#HealtheVoices 2019

I am super excited and cannot remember if I posted about this before but now that everything is getting to the final stages and it is really going to happen I thought I would write a post all about this next exciting opportunity.

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HealtheVoices is not something I had heard. Fairly recently while looking on Twitter I came across them and the conferences they have done as well as the amazing patient advocacy. HealtheVoices provides a ground breaking leadership conference for those involved in advocacy for their own health conditions, the communities around them and others as well. The conference is to empower those in advocacy to continue the work they do and get as much impact as possible from it. They have been organising these conferences and this year it will be their 5th event.

I can’t remember applying for the conference or filling in the form so when I got an email in January asking me to be a speaker and lead a session I was shocked but also had a huge sense of pride that despite asthma dictating my life I have had so opportunities as a result of it which are truly once in a lifetime events.

The event this time is over in America. I fly to Dallas Texas in a weeks time and am so excited. I have never been to Texas and will have the chance to have a few days being a tourist out there to.

We have just got off possibly the biggest conference call I have been part of. I think there were 69 participants in total. Most of these people were members who are coming to the conference and not all speakers. They said there was well over 350 applicants so to be short listed to give a talk is probably one of my greatest achievements.

The one down side (if you can call it that) to this is I have had to 1) prepare what I am going to say and 2) put together a power point presentation. Many who read this will know my aversion to slides and my slight aversion to preparing. As Allison would say I just like to wing it or busk it!!! For this though I cant. So I have put together some slides myself which I think look ok just waiting on the legal team to give them the ok! I have also written most of my talk. 45 minutes is a long time!!! I will be giving my talk a test run with my Mum so fingers crossed that goes well, may even run it by my little brother too depending how brave I am!!!

Public speaking is something I have grown into. A good friend of mine and PPI colleague Elisabeth likes to recall the story of when we first met when I was so shy and quiet that she struggled to hear me speak. Now she struggles to get me to shut up!!! With every talk I give I can feel my comfort with speaking grow. I still get very nervous at certain events and was so thankful on some occasions that I have had a lectern  to stand behind because my legs were shaking so much but on the whole I feel ok when I am speaking.

I am so proud to be able to go and share my story and tell others about how great being involved in research is, all the different things you can do and how to get involved. I am also teaming up with webMD too which will be awesome as they have a huge online platform.

Will be tweeting and blogging from the conference if there is time although it seems like a jam packed program. The conference will be streamed live so will post the link for this when I know it. Remember though there is a time difference!!!

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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Patient Centred Care

I have quite a few different blogs in my head after my last hospital admission due to a variety of things that happened.

Where better than to start at the beginning.

It was the usual start= difficulty breathing so did I usual nebuliser treatments and thought I should probably call 999 as I wasn’t getting much relief. The call handler was great. I normally just hang up but she stayed on the phone with me until the paramedics arrived which was good as it took a wee bit longer for them to come so she was able to distract me from focusing on being scared that I couldn’t breathe.

The paramedics did their usual. Although my blood pressure was through the roof which normally happens but later on. I think it just shows that I had been struggling for a while given how quickly it went up but also how quickly my heart rate was going too. Apparently the Western General doesn’t take emergency asthma attacks anymore as they are not equipped (despite going there in February) so I had to go over to the Royal Infirmary which isn’t my favourite but as it turns out it was a good thing I went there. So blue lights across town which is something I can never get my head round, part of me would love to be feeling well when going across town with the blue lights to see where they go and stuff but to have blue lights is really not a good thing so not being able to remember it is not good either. I would prefer to get myself across town to the hospital without needing an ambulance or not require the hospital at all.

The guys in A&E are fantastic straight into resus and getting sorted out. The challenge of getting a cannula in started and once they got it in the radiographer who was less than pleasant trying to get me into odd positions and not sympathetic to the situation did her best to pull it out and almost succeeded but for the quick hand of the Dr.

I did laugh though as the Consultant who I saw first uttered those words all asthmatics hate ‘just relax and concentrate on your breathing’. I wanted to throttle him. He was a really chatty guy so I couldn’t at the time get a word in to say to him what I wanted to but after they got some magnesium, hydrocortisone and aminophylline running I was starting to feel a bit better and could talk a bit more. When he next came in I was able to wave at him and tell him about the BMJ article I wrote. He said he found it really good as he had never thought of asthma in that way and he thought that it looked so difficult for us to talk so we just shouldn’t. I explained that if an asthmatic didnt want to talk they probably wouldn’t rather than try to fit their words in around their breathing. There was a noticeable change in how he treated me after he read the article and was obviously applying new learning which s really rewarding to see.

The slightly negative part of the whole time in A&E was that they sent ITU to come see me as they felt I needed to be there rather than going to a monitored bed in the assessment unit. Thankfully an ITU Dr who has seen me before was the one to review me and gave me more time to try and get on top of things. I did manage this and was significantly better but was shocked when a nurse came and told me that I was going to Intensive Care. If I’m honest this freaked me out a bit. I had assorts of things flying round my head. I though I was doing better and I was wondering what they knew that I didnt, were my numbers worse, was I tiring and the adrenaline of the attack was keeping me going. I was quite upset by the thought of it. I said to the nurse I didnt want to go, who then got a junior Dr who told me I needed to be there. The junior Dr got the consultant who by this time was a different one from earlier as the shifts changed.

This is where I cannot thank the A&E Dr enough. I thought I was in for it and going to be told I was unreasonable, and didnt know what was best for me because the Dr walked in looking at me carrying a chair, shut the curtains and sat down. At this point I thought she was going to tell me I had to go to ITU and had no choice etc. I was so wrong. She sat down and asked me how I felt and gave me her rationale for going to ITU. But I was able to tell her my fears of going to ITU and just that I felt significantly better from when ITU came and reviewed me. But also I was able to share my fears about ITU. Every attack I have now I end up in ITU or HDU. I honestly thought this time I was doing better and didnt need to go. The Consultant spoke to the on call Resp Reg about me and my concerns etc. It was agreed that I didnt need to go to ITU and could go to a monitored bed but should anything change and I get a little bit worse at all then there was a really low threshold for me to be moved to ITU.

What I really liked about the A&E Consultant was that she was all about the patient, and what is best for the patient, and involving the patient in the decisions about their care. When first taken into Resus you don’t get a say in what is happening as they are running around trying to save your life and that is their sole focus rather than if you want that or the next but the move out of resus and into the high care area sort of signals the change in care and is a move when the patient can be involved in their treatment and have input into what they think best and have discussion with Dr’s.

I was and still am so grateful for the Dr who took the time to speak to me and listen to me about my concerns of going to ITU and why I felt I didnt need to go there. I understand that if I need to go then I need to go and ultimately if after that chat the Dr still said I had to go to ITU I would go as I am not going to go against what the Dr’s say but being heard and listened to makes such a difference.

As it happens I needed up going to Critical Care anyway but that was due to an anaphylactic reaction which caused my chest to deteriorate rather than just an isolated deterioration in my asthma.

I must say this really was an excellent example of patient centred care and when patient centred care is appropriate and when it is not.

“Just relax and concentrate on your breathing”

I smile to myself as I write this post for a number of reasons. It seems apt to write this while I can’t sleep because of my asthma and am sitting on the couch hunched over with a neb making it easier to breathe- I wish I could just relax back it would be so nice.

But I have the biggest smile because just about a year ago I was asked if I would be interested in writing an article for the British Medical Journal (BMJ). I agreed. It was for a patient series called “What your patient is thinking!”.

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I obviously focused on asthma, but concentrated on one specific part of asthma and that was during an exacerbation which results in you ending up in Accident and Emergency. The piece was to be written as a learning tool for Dr’s to help them make the patient experience a better one. Sometimes patients may have a bad experience in hospital and it is not because of lack of care but sometimes they way they are spoken to, or they are not listened to etc. There can be a variety of little things that can really make a difference to the outcome for the patient.

I had three key points I wanted to share, and am pleased that so many people have commented on the piece saying they have felt the same but they thought they were the only ones who felt as they did. The points were:

let the patient be comfy- when struggling to breathe there is no comfy position but a patient will have a way they want to sit or find they get some respite. I like to sit bolt up right or brace myself against my knees leaning forward a bit.

Please don’t say “just relax and concentrate on your breathing”- it seems like a very kind an innocent thing to say but it gets really wearing on a patient when everyone they see in A&E tells them this but in reality you can’t relax and the more you concentrate on your breathing the more you focus on how hard and terrifying the situation is and therefore end up making the whole thing worse by adding panic into the mix of an asthma attack. Often as medical practitioners we don’t think how the patient may feel hen we try to say things of comfort like this. It is my pet peeve in hospital and grates on me when someone says that!

Lastly was to give the patient time to talk, it may look difficult and hard work but if the patient is wanting to talk let them, or offer them pen and paper if it looks like it is too much work. Often the patient can tell you vital information about their asthma and things that will help which can help speed the recovery of the attack up. I do find that I want to talk unless I am at the point of exhaustion and even breathing just feels like too big an effort. By focusing on getting my words out I am not focusing on the difficulty breathing and can find talking distracting sometimes. If I don’t want to talk I won’t but I really appreciate it when a Dr will take the time to listen even if it is 2-3 words between breathes.

I hate to think that others go through hard times with their asthma and have rough experiences in A and E but I have really appreciated the comments from people who read the article and that they can relate to it. I didnt only want to write it for me but for everyone who attends anywhere with asthma, or an asthma attack as generally we all feel kind of similar so I hope that more people can read this and maybe perhaps make even just one patients experience of asthma better.

I am also having a small chuckle to myself because I still cannot believe I have published an article in a journal. When I did Sports Science when I first left school I always dreamt about having a journal published but back then never did I think it would be something like this. If I am honest being published was a bit of a pipe dream. Especially as I got an E at my A Level English despite working my ass off but thankfully (i think thats the right word) when I sat an entrance test to do my Nursing they picked up that I am pretty badly dyslexic because I write my letters back to front and some other things. This discovery has been a blessing as it means I may very well get more things published as I have really enjoyed doing it and really enjoy writing wether it is for my blog or PPI stuff or work. I do wonder though what my English teacher would think now after years of despair trying to teach me- it was like teaching the unteachable!

I want to say a massive Thank you to all the kind comments I have received about my piece and if you want to print it and share it with others please do. The more people who read it the better!!

http://www.bmj.com/content/351/bmj.h6185

Signs vs Symptoms

After my last post about pulse oximeters and oxygen saturations some of the comments were interesting and not surprising.

One of the most common things you hear when having an asthma attack is “your sats are fine your ok”.

As a nurse your trained to look at signs first and then symptoms but often we look at the signs and judge a patient by them rather than the whole picture. Which as a patient I know is so frustrating. Especially with asthma you feel so awful as not only you cannot breathe but you are scared and tired and often being told your fine is really hard to hear and can make you feel worse as you have altered judgement due to the situation so it will often make you think they won’t do anything to help your breathing.

I wonder if there is a way we can communicate with nurses and doctors to say that we know our sats may be fine but that doesn’t mean I don’t feel absolutely awful, scared and would like something to help alleviate that. I am wondering about using a cue card type of thing which we could show to the nurses and Drs when they are telling us that our oxygen sats are fine and we are ok. During this time speaking is very difficult so a cue card might be easier to communicate our feelings just so they can understand. I have found that once nurses and Drs understand how I feel they are more sensitive about what they say to you. There are many more ways in which you can be told your sats are fine and are ok without the patient ending up feeling terrified or over reacting afterwards.

Some examples might be:

I know you are really struggling but a good thing is that your oxygen levels are good just now but we will keep an eye on them.

or

We will give you some medication to help with your breathing and make it easier. Your observations look ok just now but we will keep an eye on them while your chest settles and breathing becomes a bit easier.

This is just an example of what I thought could be said but I am sure there are many more ways it could be said.

As a nurse looking after patients and trying to get help from them I have found it hard to get them help when you can tell by looking at them something is not right but their clinical signs are all ok. When you call for help from a Dr you will go through a series of questions many of which are about signs a patient is displaying not what your gut feeling is and that they just don’t look right. Often by the time their signs match your gut feeling the patient is much sicker than before.

It is a real balance between not over reacting and acting as needed. In a way I am privileged as I have seen it from both ways. I am both a patient and a nurse and hope that my experiences as a patient reflect how I conduct myself as a nurse.

Feel like that duck…

Feel like that duck you see calmly swimming in the pond but take a look under the water and his feet are paddling furiously just to keep a float.

Chest wise I feel that I am managing to keep the outside world seeing me as ok but when I leave work and get back home I just collapse into a heap and the outside shell comes off to reveal total exhaustion, pain, fear and the fight for breath. More and more now I can’t keep up this persona of all being ok. More and more people say to me I look tired, i sound awful, should I be at work. The reality is that perhaps somedays I shouldn’t be in work. But I love my work, my work gives me a purpose, its gives me something to do with my day which otherwise would be spent moving from bed to sofa to a stroll outside to perhaps the sofa again. It would not be the life for me which is why I push and fight a daily battle to get up, get dressed, have my meds and put on that face that can take on the world.

It is a difficult one because I know my colleagues all care for me (mostly) and don’t want to see me suffer, and if Im not well I should be at home. But my mentality is that if I call in sick I am not failing but adapting to a life I really don’t want. Fighting to stay well, have a job and live a life I have earned keeps me going. If I stopped this I would give up. There would be nothing to drive me on to get that health and wellness I really want.

In my job I can relate to my patients. I can understand the frustrations of waiting for Dr’s, or getting the wrong prescription, being told you can’t go on holiday, getting the news you need to start a life changing and life altering treatment, having to accept you now have a tube coming out of you or a great big blood vessel created- I can understand these fears, frustrations, anxieties that they go through. Even the little things like holidays, working, friends, altering a diet. I have experience of this. I can share my experiences of dealing with these things and how to navigate the world of hospitals, Drs, nurses and all the other allied health professionals you see. This is why I love my job. I can help my patients adapt to living with a chronic illness and appreciate their frustrations at having their illness forced upon them through no fault of their own.

As my health has got worse recently I don’t work as long as I once did but there are times that working the hours I work it is not possible to do everything I need to do in the time allocated. So what do I do?? I don’t go home when I should. I stay until the job is done. This happened tonight and I suffered from it. I stayed late went to pick my bag up from my office which had been sprayed with some god awful deodorant or perfume. I had quite a bad asthma attack which I got control of and got help and I am getting back on the right track. Many ask why I stayed, I should have left and the person whose patients they are should have dealt with them. I knew this wouldnt happen so I wanted to stay and make sure they had everything they needed and would receive the correct treatment etc.

Why did I do this??

I had a community matron when I lived down in England who went above and beyond the call of duty. I was on a rather complex regime of stuff including a sub cut syringe driver of terbutaline. Like PD sub cut drivers for anything other than palliative care are rarely seen so most of the staff don’t take an interest and the patient suffers. This happened to me. I didnt get y 24/7 driver renewed, ran out and ended up becoming quite unwell and going to HDU. For several admissions after that my community matron would come to the hospital if she knew I was being admitted (she normally did as she was the one sending me in) and have all the stuff there for me with a plan. This meant I didnt suffer. I got the treatment I needed and often this meant I would be in hospital a shorter time than had I not had my treatment.

So I guess that from the experience I had with my community matron it has stuck with me. She inspires me to be the nurse I am. If I can be half as good as her it would be fantastic. Even if at times I thought she nagged the hell out of me, often wanted to slam the phone down on her, not answer the door bell because I knew there was something she was going to tell me to do or some appointment she wanted me to go to or the worst being she would admit me to hospital. But she did all this because she cared and wanted the best for her patients. I didnt see it always at the time but after a few days and feeling better I would get that “told you so look” from her- I could never win!!!

Having this experience is why I do the things I do. I want the best for my patients. I am lucky that I still have this reciprocated by my medical team who want the best for me.

If I get through the day doing all this then I can flop once home. I can sit down and concentrate on myself. Trying to look forward and plan for the days when I won’t be this duck paddling frantically under water will be great but being able to live just now as I am is getting me through the day. Only those close to me see the real fight that goes on and even then they don’t see the half of it. One day things will be different but for now it is one day as it comes. Over coming obstacles no matter how big or how small.

The only slight good thing about today is that I have a real reason and trigger which caused an asthma attack. Normally Im never really sure what has been the definite thing to cause an attack as there is so many things ranging from dust, pollen or food. Today I can nail it. It was that horrendous perfume or body spray or whatever. It may not seem like a positive but you need to find positives in all situations and this was it. I identified the trigger. May need to wander around with a mask on in future to avoid any toxic smells again!!!IMG_2619

 

This is my night. Some nebs and fingers crossed some sleep!

What happens when there is nothing else?

During my last hospital admission I was very apprehensive about seeing my old consultant. I had recently changed consultant out of frustration and fear of losing my job. Just reducing prednisilone and seeing how I go was not working for me when all I wanted was to get better.

My current consultant is now based in another hospital in the City. The hospital I was admitted to was where my old consultant was based. Luck would have it that I was put under my old con too!!! I was really nervous about seeing her. I had not left things in a good way and didnt really say to her why I had left. I have told the nurses etc on the ward but not the consultant.

Ward round came and my old con was there in the team reviewing me. She was really nice and I asked to speak to her without the rest of the team. We had a good chat about a variety of things. I ended up in tears. We had a chat about why I found a different consultant and it helped us both. I explained I couldn’t keep going with the reducing prednisilone and seeing how I would go as I was missing to much work and ending up in hospital too much. It was taking too big a toll on me.

I asked if there was anything I could do to stop these attacks getting so bad. Part of me really wanted her to say yes there was something I could do so then I had the hope of changing something to make myself better but she said no. She said I was doing everything I could to manage my condition the best I could. This has left me feeling really deflated. As she said it she gave me a hug. I don’t want my life to be like this. Its like being on a knife edge never knowing which way Im going to go.

One good thing that has come out of it is that she is going to take my case to a big respiratory meeting where a whole host of asthma specialists get together to discuss difficult cases. I hope with this something will happen and someone might come up with an idea of how to make my life a bit better and have some more control of my asthma. I know I will never be free from it but just now every asthma attack lands me in hospital as I can’t control them and to be able to control them a bit better is the one wish I really want to come true.

I just need to be patient and see what comes of this meeting. Im in a quandary now as to which consultant to go with. If I’m honest I prefer my old consultant and not much has changed with this new one and she did offer me so much help so I don’t know what to do. I need to sit and think about it and see what is best for me!