The NHS Long Term Plan

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No one can have missed the news recently about the NHS Long Term Plan for NHS England. Even those of us not living in England can’t miss it!!! I know I live in Scotland so it does not impact me directly but I am pretty sure the Scottish Government will take on a lot of the plans for the Scottish Health Service that are talked about in the NHS Long Term Plan.

The biggest thing that I have noticed in the news, on social media from news agencies is surrounding smoking and the help that is going to be given to people who smoke that are admitted to hospital. Any time I see anything about the plan this is what I see and it just angers me so much. I know I am not alone either as have spoken to many people who are in a similar position to me with their lungs that are frustrated and angry about it to. For me what it me most was that along with the national news agencies and NHS health boards tweeting about it, my own local health board posted (once again) about how they were going to give smoking cessation help and advice to patients admitted to hospital.

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I know this is a very good step etc and that people who smoke should be offered help to stop however on a daily basis just to get into work I run a gauntlet to try and avoid breathing in any smoke. The NHS made a huge deal about how their sites were to be no smoking sites and that smoking is banned on their sites yet nothing is done to enforce this. They have signs everywhere yet those who smoke just stand by them and light up. Some don’t even wait till they clear the door before they light up. This is not unique to me and the hospital I work in. I regularly see on different forums asthmatics saying they had to go to hospital but just trying to get into the hospital left them in a worse off state than they were when they arrived in the car park etc because of all the smokers they had to pass.

Until you have put up the fight of your life just to get a breath in you cant understand what it is like. It is one thing when you may have been a bit silly and done something stupid which provokes an asthma attack but when you have done nothing other than try and get into work and you end up in intensive care it can leave you feeling really angry and bitter.

What I would love to see and so many would love to see is the smoking ban being enforced or at least a shelter to provide those who smoke a place to go and then leave areas such as the main doors to the hospital as a safe zone. Also when there are the groups of people congregating outside the doors of the hospital- many of whom are patients why are the smoking cessation nurses not down there encouraging them to not smoke or at least smoke in an area which won’t risk killing people.

What is worse is that the main doors to the hospital I work in which are always flanked by people smoking, are over looked by 3 of the four bedded bays in the respiratory ward so during sweltering summer days you cant have the window open because you end up with a room full of seconds hand smoke.

I am not alone in how I feel and what I think which is why I am writing this. I am at a total loss as to what to do because everywhere I try and get the issue addressed cant give me any answers. Is it going to take someone dying from an asthma attack as a direct consequence of people smoking outside hospital doors for action to be taken?? I have got in touch with ASH, Unison, local MP none of whom could give me an answer or willing to take action.

My working hours are 9am to 3:15pm, I have a blue badge due to the severity of my asthma so can park close to the hospital however I have had to start arriving earlier and earlier so I can have the time to wait till the doors are clear of people smoking and then take my chance. This time is different each day but it shouldn’t need to be done. There is then the reverse when it comes to leaving work however I tend to end up just trying to get out and get to my car, once in the safety of my car I can have some nebulisers to alleviate the effects the smoke has had on my lungs. I just wish those who smoke understood what they were doing to others.

It is so hard to see so many struggle. I have read how people feel like turning back and missing their hospital clinic appointments because of people smoking at the doors and the risk this poses to their health. This should never be a choice that someone has to make.

It would be great if others could share this and try and get change to happen.

If the NHS are committed to help people stop smoking, then they need to be down there with those who are smoking not up in offices making plans. Smoke is not just effecting those smoking but also others around them and not only those with lung disease either.

Please lets try and get things changed. I don’t want to risk losing my job (which could be a real possibility) because I have once again ended up in the intensive care unit as a result of people smoking where they should not be smoking.

#stopsmokingonNHSsites

Trauma of ICU

Finally I am able to sit down without getting upset or terrifying myself about my latest hospital admission specifically experience in ICU. The photo below may not look like much and you may think its a window and building but this is what has caused me to much trauma.

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Before anyone reads on please note this is just my feelings from it and my experience. The staff: nurses, support workers, physios and Dr’s were all fantastic and could not do anymore to help me.

This admission has rocked me so much. A lot more than any other has and I hope that I won’t ever get like this again.

There was a series of events I think which led to it all becoming too much once I got back to the ward and I guess basically I just broke down with fear that my asthma will kill me.

The lead up to being admitted was really rapid, as I said in my previous post where I spoke about the admission and how it went broadly speaking. What I didnt speak about was the true mental toll it took on me.

As with any trip to ICU in the back of your mind you know its not good because ICU is the end of the road in terms of hospital care you cant get any more treatment beyond what they an offer. I have been to ICU so many times, I cant even count the number of times I have been admitted there and come out the other end.

Once up in ICU there was the usual battle of trying to get a arterial line in which again failed and we decided to stop short of a cut down thank goodness as this caused me to lose the feeling in my left thumb and part of palm. High flow oxygen running various IV infusions and I had this feeling of being safe. I was in ICU and would be ok. Next came review from the consultant who said if things did settle next step is being intubated and ventilated.  I have had the said to me several times so I didnt think much more about it.

It was not until I came back to the respiratory ward that mentally I really found it tough. After starting to feel much better and access being an issue I was keen to be weaned off some of the infusions I was on. This didnt go to plan and a few hours after I really didnt feel to great so I let them know. Junior drs came to review and were concerned. It was late on in the day and about 7pm my own consultant came round to review me- that in itself freaked me as he was not even on the ward team but he came through. He wanted everything put back to the previous doses, have a whole load of nebulisers and be moved to the high care bay for close observations.

It was the move to the high care bay that brought so much flooding back and I felt that I just couldn’t cope at all. I have been in the high care bay before and never had any issues. I already felt quite on edge because by this point I had been seen by 2 consultants out of hours who came to listen to my chest and see how I was, have all my medications increased again and being moved. The move was what was enough to tip me over the edge. Once moved and settled I looked up and out the window and could see the ICU. The photo from above is below and I have marked where the ICU is.

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The combination of what the consultant said in ICU, and then getting worse on the ward and having consultants review me when they would not normally see you come in to review you and then seeing ICU again and the Dr’s talking about taking you back there was just too much. I think it was also because on the ward I was on the maximum treatment for my chest and just not getting better. The consultant was worried because I had been given 36mg of salbutamol via nebulisers with little effect. Thankfully they kept persevering and my airways did slowly start to open and breathing became easier.

Its fine when you are acutely unwell and everyone is buzzing around you making sure your ok, listening to your chest, giving you nebulisers, doing your observations you dont get much time to think or worry about not being able to breathe. Its once your that bit better and left alone and normally left with the parting words- “rest and try to get some sleep” and the lights go out. That is when it hits you. Still feeling not great and still finding breathing a real challenge sleep is the last thing you are able to do. Its a very strange feeling when you are so exhausted you want to sleep but scared to sleep at the same time. Being in the dark makes everything much worse and I just got so scared. I couldn’t help but break down. I was able to speak to a nurse but they could not offer much as its not like there is a magic pill that makes fear go away and because of my chest not being great they cant give you anything to help you sleep. At night with less staff around at night they don’t have the time to stop and speak to you and make sure your ok. but at that time it was all I wanted. They did then send a nurse practitioner up who was great but even he said that the psychological support at night was awful and as nurses we are not good at dealing with things unless numbers tell us something.

Over the course of that night as my chest came and went some nurses kept coming and saying to me all my numbers were looking better so I am doing ok. I think this is one of the statements I hate more than anything. I don’t care that my numbers may be ok or better I still feel like crap and having good numbers does not help with the crippling fear I am experiencing.

Once morning finally came around I felt really stupid for getting so upset but was able to have a chat with the Dr about it. I knew it was a vicious cycle of being upset, makes my breathing worse, which makes me more upset as I get scared it means going back to ICU but it is so hard to get out of that cycle.

The fear of what happened is still plaguing me. More so than normal. I can rationalise going to ICU and the need for their help but this time is just different and I cant get it all out my head.

I am a week out of hospital now and really feel like I am no further forward than I was day 1 post discharge. Everything feels just as hard. I have no idea why. Part of me wonders is it because of the biologic therapy that is making it harder to recover or has this all taken a much larger toll on me than I expected.

I have clinic next week and I hope to go through everything with my consultant and make sense of it all. I also hope he will have a reason for me feeling so rubbish despite being home from hospital.

I think this whole thing has just highlighted that no matter how many asthma attacks you have, or how many hospital admissions you never know when you will hit breaking point or when you just cant keep fighting.

Chronic Pain with Chronic Illness

I get my medication each week in a dosette box made up by my local pharmacist. I take so many medications that when I am not well I find it hard to work out what I have taken and what I still need to take. I now don’t need to think about what I take, I just pop them out the relevant space and swallow them down in one.

Today I noticed something though. There were 5 unopened pods from this last week. The 5 unopened pods were all my lunchtime doses of pain killers. I had not been aware of deliberately not taking them but because I was not aware of not taking them then that means I was not in pain and needing them.

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Chronic pain is one part of my health that I shunned for so long. I had always had this perception that I was weak because I was in pain and also was very aware that the Dr’s may think I was just attention seeking or drug seeking. I think I thought this because of the number of times I have seen and heard the conversations had when people come in to hospital with abdominal pain with no real cause and the suggestion of it being psychological or drug seeking.

For many years I lived with pain in my chest specifically the left side of my chest/lung. Part of me didnt want to acknowledge it and if I didnt then I would be ok but then it was harder and harder to function due to the pain I was experiencing. It was one hospital admission when I was in ICU and due to staffing I was being looked after by an ICU advanced nurse practitioner. I think her experience of being a nurse and seeing patients in pain she could tell what was real pain. I had not been asking for pain killers but she could see me wincing and struggling. It was only after she spoke to me about it that I finally admitted to the pain and feeling I had when I took a breath in, the pain was not nearly as bad when exhaling but felt like something rubbing and stabbing when I inhaled. It was from then I spoke up about it and we looked into what was causing the pain. From then I have reluctantly taken painkillers regularly.

Further investigation was done into the area of my chest where I had the worst pain. X-rays showed I had previously fractured some of the ribs- most likely occurring due to coughing and my slightly weaker bones but it didnt show anything major that would explain the sharp, rubbing pain I would get when breathing in but didnt hurt if you pressed on it. I had a CT scan which revealed why I was so sore. A lot of scarring in that part of my lung but also the pleura didnt look normal and the Dr thinks this is what is causing the pain and rubbing feeling. I have never really had a bad bout of pleurisy but the Dr said the way I was describing it the pain made them think it was pleuritic even though I didnt have the infection etc to go with it. I was told that the cause has most likely been due to the infection, trauma and recurrent asthma attacks over the years that have never really had much time to recover before the next thing hit.

Managing pain with a lung condition has really been a big struggle. Certain drugs are out of the question- non-steroidal anti-inflammatory drugs are a total no no and I learnt the hard way when I decided to try ibuprofen gel on my skin but had a full allergic reaction to it (I thought it was just if I took the pills). The aim with pain control is to eliminate pain and allow everyday function which is what I tried to achieve but have never been able to do. To get optimal pain control meant side effects which often meant feeling dopey. I got onto a regime using co-codamol and nefopam which helped although during the week I would use a lower dose of co-codamol due to it making me feel like my head was in the clouds but this meant by the end of the day I was in so much pain. It would feel like the outside of my lung was on fire- no matter how gentle you were you when you took a breath in the pain was the same. To control this part I had oral morphine that I could take at night before doing nebulisers and physio. I went with this regime for a few years until I saw a Dr who decided I should be switched to prolonged release morphine rather than the nefopam, co-codamol and oromorph mix. I was reluctant about this as had a handle on what I was doing and although the pain was never gone it was far more bearable.

The Dr who thought outside the box was a consultant who I had not seen before but was a respiratory consultant. He asked me about the pain and what it felt like, and also what was important to me about everyday function and that if I could I didnt want to be taking painkillers you can get addicted to! I was only 30 at the time and was already taking more painkillers than I liked and it was a worry for the future if I did something that needed pain relief I had this image that they would think I was a junkie because would need a higher dose of painkiller than I should. The Dr said his main concern was getting the pain under control for me to function and be relatively pain free but I should not be on prolonged release morphine etc due to it suppressing your respiratory effort which I can afford to do. I was so happy to know I wouldn’t be taking the MST anymore but a little worried about what I was going to be taking as could not go back to the pain I once had.

The Dr suggested lidocaine patches to wear topically on my chest where it hurts to see if this helped the main as he felt there is most likely nerve involvement and the whole area is constantly irritated which is why it is always sore. He did joke that you cant rest your lungs like you can a sore leg to let it get better!!

So a new regime of painkillers started which was the lidocaine patch, co-codamol 4 times a day and then the oromorph for when my chest is really bad (they also use it for breathlessness to). Since starting on this regime I have been stunned at how the patch has worked. It doesn’t take the pain away totally and the Dr said this is good as it means it will let you know when to stop!!!

Most recently since moving to my new consultant and being kept on the higher dose of prednisolone the pain in my chest has been no where near as bad. Instead of going through 2 bottles of oromorph a month I don’t even use a whole one and as I noticed last week I have not been needing my lunchtime dose of painkiller either. I am so happy about this. I have always had at the back of my mind I want to get off all painkillers so having a week of less pain and not needing the painkillers is great. When I see my consultant next I am going to ask if we can maybe just drop down on the dose of painkiller with a view to stopping them and just having the patch and maybe the oromorph for emergencies!

The lidocaine patch has been life changing- I do not understand how it works really but it works so I don’t care. I try not to wear them at the weekend to have a break and just keep them for work and weekends when I have lacrosse or something.

With each day that goes by just now I am in no doubt that I made the right decision to move consultant. If I didnt I am pretty sure I would have been in hospital by now. Staying on 20mg of prednisolone has got me through a chest infection without needing to increase the dose just a few extra nebulisers and antibiotics. Obviously 20mg of prednisolone long term is not good but I am hoping that as the mepolizumab starts working I will notice the difference and we can reduce the prednisolone!!

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.

Happy Birthday NHS

Today 69 years ago the NHS was created. A vision of the government and Clement Attlee which would provide a unified health service available to all. The campaign and implementation was spearheaded by Nye Bevan who can be quoted saying:

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I really do owe everything to the NHS and it is scary to see how the Conservative party are really making some difficult choices and actions which are really putting stress on the NHS which is a health service already on its knees.

It is a huge compliment to Scotland whose health service is by no means perfect but reading tweets this morning which said the Scottish system should be the road map for the health service in England, with that being said in newspapers headlines were slating the Scottish health services and hospital due to the number of beds being blocks and operations being cancelled. Its tough to see as I am both a service user of the NHS and employed by the NHS. I have also had experience of the NHS in England and there are huge differences which could be down to those who run the systems- the Scottish Government and British Government.

As an employee of the NHS I must say it is a fantastic organisation to work for. I have been very fortunate in my treatment by the NHS, I have a pension with them, receive a wage and have the support of colleagues but it is so hard to sit back and watch as wards are under staffed with not enough nurses, drs, domestics, care assistants and everyone is run off their feet all the time trying to cater for the needs of everyone else but not able to take the time out they need. NHS nurses have been subject to a 1% pay cap (along with other professions) which has crippled a lot of nurses who have families, mortgages and just trying to cover their bills. The 1% cap being lifted would make a huge difference because it would not only makes nurses lives more comfortable but it would be their effort recognised and help them feel valued in what they are doing.

As a user of the NHS and dependent on the NHS I really value them. I have gone from growing up in Scotland where because I was in school and under 18 I got free prescriptions so didnt need to rely on anyone for my medications and inhalers. I was guaranteed to get them no matter what. I then went to living in England being self sufficient and having to budget to include my growing medication list. At the time the cost of a prescription was £7.20 per item. It has gone up a huge amount now but this was about 10 years ago. I was on a huge number of medications and often needed multiple prescriptions of certain medications. It became a budgeting nightmare. I was fortunate that I was able to buy a pre-payment certificate so for £110 every year I was able to get all my prescriptions covered with it. Now living in Scotland prescription charges were scrapped which for me has been a real benefit as I have so many medications and currently have 32 regular items on my repeat prescription which is the medication I need every day. While free prescriptions for me are great I can imagine them being abused for some people who will go to the GP for something and get a prescription rather than spending the money themselves. A number of medications which people get on prescription could be things which can be bought over the counter but because they are free on script they go for that option putting more stress on the GP system.

I have also had some outstanding care from a variety of medical professionals. All hospitals across the UK have been great. The care I can’t fault especially when I was in hospital in Winchester and having my consultant from Southampton driving up after he finished work to review me as we were struggling to get control of my asthma. It is things like this that stick in your head and you won’t ever forget. Its also nursing care too. I can remember being in the resp ward Shawford Ward after coming out of ICU but finding it hard to breathe but being too terrified to go back to intensive care, but a nurse from ICU came to sit with me and go through why I didnt want to go back and reassured me it would be ok. She didnt have to do that but she did and it made a difference. It too sticks in my mind and when looking at the prospect of going to ICU I do think about that time. Not all hospital experiences are good and there are times when you do have bad nursing or bad medical care but its going to happen when services are stretched to the point of breaking.

It is scary to think that we really could be facing a time without the NHS. Im not sure how I would survive without them. They have been there to pick up the pieces when my asthma has kicked off. Looking at some numbers a night in ICU costs £2000 approx. I spent 4 nights earlier this year. I wouldn’t be able to afford that if the NHS is privatised. £500 approx for a night stay in hospital. I was in hospital for 3 weeks earlier this year. I would need over 1/2 a years salary to cover my hospital stays not including the added extras like x rays, bloods, IVs, drugs, food to name but a few.

I owe my life to the NHS as do so many other people but with so many people abusing the NHS and going to hospital for a sore tummy or headache, or cut finger when not needed is crippling the service. As a nurse I can’t say to people why did you bother going to the hospital because this could have been dealt with at home, we have to smile and provide the care we would give to other patients and hope their Dr will discharge them when required so the bed can be opened up for someone who really needs it. I often question going into hospital and calling an ambulance. If I can I will drive myself to hospital but am often told I was stupid for doing that and should have called an ambulance because people who were a lot less in need would call them but I feel if I am able to get myself there thats what I should be doing and if I can deal with my asthma at home then I should and do all I can to stay at home so to ease the burden on the stretched heath service.

Please stop and think if you do need the GP, or hospital or prescription. The NHS is on its knees but as a country we wouldn’t be able to survive with it and healthcare would not be accessible to all as it is now.

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Acknowledging one man and his team.

For years I have found I have had to battle and prove myself to my sports coaches if I am wanting to play in a team, also prove myself to teammates that I won’t let them down if they pick me over another player who would 100% be able to last an entire match.

I guess this fight started when I remember as far back as 2003 when the team was being selected for the school tour over to the east coast of America. I was taken aside and spoken to that if I was selected I had to prove I was well enough to go and play the matches. Until then I never thought my position in a team was judged by my health rather it was my ability and skill playing the game. I guess the only exception to this was ski racing where without sounding arrogant and big headed there was no one in school who could come close to my times. Now looking back on it I can see that my position was always given to someone else if I had recently had an asthma attack even if I was given the green light to play again. I would often be missed off team lists altogether. Despite turning up to all training sessions even putting in extra hours of skill work and extra hours of fitness it felt like it was never good enough.

Even playing club sport I would be questioned about if I was fit enough to play and if I was sure. Even if I had the green light from respiratory I would still be questioned and people didnt feel safe me playing. It really made me feel pretty down as I would do all I could to get the green light from Dr’s, attend training but still it was questioned.

But I must say that all changed and it all changed for the good!!!

I wrote a while back that I found myself in goal again after 18 years playing out field in lacrosse I was once again between the pipes. After that first tournament  when I wore all the goalie kit we had and looked like an american footballer (i do not do this now as found it actually made less mobile).

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I found myself enjoying being in goal and found I could play and play a full hour with no bother on my chest and not be a risk to the team. As I knew this was a position I could play and the enjoyment I got from being part of the team again was great, I knew this was for me but I needed practice! Thankfully there was a Development day led by the Scotland national coach which I went along to as the more time I could get to practice was only going to make me better (and a bit more bruised). I was shocked when I was asked to stay for the second day which was for people trailing so I stayed. The weekends to come I stayed for the second day with the aim of trialling for the B team. I had to be upfront about my chest as this was not the place to hide it and there was no way I could do the fitness or keep up with the fitness that the rest of them were doing. For once the coaches were alright about it and understood. It was the first time a group of coaches understood where I was coming from and didnt force me to do something I knew I would fail at. I was really excited at the prospect of trialling and felt it gave me a purpose again to get better and try and keep on top of my asthma and not let it dictate my life.

The final trialling weekend I was devastated when I ended up in hospital. I think I was more upset at the prospect of being on hospital for the trial weekend than I was about my birthday, this was how much it meant to me. I didnt tell anyone this but I guess i can now because it all turned out alright in the end. I accepted that once again my asthma had stopped me doing something and it was good while it lasted so had to be happy with that. In all honesty I don’t think i really dealt with the emotion of it all but because the previous admission was so scary and also the start of this admission has led to a formal complaint going in so my thoughts were all with this rather than the fact that I missed the trial day.

I was over the moon to see that I had been picked to represent Scotland in the B team for Home Internationals down in Surrey in April. I thought it was all over when I was in hospital so to say I was over the moon would be an under statement.

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I owe a huge thanks to the coaching team at Scotland for giving me a chance. This is the first time in as long as I can remember that despite my asthma I am being given a chance to play and the what if’s are not being asked. I guess this has given me a new lease of positivity and renewed fight where before there really was not much to fight for. Next weekend there is a coaching weekend which i am looking forward to as really starting to feel better after the start of the year which was interesting but having positive news and a goal makes it so much easier to get back to it.

Tomorrow I go back to work for the first time in 2016 which I am looking forward to as have been very bored. It is a quicker return to work than normal after only being discharged just under 2 weeks whereas normally I am home 3 weeks as recovery takes a wee while but its time to go back before I go barmy with cabin fever!!!

If I am honest I have not got my head around what has happened at the start of this year but knowing that someone has faith in me keeps it going. I owe a huge thanks for  this but also the inspiration that the Scotland coach his. His passion for the sport makes you want to do your best and play well. It is like its contagious and totally infectious you cannot help but love lacrosse when you are around him and his team of coaches.

The rest of 2016 is going to be a good year!!!

Small steps will make big changes.

Today has been one of those days where bits and pieces happened and the end result should make a huge difference.

Today was a particularly bad day breathing wise. I knew I was starting late for work as I was due time back but nebbing hourly from 5am was not the way I planned to spend my lie in!! So not a good start. The day physically didn’t change much for me. It almost felt suffocating at times. It was hard but I got through the day and remarkably in the last hour my breathing has eased up….40mg of prednisilone will do that I guess and some painkillers!! But thats not the point of the this post.

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So I was saying lots of little things happened today which were all totally unlinked and all events/ emails/ letters were from different people who have no interaction at all but everything happened during the course of today (I am superstitious and since my Uncle died odd things have happened and I just wonder if he is responsible for today….dont laugh. I used to laugh at people who had thoughts like that until it happened to me).

First off I read the first of many emails regarding the volunteer stuff I do from AUKCAR. The email meant a lot. Much more than the person who sent it knows. I comment on PhD’s students participant information letters to make sure they are appropriate and could be understood by those targeted. I really enjoy doing this. But the student emailed one of the PPI team about the feedback. This team member then emailed to say how much my help was appreciated etc. It was such a positive email and really made me happy. I love doing what I do and even if I got no feedback about what I did I would still do it. Being able to do something I enjoy and knowing it is helping someone else is so rewarding. Much more than fundraising. So this was the first thing.

I then read another email about a Long Term Conditions report which I spoke to a member of staff about and although I don’t want to mix what I do with my outside life and work together I think the results from the report are really pertinent especially given our work is dealing with patients who also have a long term condition.

It was also great to see our Young Patients Group starting to evolve and dates being set for focus groups but not much to say about that.

The last thing I guess which is what role everything from today together is that when I got home from work to open my post I had a letter from the Royal Infirmary. I hate getting letters from them because it is either for appointments with respiratory or cardiology, occupational health or charge nurse doing promoting attendance to work meeting. To my relief it was none of the previous. Instead it was from the consultant researcher leading the PACT study in Edinburgh. Basically putting together care plans for people who have a long term condition who end up presenting acutely unwell to A and E. This care plan is meant to aid Drs treating people. To me this is a massive thing. When I lived in England I had one and it was followed very closely, since moving back to Scotland I have had nothing and this has made some A and E visits very difficult. The care plan along with all the important things like how to treat me, a little bit about my asthma, my medication, allergies etc it also has a bit about patient preferences which is almost the most important part. For example 2 things on mine which can make an admission very stressful is Drs trying to guess what your saying and also them fighting for an artery for a blood gas and not listening. My right wrist a vein runs over the artery so always yields a venous sample. My left wrist is so hard and scarred that the needle bounces off the artery so brachial ABG’s or femoral stabs need to be done. Most Drs won’t do brachial because of clot risk so it can sometimes be distressing trying to make them understand. Having an ABG is not like having a normal blood test where I don’t care where they poke about- it doesn’t hurt so they can suit themselves.

So this was a huge positive thing to know I have this care plan and to know it is now on the hospital computer system so whenever I am admitted the Drs will have easy access to it. That was not the only good thing to come in this letter.

The researcher also mentioned that he had spoken to my consultant who wants to meet up the three of us to go more in depth about the best emergency treatment but also the researcher mentioned about my involvement with AUKCAR. I had not told con about this not because I was hiding it but with him being new I just had not had time in appointments. So he wants to meet to discuss it further to as he is interested in it. Which is great especially after I had a rather cool reception about it from people previously involved in my asthma care.

I feel that all these things today are little steps all completely separate but all so closely linked to one common cause and that is to make asthma control better, better self management and ultimately better patient experience and a better patient/ asthmatic. It just so happened it all happened today but I was glad of it. It made me even more focused on wanting to continue doing what I do with AUKCAR and grab all opportunities with both hands. In the past people have been cautious and not wanting me to do too much as I am a volunteer but I love doing it and being affected by asthma so much, to know that there are people out there trying to make a difference for people like me. If I can help researcher to understand better, or give advice, or just show where the weaknesses are in asthma it makes it so worthwhile. I don’t really even have to force myself to sit down and reply to emails or comment on abstracts or information leaflets, it just comes and is enjoyable.

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Although today has been a real struggle with my asthma mentally it has been really good with little bits of things filtering through. It is hard not to get down when every breath feels like you are breathing through a tight straw with a close peg on your nose but people taking the time to thank you for what you do means so much.

There is a lot coming up in the next few months conference calls, cross party group meetings at the Scottish Parliament, focus groups, PPI sessions and I need to write a couple of things to. So loads to keep me busy especially on these long nights where sleep is hampered by predsomnia!