You can disagree with your Dr, its called self advocating.

Yes Dr, I will take that as you prescribe despite the horrible side effects stopping me living my life.

How often have you found yourself doing this? Do you know that you can speak up and disagree with your Dr or healthcare provider.

In the UK when it comes to healthcare traditionally we are not very good at speaking up for ourselves. We often go with what the Dr or Nurse says because they have done the training and what they know is best. This is a very antiquated view now I think yet we still want to please our Dr’s so will do what they say and take what the prescribe. We often think if we don’t do this we are seen as a difficult patient and no one wants to be a difficult patient do they!

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Speaking up for yourself can be daunting, I remember thinking I can’t question a Dr, they went to medical school for 6 years and have done countless more years honing their skills in whatever speciality they chose so who am I to question them. I only live with the condition I don’t (or didnt) know the physiology behind my diseases or the best treatments for them. This is what the Dr’s know.

I wish 14 years ago I knew what I know now. I have written about this before but 14 years ago my Drs had me on prednisilone (which frustratingly I am still on) and kept weaning it down as they did not want me on it long term. I didnt understand the long term side effects of prednisilone at the time but was getting fed up of feeling good while on higher doses of pred but then start feeling awful as the dose reduced and came off it. It was like a constant rollercoaster. My answer to this was just not to take the pred. I didnt feel good not taking it but at least I was not feeling great to then have that feeling taken away and I would go back to my life being put on hold. I found that I preferred to know where I was with my lungs and adapt to life where my lungs were not that great. This did not work out well for me on several fronts:

  • My health was awful, I couldn’t do anything, I was missing out on life, friends, sport, uni.
  • My mental health was at an all time low because I couldn’t do anything with my friends and just be a normal student, but I could not cope with being able to do things with my friends while on a high dose of pred for it to then be taken away again.
  • I was lying to my medical team, how could they trust me if I was not doing what they wanted me to do.

It all changed when I managed to get a chest infection and put off going to the Dr. I ended up in intensive care really poorly. I was questioned by my consultant about why I waited a long time to get seen and go to hospital and why did I not put up my prednisilone according to my care plan when my peak flow dropped.

It was then that I opened up to the Dr and said what I had been doing and why. I explained that I didnt like knowing that while on a high dose I would feel well and be able to do stuff and then the dose would be reduced and I would not be able to things because of my chest so would prefer to just not know what it was like as it was a false sense of reality that was just then taken away.

Once I recovered from that hospital admission I had a meeting with my consultant and asthma nurse to have a frank discussion about my asthma, asthma care, medication regime and care plan. This was the first time I felt that it was ok to speak up and say to them what was important to me in life and what I wanted to be able to do etc. It was great as we were able to work out a lot of things and while I had to make compromises as it is not possible to do everything I wanted to be able to do but now my consultant really understood me as a person and our working relationship grew because I was able to be honest. I was also able to bring suggestions to him about new medications I had heard about. It became a 2 way conversation which I have now always made sure I have with all my Drs and nurses involved in my care.

It can be daunting at first to advocate for yourself but I can assure you it is the best thing you can do. Drs know conditions and medications but they don’t know you and your life unless you speak to them about it. We didnt choose to develop chronic health conditions but we do choose the life we want to lead and this includes how we manage our health, what medications we are prepared to tolerate and what we are not. Some side effects may be ok for some to put up with but not others depending on life situations. For me just now I don’t mind my dose of prednisilone changing quite a lot because I am not working (I find that when the dose changes my insomnia is so much worse) but if I was working then I would speak to my Dr about not having the dose fluctuate so often so I could try and manage my insomnia better.

Self advocating is not about arguing to get your own way but it is allowing your medical team to work with you to get the best management plan for your condition and your life. If you as a patient are involved in the decisions about your care and agree with them then it is highly likely you will be a more compliant patient with medication compared to a patient being told what to do and what to take when who is less likely to comply because it is not what they want to do or it does not fit in with their life. No one likes being told what to do but if we are involved we are more likely to follow instruction.

It is important to remember that while self advocating is good, not everyone feels comfortable doing it and would prefer to just do as the medical professionals say. That is fine too.

I am so glad that I was able to learn that my voice as a patient is just as important. I do have knowledge, I am an expert patient in my own health and my conditions. I am allowed to bring my thoughts to the table when Im in appointments as I need to try and get the best management for my health possible.

I will leave it here but I would say self advocating does not make you a difficult patient, it makes you a patient that cares about their health. This is why I self advocate and why I am also a wider health advocate and will advocate for various health conditions like severe asthma and allergies.

Getting medication on time.

I am not actually sure what title to give this post.

I was recently in a consultation type meeting with a range of service users to discuss the nursing program at one of the universities in Edinburgh. They are being revalidated and want to make sure that the course is producing the best possible nurses it can who are fully prepared for life as a staff nurse.

One thing that came up that has been preying on my mind and the more I think about it the more it bothers me. As the group was made up of a range of people age, gender, background, reason for being at the consultation. There were a few people there representing Parkinson’s- either as someone with Parkinson’s, a carer or someone who works for Parkinsons UK.

The issue of medication came up in conversation and it felt like some had a bit of an agenda as they kept going on about how people with Parkinson’s when in hospital must get their medications the right time otherwise their can be negative effects if it is late. This was a statement that was repeated many times stating that the medication often had to be given out with normal drug rounds.

It felt like to me that those with Parkinson’s,their medication was more important than other patients who need medication. I take medication which is prolonged release and has to be taken at specific times which are out with normal drug rounds and must be taken otherwise blood levels drop and this can have a detrimental effect on my breathing and could cause an attack which may or may not end up needing intensive care.

What bothered me so much is that there was no regard for other people and their conditions and the medication that they are on. I know from experience of doing drug rounds it is very difficult to juggle everything but we do our best. Every patient is just as important as the next and every patients medication is just as important to them as all the other patients. If a patient was able I would ask them to remind me to come and give them their medication if it was out with a drug round or if able I would let them self medicate so they would get their medication when it was due. This can not always be done so we as nurses need to remember and we do try. I was thinking as a nurse if I went into a bay of patients and only did one patients drugs and told the others they would get theirs done in time but this patient needed their now. It would make me feel like I was selecting this patient and treating them differently to the others.

What I am trying to get across is that every patient is just as important as the next and everyones medication is just as important to them as the next persons. There are many medications which like the medication for Parkinson’s needs to be given at set times otherwise there is detrimental effects. I really felt like there was no regard for other people and their condition. Parkinsons is an awful condition and I have a good friend who has had Parkinson’s since the age of 8 but getting medication on time is just as important for us as well.

Im not sure if I am saying thins properly and if its making sense but everyone is just as important and medication  being on time is no more important for someone with Parkinson’s than someone with diabetes or asthma for example.

As a patient I advocate for myself. I ask the nurses if I can self medicate that way I remove the anxiety that can develop if I am not able to get medication when I need it. For example if my chest is very wheezy I am able to put a nebuliser on and then let the nurses know, or if my prolonged release theophylline is due I ask the nurses for it or if they are doing a drug round ahead of time I ask if they can leave it out so I can take it when it was time. Nurses try their best and do what they can but we as patients need to advocate for ourselves to make sure we get what we need when we need it but doing it in a way that is not being disruptive and demanding.

I hope I have not come across as disregarding people with Parkinson’s and the importance of their medication as I know it is important but other medications for people are just as important. I always worry when I attend these type of consultations when there is a few who seem to have an agenda or dominate conversation.

I am going to leave this now but would appreciate others thoughts on this post as it has had me thinking a lot.

2019 the good, the bad & the ugly

With the new year fast approaching I like to reflect back on how the year has been and what I have achieved. Last years post can be found here .

My thought for 2019 was:

2019 is going to be a great year, a year to focus on achieving the best health I can and enjoy life again. There will be hiccups, there will be hospital admissions but rather than feeling defeated by this I will accept them as part of my life and ongoing management!

Well I guess some of it is correct but I am pretty sure when I wrote that I did not think I would be in the position I am now in, it has not been all bad though!

I have focused on trying to improve my health. I made decisions and took steps I never thought I would to really put my body first. I gave up working in the hospital to try and get my breathing better. To start with this was going well but after a few very traumatic asthma attacks my life has been changed and Ia have been left with more permanent damage and had to come of biologic treatment as a result. I am working hard though to over come this. I am determined I will get my independence back and be able to walk without a stick. I may not get the feeling back in my leg but I can work with this. Along with work I decided to not travel to various things mainly lacrosse because I felt I would not be supported and I would not be able to prioritise myself.

I have continued coaching lacrosse at schools, universities and with Scotland. I gave up working with the senior team and focus on working with the goalkeepers in the U19 set up which has been so rewarding. The U19 also brought me all sorts of things back from their World Cup which I was gutted I couldn’t go to- mainly due to poor communication from the seniors letting me think something different but then it turned out I was in hospital too for it. I am looking forward to this year and being back with the U19 Scotland team. I am still coaching at schools and picked up a 2nd team at Edinburgh University so now coach the 2nd’s and the 3rd’s. I am loving coaching and find it so rewarding.

Research and advocacy as always has been a big part of the year. In fact travelling to a huge advocacy conference in Dallas was life changing. The HealtheVoices event was something else. I loved every minute of it. I made so many friends and realised that I am not alone in what I am trying to achieve. Speaking about your own experiences and how to navigate living life with a chronic health condition is beneficial for others. You can make changes even if they are small. I will be forever grateful for my time in Dallas. I also had other events where I was presenting including some pharmacuetical internal events, wider NHS events where I made some great friends and we are going to try and pull off some great things this year, went to Madrid for the European Respiratory Society Congress where I had a poster accepted for the patient day, presented a poster at the AUKCAR ASM as well as some other virtual events too. It has been busy and I think will only get busier this year. I have been able to write for a pharma company who have a website called Life Effects where I can write articles about my experience of living with severe asthma. Off the back of HealtheVoices I became a PEARLS Ambassador through the work of Rick Guidotti which has been great and have got to know some of the other ambassadors too.  So far I have several events planned for 2020 that I am speaking at and I am sure there will be more as the year goes on.

The biggest part of this year has been getting Ghillie. Ghillie has been life changing. I cannot believe that I got him in April. I cant imagine life without him now. He is achieving so much and is always there for me. I will do a post just for him to update on how he is and what he is doing. I never thought he would be as good as he is now. He can be a total monkey but then when I am not feeling good or am struggling he is there to comfort me and help me with things. Topping the year off with him being a feature in a newspaper article all about what his role is as my assistance dog.

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What are my hopes and aspirations for 2020. I want to continue as I have with 2019. Focus on my health and do what I need to do to ensure it can be the best it can be. I am sure like with 2019 there will be hospital admissions, hard times, illness, frustrations but I can over come them. I just need to be patient and work my way through things. I want to grow my toolbox of skills that I can use to better myself and use my experiences to help others. My friendships this year have suffered a lot- mainly because I have struggled so much and been so unwell that I cant attend things so I end up bailing on friends and they get bored with me always cancelling so don’t invite me to things anymore. I want to try and change this and make a real effort to go to things. I value my friendships so much and don’t want to lose anymore.

2020 is going to be a year of positivity, focusing on finding my best self and feeling content with life.

I hope everyone has a fantastic 2020.

Live the life you want to live.

#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