NHS Research Scotland Away day!

Gosh! Im getting used to being the only patient speaking at research events!!!

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Today NHS Research Scotland (NRS) held an away day in Edinburgh with a variety of researchers, research managers, R&D, members of the CSO and various others. There was also me- not a researcher, research manager or in any of the other positions that other attendees held. I was there as a patient and to give my perspective of patient and public involvement (PPI) and how it has impacted me.

As I present more and more and to larger audiences I find I am more at ease speaking at the lectern in front of a room full of people. What I have realised is that I can articulate the importance of PPI and how passionate I am about it. My passion for PPI comes from the experience I have had being involved in research and how it has changed my life. Not wanting to overuse a statement but it is I guess my catchphrase to sum up how I feel about PPI…

“the best thing is being able to share what I have been able to do in research and help researchers understand what it is like to live with uncontrolled asthma…PPI and research has really turned a negative situation into a positive one”

I feel so fortunate to be able to speak about the variety of different opportunities I have had as a result of PPI. Every piece of research is different so PPI activities that go with the research are going to be different but the aim is the same. It is about helping the researchers to get the most out of their research and making it applicable to people with that condition.

Not all researchers are receptive to the idea of PPI and working alongside patients as colleagues, but as PPI becomes more of an integral part of research and grant applications it is horrible to think that researchers who don’t like PPI are forced into doing it and then do PPI badly and this gives a really negative experience for the patients involved. As I have more experience now I feel confident in saying to researchers if it has been a bad experience but when I first started I didnt have that confidence and I don’t know what the researchers thought afterwards and would hate to think they went on as they did and give other patients a similar experience which is why I will now say if its not been good.

Speaking at events I can get across the importance of PPI to not only researchers but also to the patients involved and how it can give us hope that there is people who care about our conditions and are trying to improve our lives.

I started off in PPI not really knowing what I was doing and if the comments I was making were correct or not but as I do more I gain new skills and my understanding of PPI is greater. I love being able to share my passion for it and hope that by expressing my passion and how it has affected me will inspire researchers to go out and plan PPI events and incorporate PPI into their research.

Today at the NRS Away day I really hope everyone got something out of what I said. It was lovely to hear all the positive comments and the thank yous that people gave me is lovely to hear.

I want to open up and if anyone is reading this post who wants to find out more about PPI or how to get involved please leave me a comment as I am more than happy to answer questions and point you in the right direction.

Any questions just ask!!!!

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#WMTY18 #70nursebloggers

It is the NHS’s 70th year this year. There has been a huge amount of different events to celebrate the 70th birthday but one thing I did come across recently on Twitter was #70nursebloggers and #70midwifebloggers inspired from a tweetchat held by Teresa Chinn the nurse behind @WeNurses (you can read more about Teresa on the Healthcare Heroes websiteand I am proud to have been a story alongside her in the book). They wanted to inspire 70 nurses and 70 midwives to either start blogging or speak up about their blog. Nursing now as a profession has changed so much recently and with the popularity of social media it becomes a bit of a minefield about what you can and what you cant do. Twitter for me is such a fantastic outlet to share experiences, knowledge and news about nursing, patient and public involvement and research.


I decided as a blog post I would share with the #70nursebloggers is my thoughts on #WMTY18

#WMTY18 or What Matters to You 2018 is a campaign across the NHS which aims to encourage and support more meaningful conversations between people who provide healthcare and those who receive it.

As I am both a nurse and a patient I wanted to split this post into 2 parts wearing my different hats.

#WMTY as a patient? Being a patient is sadly a large part of my life and through this I have had a mix of care over the years but fundamentally there are a few things that really matter to me when unwell in hospital. Naturally for healthcare professionals who see someone struggling to breathe they will tell them not to talk and save their breath or they try and finish what I want to say before I can manage- most of the time they guess wrong!!! I know it is because they care but it can be so frustrating especially if it is something important and affects your care but due to the guessing game going on care is delayed. I have a hospital bag that is always packed and ready to go. In that I make sure there is a pen and notebook so I can always write if its getting desperate!!! It seems like a really simple thing and may seem very petty but it makes all the difference when someone just takes the time to listen to you.

Anyone with a chronic condition and requires hospital treatment a lot will no doubt have had the intravenous access battle. The battle that can end up so distressing, painful and frustrating. When you are unwell your body shuts down peripherally so any veins you did have disappear and when having an asthma attack you mouth breathe a lot making you dehydrated causing the few veins that might have been there to go away too.  For me the hard part comes when the tourniquet goes on and there are some veins which show up, the issue with these veins is the only reason they are more prominent is due to scarring. Some Drs and nurses are great and listen to you when you say that the vein won’t work because it has only appeared due to all the scar tissue but there are others who say they are great at dealing with patients who are difficult to cannulate so just let them try. If I really don’t have the puff I let them try and almost every time they fail and maybe after 3 or 4 times they will listen and go where I suggest. The issue I am having now is that those veins are now going to. Last time they had the sonosite out to find a vein, GTN spray on my skin to dilate the vessels and still it took a good few times to  get a cannula in. If a patient does suggest where to go for a cannula especially if they have a chronic condition and had a lot of issues with access then listen to where they recommend. It alleviates a lot of distress and pain doing this and as a patient we appreciate it.

Lastly, and this is more of a comment really but just because your patient looks young it doesn’t mean they don’t need help. This more often happens with other patients who assume that because you are young then you are more able than they are and just think your being rude or selfish not helping them.

Taking the patient hat off and putting the nurse hat on!!

#WMTY18 as a nurse? I love being a nurse and really hope that my experience as a patient shapes how I communicate and treat my patients. For me as a nurse I really want to ensure that I speak to my patients and find out what is important to them, their lifestyle and hobbies etc. Patients are in a vulnerable position when they are unwell and don’t know what is happening or if their health is going to improve and they will feel better. In the acute setting it is harder to spend a lot of time chatting to patients and really getting to know them however in my role I do have the time to get to know what is important to them and their family. I take the view that if I can have a dialog with my patients they are more likely to open up about how they feel towards their condition, what might stop them from doing a certain treatment etc. Chronic illness like kidney failure has such a massive impact to not just the patients life but their entire family so making the treatment fit into their life as easily as possible is my aim. It may be that I want to give them a certain dialysis prescription which the patient may do but only does it very sporadically due to other commitments that they do not want to miss. The beauty with a home treatment is that it can be adapted to fit in with their life. It may not be the treatment that you would like them to do and give them the most dialysis but if it means the treatment is a little suboptimal but they are never missing a session and enjoying life without too many draw backs then it is a win in my opinion.

I also like to explain to patients that no one is a perfect patient. We all miss doses, or go off piste with a diet but its only natural and berating them is not going to achieve anything so making allowances is important. Explaining what could happen if they were rogue too many times but also explaining that if they over indulge in what they are not meant to one day then just take sure they are really good the next few days. It is all about compromise and I really hope that as a nurse I communicate that with my patients. After all it is their life, their condition and their treatment which we can only support them with and support them through the best we can. If we can give them the tools and the correct tools then patients should be in a more positive state of mind.

I really hope that this comes across when I speak to patients and families and I do make a conscious effort to ensure I do this and think about what I would want as a patient and how I would feel if I was in their shoes.

Take a moment and think about what matters to you? If you are a nurse what would matter to you as a patient or if a member of your family is a patient. What matters to them?

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!!!

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.