My HealtheVoices19 experience!

Last night I was catching up on reading some blogs and came across one that was written by one of the other people who attended HealtheVoices (HeV) who opened her blog post with my exact thoughts. She had been drafting and redrafting posts about her experiences of HealtheVoices and not knowing quite how to write it. She came down to the point of just getting it out and putting it down in a post. So this is what I am going to do as well because like her I have been going over how to write my experience and then rewriting it and never being happy or knowing quite how to word it.

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So here goes…

Leaving the UK to go to Dallas was a mix of nerves and excitement. The lead up to the HeV event was so positive and the support from everyone was there right from the start so I was feeling at ease but also felt a little is this really going to be like this once I am there too. A small hiccup at the airport but I was soon at the hotel and getting ready to settle in.

There was no real plans for the Thursday night. There was dinner but it was a buffet and you could just go down and eat when you wanted. I am never very good at these things and went downstairs several times with the intention of going in to the dinner room but I kept bottling it so would head back up to my room. I was too nervous, and tired because I was still on UK time and had been up for about 24 hours at this point, but I needed to get over jet lag so I could enjoy the conference without crashing, so I forced myself to go in and join a table. I am so glad I did go down. The slight awkwardness of plating my food and all the time thinking which table should I ask to sit at, who won’t mind if I join them, there was 101 things flying through my head but actually some of those who I had my first meal with in Dallas are also the ones I had my last lunch with as well. I did have that bit of security with me at dinner though- I had my name badge/lable/neck thing so anyone I met knew my name, knew I was speaking but also knew that it was my first time attending the conference.

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When I have attended conferences in the past I have felt at ease, and with each conference I attend and speak at I feel more confident but this was different. When I have spoken at conferences I have been there and what I am speaking about is my specialist interest and my experience, I tended to be the patient giving my opinion of essentially being an expert patient. This was a different ball game. Everyone there was like me, we are all experts at living with our own conditions and doing our own thing to raise the profile and difficulties we face trying to live a functional life.

I have never really thought of the work I do with asthma as advocacy, I actually didn’t like the word advocacy but attending HeV I came away feeling that maybe it was and I was an asthma advocate. People often ask me what drives me to do what I do, how do I come up with content, ideas etc. I never really know how to answer because I have never thought about why I do these things. I just do it because I hope that by sharing my story maybe people or even just one person might be able to take something from it and their experience will be a bit easier.

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It sounds cliche but after my initial nerves everyone was so welcoming at the meeting. Wether you were a first timer or had been at all the HeV meetings in the past everyone was on the same level- we were all there for one reason. Everyone there is motivated to help make a change. There was a variety of people who have had a condition all their life, then some with conditions that vary, go into remission or are cured from it but through their experience they are sharing knowledge gained, experiences which were good or bad.

I still really am struggling to put into words all my emotions from the meeting but I think the photos speak for themselves.

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So where do I go from here??

I have a few projects that I would like to pursue the most pressing one is to try and get rid of all the stock images media outlets are using which are subconsciously promoting poor inhaler technique. Almost every day I see a photo being used on a media article which shows a child or adult using a MDI (metered dose inhaler) with no spacer and even though there is no spacer the technique is not good either. In the UK there is an inherent problem with asthma management and self management resulting in high death levels from asthma attacks which can be prevented. One of these preventions is correct inhaler technique.

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And a last disclaimer:

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Guest blog post: Why being a Volunteer is Important in healthcare?

And how to keep them happy and feeling valued.

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Hi, My name is Mark Hudson, You probably have no idea who I am, that’s ok I’d be surprised if you did. Olivia and I met in August of 2018 at an ICU steps Edinburgh event, Creativity in ICU recovery, it was my first speaking event. I was nervous as talking about what happened to me in ICU is not easy, it is bearing my soul, several people spoke at me. Note that AT me, an ex ICU consultant who basically telling me about what a patient goes through in recovery, arrogant right? Other spoke at me telling me why they where great, Dr Ramsay introduced herself but was very busy so during the event didn’t have the time to talk (which is fine there was a lot going on). So, who was the first person who actually spoke to me? Who treated me like a person, a person whose view was important? Olivia. I don’t have many friend but I make them fast, with me its all in or all out, I don’t have any middle ground. My health issues and nearly dying in ICU made some things clear to me, life is short and as such you should surround yourself with good people. I chose to surround myself with great people like Olivia.

I have only met Olivia one other time in the real world but I am happy to call her one of my best friends. Why I hear you asking? Because we have fought in the trenches of Critical Illness, we have battled ICU Delirium, we have had to deal with life long health issues and we have both made it through mostly intact. Ok so now to get to the point of the blog, I hear you saying thank god, a bit rude but that ok I forgive you 😉

I was given an opportunity to Volunteer after I completed my ICU rehabilitation clinic I was invited to become the peer support volunteer for the clinic it was a big deal to me as it was an opportunity to pay back for the people who saved my life and help to make those who came after me in ICU’s lives a bit better. A chance to make a real difference in peoples lives, this is the main reason why people volunteer in these types of positions. However, it is very easy to take them for granted, after all they are not paid so they are valued as, less right? Well no because you are being paid to do your job, they are giving up their time and experience. So how do you avoid this pothole, well you do somethings my team did with me, you listen to their input taking it seriously and weighting as equal to the other team members or greater depending on the subject. Also inviting them to any Quality improvement meetings you have and treat them like one of the team as they are not a guest they are very much in your team. Other things like remunerating for their travel is important too as why should they be out of pocket for helping you out.

I have now started doing what I call freelance volunteering inside my health board mainly on Delirium so far. This is where I am brought in to talk say at a conference or training session etc. Now these situations are trickier for the people who are bringing the Volunteers in because unlike my clinic experience, I am not part of the team. However, in this situation I am being brought in as an ‘Expert’ now this can be a problematic area as you are often viewed on as a free resource. No other expert would be looked at in that way, it is as if because you are giving your time up for nothing you lose position you become an almost inferior. This is the worst thing you can do to a volunteer because you will make them feel like a failure and not respected, which will make them much less likely to volunteer with you or anyone else for that matter. So, I hear you asking how to avoid this, its trickier, because there is not usually a pre-existing relationship it can be tricky. Here is my ‘guide’: if you are in a faraway or difficult to get to part of a building meet them at the front door; if there are other speakers or ‘important’ team members introduce them and say they have came to help you do x or have Volunteered to show us X it shows they are important; Introduce them before they speak and thank them when they are done in front of the group it shows their value to the group; and at very very least offer to pay any travel expenses because why should they pay to help you.

Ok so the serious stuff aside it boils down to is remember they are a human being put yourself in their shoes and see how you would want to be treated. Remember they owe you nothing, they do not need to help you, that is sometimes forgot. They do not need to give you their time, insights, wisdom or bear their soul to you. They are giving you a gift, its not yours to take or demand its theirs to give so remember that when you are working with volunteers.

Mark also writes his own blog which is well worth a read. Mark is also an avid poet writing some fantastic poems. I have been very fortunate and Mark has penned a few poems for me which I will post for others to enjoy too!!

Mark’s blog is: https://autoimmunedisorderjourney.blogspot.com

Twitter: @MarkThomHudson

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.

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Back feeling confident

After a good few days feeling totally down in the dumps, sorry for myself and thinking the light that was at the end of the tunnel had totally gone out I am feeling more confident and the light is coming back and I don’t think all the hard work I have put in get better is wasted. It was still worth it and this was only a minor set back in a road to proper asthma control and good health.

To say I thought that I was back to square one would be an under statement. I had visions of spending more time off work and more time in hospital and even more time on high dose oral steroids. I was full of doom and gloom and felt the best thing to do was give up. I found it hard not to think like that given my past history for getting back on track and then it all going down the plug. I really didnt want that to happen again but almost felt it was inevitable.

I managed to change my mindset and think that this time I was stronger, fitter and mentally in a better head space that I can beat this and will get back on top and enjoying myself again. I can’t expect to not have set backs and unless I lived in a bubble I would not be immune to getting colds and infections so just need to get on with it and be sensible. After some vitamin C, early nights and anti biotics I am starting to feel better. I am finding my best time of day is the afternoon. First thing in the morning I am not so good and again last thing at night I get this hacking cough but nights are always a bit tricky for me anyway. For as long as I remember my asthma at night has always been bad so for it to be bad just now is not surprising.

I must add work I have done with a psychologist who looks in to coping methods for people with long term conditions has helped as well. Changing how I view set backs and not see them as failure has helped. I would often see a set back as failed to achieve control rather than a natural hiccup that comes with having a long term condition that probably won’t go away. Life is always going to have hiccups but it is how I deal with them is important to recovering and keeping well. Accepting that things happen and sometimes there is no control or no way to stop them but learn from what has happened and take positives from it.

It s easy for me to sit now and write this now but a few days ago I would never have been able to look to the good or rationalise this blip as I have today and I hope that I will in time be able to not see every dip as going back to square one but rather view it as it is.. a dip that will go up again and back to where I was and not a slippery downhill.

Its good to see things going the right way and changing the way I am thinking about it all. It has helped me cope a lot with it now.

Hospital Targets

A friend recently wrote a post about breaching a hospital time and therefore became one of the statistics.

I have been in this situation to and it was for exactly the same reason why I breached a hospital target time and reduced their good statistics!!!

The press focus so much on hospitals missing targets and patients breaching the four hour time you are to spend in A and E. Like my fellow asthmatic who also breached the four hour time in A and E I am glad I did breach.

I had had a bad asthma attack at home. I had to call 999. It had hit me out the blue which are the scariest ones. I had no option but to call 999. It was such a bad attack that the first responder travelled in the ambulance to A and E with us leaving the car at my flat. We had to stop on the way for me to be given adrenaline to try and keep the attack at bay. I was also cannulated and given IV hydrocortisone in the ambulance. This normally happens once in A and E.

Arriving at A and E I was taken straight to resus and jumped on. Not literally but it felt like it. I was attacked from all angles. I had both arms grabbed for ABGs and more access, stickers stuck on me for heart monitor, clothes cut off and gown put on. It was mental. They took 1hr 30mins in resus to get me to a point where I was good enough to be moved into the HD part of the A and E. After a while I started to get worse so was moved back to resus, stabilised again and then moved back to HD. It was decided I needed to go to HDU but they didnt want to move me there until I was going to be stable enough to be transferred safely.

By the time I was moved I had been in A and E for 7 hours. 3 hours over the specified time by the government. I am so glad that there are some people who acknowledge that targets can not always be met. I would prefer to breach a target and be safe than meet a target and be unsafe.

I wish all staff would see this. During the time in A and E the bed manager/ co-ordinator came several times and asked me why I had not been moved yet and also had conversations with nurses why I had not been moved yet. If I had the puff I felt like screaming that I was not well enough, could they not see it. It felt that their need to meet targets was more important than the health and safety of their patients.

I do think that targets need to be put in place but for those patients who require resus or other major intervention to stabilise them should be exempt from the targets. There are always going to be cases which do not meet targets but they are often those who have been very unwell but not unwell enough for ITU.

People who use A and E for Anything and Everything should also not be part of the statistics because many of these people do not need to be in A and E and should wait while those who are sicker  are seen. It is nurses and Drs who are having to see people for cut fingers etc that cause the breach and targets to be missed. If these people used the service properly and as it is meant to targets wold not need to set to try and get the best out our health service.

I see this from both sides of the coin- as a patient and as a nurse. It is a real frustration and one that is never going to change unless the health service is privatised but then as a patient privatisation of the health service would probably see me not being able to sustain my health and I would be in a worse state than I am.

It is a really tricky balance and no quick fix. But one thing I do know is that I am glad I breached the targets to ensure my own safety. If this were to happen again due to my health I wouldn’t complain.

You only get one life at the end of the day.