alternative medicine mainly because my Drs or nurses have never suggested it and the one time that I did suggest trying something it was shot down and told not to waste my money.

However I now feel that I really have nothing to lose. I am on so much medication now that I am not sure that there is much more I can try or that my Dr is willing to give a go (I want to try terbutaline again but my Dr is set against it) so I feel that it has been left to me if I want a change as nothing is changing otherwise. A friend of mine who is also an asthma nurse specialist suggested trying Reiki. I have never even thought about trying it or even how it could possibly help but I have the thinking that it won’t do me any harm so why not try it. I eventually made the appointment and went for my first reiki session.

I had no idea what to expect from my session. I did a little reading about it but wasn’t sure how it would work, how I would feel and what it would do to me. The session was a bizarre experience but bizarre in a good way. The lady doing the reiki explained to me about what would happen, what she would do things I might feel, how long it would last etc. I was a little apprehensive as I needed to lie down but was propped up with pillows. Im not the best at lying down and I find it hard to relax sometimes but for some reason I felt ok and didn’t mind lying down as I was cocooned in blankets and felt very comfortable. At first I sort of wondered what was happening but there was a calm about the room and I didnt need to think or worry or anything really.

During the session there were some times when it felt very strange. Part of me felt freezing cold for a short time during it and equally my knees down to ankles felt like they were on fire for a bit. I hadn’t told the lady much. She knew about my chest but that was it. After the session which was about 45 minutes we had a chat about what she felt and what I felt. One comment she made was that she felt a lot around my knees and lower legs and could have been at them for a long time. Now bearing in mind I had not said anything about my legs, I don’t have a limp or anything to give away that I might have a problem so when she made that comment I was taken a back as one of the main things I thought the reiki might help with is my restless legs as it drives me bonkers. I will get up in the middle of the night and go for a drive because they get so bad. I have also had my knee operated on and have problems with the other one too so when she picked up on my legs I was shocked. I wasn’t sure why I was shocked. I think it was a mix of not knowing how much reiki would do and maybe underestimating what can be done.

After the session I felt so relaxed. I am not sure why but I did and was able to enjoy the rest of the day relaxing and properly relax. I am going to go back for another session and I hope a few more as I cant see or feel any negative effects from it.

I will see how it goes. Even if it doesn’t make my asthma better it is at least helping me relax. I might look at other things to try as there is no harm in trying.