Smoking on NHS sites- it is STILL happening!!

I know many of you will think I sound like a broken record particularly as I have written several blog posts around the issue of the smoking ban on NHS premises. The first of my posts was back in 2015 on April 2nd. written after legislation was passed by the Scottish Government to implement a ban on smoking on NHS hospital sites. This came into force on the 1st April and must have been an april fool as it is still not been addressed. The links to other posts surrounding smoking on NHS sites are:

Over the course of time I have been in touch with various different outlets and services to try and get action taken on the issue of continued smoking on NHS sites. The situation for me has only go worse. It appeared that every day there were more and more people congregating outside the main doors of the hospital smoking. This could be a mix of patients, visitors and most shockingly people who worked in the hospital.

For me it got to the point that even coming to work half an hour early was not enough to avoid the people smoking. Eventually it made the choice on stopping doing clinical work easy as it meant I would not be putting my life at risk just to get into work. In fact the other week I had to go to the Royal for a ECHO of my heart, I called to have this rearranged because already feeling very chesty and unsure if I was going to need to be admitted, I saw this huge group of people smoking right outside the doors. I couldn’t risk going past. It may have cost the NHS some money by me cancelling last minute my appointment but it is far less money than the amount of money that would be required for me to go to A&E, +/- ICU, and the ward all because I tried to get into the hospital (a plan of safety I might add) to attend an appointment. In an extreme view the select patients that are smoking are preventing a group of patients accessing healthcare safely. What will it cost for this to be addressed.

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(Photo above was me after having an attack trying to get in to work a few years back)

Clearly legislation being passed in the Scottish Government is not enough. I am unsure why the issue is so much worse at the Royal Infirmary of Edinburgh than other sites in Edinburgh.

If the smoke did not have such a bad effect on my lungs physically I would go up to people and tell them they cant smoke there and they need to move off hospital property but that is just asking for a hospital admission for me. I think what makes me really angry and disappointed is that no one is willing to address the smoking issue.

I took the opportunity when there was uproar about parking and parking provision to use this to voice my concerns about the smoking. I got in touch with various MSP’s and had some great feedback from them and help from them however I am totally disgusted by NHS Lothians response. They wrote a letter to my MSP which basically says what they do just now is enough and no more can be done. What they said they have done is:

  1. Provision of support for patients, staff and visitors who wish to give up smoking
  2. Provision of advice regarding medication which helps manage nicotine withdrawal
  3. Promotion of education and training for managers and front line staff in the implementation of the policy

What strikes me with these actions is that it is all about what they are doing to help those that smoke nothing is there to help those who do not smoke and are being affected by those smoking. The actions are also leaving it up to the smokers to get the help. They are not actually doing anything to stop the smoking in places that are meant to be no smoking. The letter also sited the design of the hospital means that people are likely to congregate at the doors to smoke.

To say I was shocked, appalled at the letter is an understatement. The over riding emotion though was disappointment. My MSP had put that one of the reasons for me not working at the hospital just now was due to the issue of people smoking but this was not even mentioned in the response. There was a line that said they were sorry I felt the need to report this complaint and they apologise for the distress and inconvenience this has caused. Distress and inconvenience is an understatement- they clearly have no idea about what going to intensive care is like, what fighting for your life is like and knowing that the very place that saves your life is also the very place that could take your life too.

I have no idea what to do now. Will I be able to return to work in the hospital if this issue is not resolved? I don’t think so. I love my job, but I love my life (most of the time) and if doing my job is going to kill me can I really justify going back to work.

I will spend as much time as possible to try and get this situation the attention it deserves because there is no way it can only be me that is suffering. There must be hundreds if not thousands of other people being bothered by this.

Below are links to some posts I have written around about the issues I have dealt with to do with smoking and people smoking on NHS sites.

23 days on and its only got worse is a post I wrote 23 days after the so called smoking ban came into force. It appears to have only made things worse. I am not one for advocating smoking but the removal of the smoking shelters has made things so bad.

Returning to work in a fog of smoke is about returning to work after having an asthma attack as a result of second hand smoke. Reading it back I get quite emotional as I was struggling to accept that I had done nothing to myself to end up with lungs like this- often I wish I had done something like smoked as then at least there is a reason for my lungs being so bad.

Smoking on hospital sites reflecting back and just finding the issue getting worse and worse. Also thinking of ideas of things I could do that would maybe have some effect on those smoking that they would not like much like their smoke has on others.

Bad weather makes smoking worse

Passive smoking what does it mean

The NHS long term plan

Parking is not the only issue at the RIE

 

SoulKraft Wellbeing Radio Show 10.07.19

Last night I had a totally new experience. I was a guest on a radio show. I have done radio interviews before but they have never been in a radio studio with the headphones etc on so this was all a bit new and exciting! To listen to the show follow this link

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SoulKraft Wellbeing Radio Show is a weekly show hosted by Lauren on Stirling City Radio. I was put in touch with Lauren via a mutual friend but we were also at the same school. Lauren’s radio show focuses on mental wellbeing and has a sub topic each week focusing in on part of mental wellbeing such as creativity. You can read more about Lauren, her blog and radio show here.

To say I was a bit nervous would be an under statement because I have never been the best with words when speaking about my own health. I can write it and I can speak about the surrounding topics such as asthma research, new asthma medications when giving presentations but the last few times when I have spoken about myself and how my asthma has impacted me I have ended up in tears in front of a whole load of people, so I was hoping I was not going to do that while on the radio. I have also never spoken about my view on mental and physical health. I have written about how a physical health condition has impacted my mental health but never really spoken about it and also not spoken about how I view health as a whole.

It was great to be able to speak to someone who has had such similar views on health but they come from a predominantly mental health condition where my initial diagnosis was a physical which has impacted on my mental health.

Reflecting back and listening to the show has been really cathartic and in a way given me a new lease on life and advocacy. It has made me realise that health is just health wether it is physical or mental. Part of me really feels that all this attention being given to mental health may just be stigmatising it even more now. There is a lot of press given to mental health because it is chronically underfunded but why is it. Mental health conditions just like physical health conditions sometimes cannot be prevented and sometimes can be prevented, all conditions can be treated with pharma input or using other approaches there is no real difference (I get that this is being very generalistic but when you get to the nitty gritty of all conditions they are complex and hard to manage.

I want to try and spend some time promoting the impact that living with a chronic (sorry Lauren) health condition can do to you holistically. I say holistically because that focuses on the whole person not just the one organ or organs that the condition effects.

Thank you again Lauren! If you want to listen to the radio show

 

Looking back at #HealtheVoices19

The past few weeks have been really tough, Im not going to lie but there have been some very dark times and hard times. Although my lungs and breathing have been manageable it has been bad enough to limit what I am doing and I have had to increase my steroids again to get me though. Mentally it has been tough. Getting new diagnosis’s is tough. My last post I spoke about how steroids are the gift that keeps on giving but they are also giving me life so I have to take them.

Social media has been such a good support network for me particularly on days when I just can’t get out and about.

One thing I have noticed is the friends I made while in Dallas are the ones who are always there with comments or free to chat. I cant believe that I only met most of these people for 3 short days but to me I feel like I ave known many of them for ages. I am so thankful for the friendships I have made and just wish I was not the other side of the pond from them as I would desperately love to see them all again. Their support is unwavering. I wish I could give them the same support they give me. I am not sure if they know the impact they have had on me. Every single one of them has their own story to tell, own problems and challenges yet they still find the time to look out for others and wit their advocacy work they are improving the lives of others.

I realised I have not posted many of the photos from Dallas so below are some of the photos from HealtheVoices!!

This is just a small selection of the photos I have from HealtheVoices but they are all part of my tribe. They get me, they know what to say and they accept me for being me and who I am.

Thank you everyone!!

The gift that keeps on giving!!

Many on long term oral prednisolone will be familiar with the saying that it is the gift that keeps on giving. It is the one medication that gives those who are taking it life but also results in many secondary conditions resulting due to the side effects and the prolonged side effects.

I have written before that I have a love hate relationship with oral steroids. My lungs need them but the rest of my body certainly does not. Recently I have felt that the prednisolone just keeps on hitting me in the face with one thing after another from destroying my adrenal gland meaning unless there is a miracle I will never get off steroids, my bones have been leached of all their goodness and now have osteoporosis, my pancreas is affected meaning I have constantly high blood sugar levels, I have had issues with my eyes as well but never to the extent I do now.

For a good number of years now I have had swollen optic nerves. This has not caused me too much bother other than some pretty bad headaches, these headaches have been getting worse and more often to the point a few weeks ago it floored me. I was in bed the entire day, feeling sick and being sick. I have not had a migraine before but thee headaches are what I imagine they are like.

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I went to my optician last October- I was early for my annual check but I kept getting blurred vision at night and the feeling of having a film over my eyes which no matter how much I rubbed them or put moisturising drops still did not ease the discomfort. At this appointment we discovered I was missing a large chunk of my peripheral vision. I did the visual field test a number of times but each time I kept missing a full 1/4 of the circle in my left eye. Obviously this is not normal so I was referred on to the eye hospital with the final consultant visit the other day. I have been having a variety of scans, tests and drops put in my eyes to try and establish what is going on and the appointment was going to be the reveal all and I was hoping it would be an easy fix and also (clutching at straws a little) it would be something other than an effect from the prednisolone.

Anyway I saw the consultant who needs to speak to another consultant because she doesn’t really know what it is that is wrong but there is something seriously wrong. This did not fill be with hope. You go to the consultant because they know these things and can tell you what is wrong but its more waiting for just now while she speaks to her colleague, she is also wanting me to have a head MRI so they can get a better view of things but Im not really sure how that will help them as I don’t think it will show them anything in more details than they already have but maybe it will.

The long and short of it is I have swollen optic nerves but also the outside of the optic nerve is being compressed so the middle of it is bulging out and there is fluid accumulating with it. They don’t know why or how. They are not convinced it is related to my brain as the headaches I get are not consistent with raised intercrainial pressure which is reassuring. So its back to the waiting game.

Pollution and its effect on my asthma

It is well known that pollution makes asthma worse. There has been a lot of information in the press about this and how there needs to be low emission zones in major cities to try and increase the air quality. Recently an inquest ruled that the death of a young girl from asthma was due to pollution exacerbating her asthma which resulted in an attack that killed her. It is scary to see just what pollution can do.

I can see the effects of pollution on my own asthma. Since getting my smart peak flow meter I have been able to track my peak flow for a prolonged period of time. Previously I have always done my peak flow but did not record it (mainly because I am lazy and printing off a peak flow chart on paper was a faff and when I did print it off it would get wet as I keep my peak flow etc in the bathroom with my medication so I just gave up) so having the result blue tooth to my phone has been great.

I have had to ability to print off the charts month at a time or even week at a time if I want. The most useful thing I have found by doing this is the ability to identify points where my peak flow may have dropped or increased and then refer to my diary and see if there was anything that may have caused the dip.

For example the picture below shows my peak flow. The 2 yellow arrows mark when I went to London which shows a significant drop in my peak flow which then increased again once I returned home to Edinburgh. This drop was despite wearing a carbon filter mask to try and protect myself as much as possible.

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I am not sure what else I can do to try and protect my lungs from the pollution in London other than not travel there. The mask I use is high grade, I take my medication, I also try to make sure the windows are shut and I am outside as little as possible so I am not breathing in too much toxic air.

Conversely to this I was recently up in Thurso- just about as far north in mainland Scotland that you can go (except Dunnet Head) where pollution levels are very low I noticed my peak flow actually increased. Perhaps a combination of being at the far north of Scotland, away from major roads, away from major cities with large amounts of traffic and being right on the coast with sea air (sea air has historically been promoted as good for the lungs- it might be an old wives tale).

The chart below is my peak flow and the yellow arrow is when I was up in Thurso.

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I think from this I can clearly see the impact of air quality on my lungs. Edinburgh is a real mixed city as there are some areas which have horrific levels of pollution and other areas that are not so bad. I am fortunate in that I live fairly near the coast and not right in the city centre but it is still fairly polluted where I am.

What steps can I take to improve my lung health and avoid pollution?

  1. I would love to move away to the country somewhere near Loch Tay as I love it up there and the clean air would really benefit me. There is little traffic and no big industrial sites near by. Unfortunately due to the nature of my asthma this would not be feasible as there is no major hospital near me so if I was to have an attack it would be a long wait/trip to get help and to a hpspital
  2. Try and ensure I wear my mask when I need to so I am breathing the best air I can. Despite having a complex about wearing my mask I need to protect my lungs at all costs and if this means wearing a mask then I must.
  3. Keep an eye on the pollution levels and act accordingly. If I know the pollution levels are rising I should perhaps increase my inhalers to counter act the symptoms I may get (I will check this with my team before acting on this).
  4. Get out and about as much as possible down to the coast to breath in good clean air and not stay stuck in the city all the time.

Essentially there is no easy way to avoid pollution but I can see the detrimental effect pollution has on my lungs via my peak flow results. It would be wrong of me to recognise this and not act on it. I must get a plan and put it in place to protect my lungs from more damage which breathing in toxic air might do.

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(Me on the left wearing my Cambridge mask while in London at the Asthma UK Centre for Applied Research Annual Scientific Meeting)

SMC approves Benralizumab (Fasenra)

Today was a big day for many Scottish people living with severe asthma. Many of us live day to day taking medications that do not fully help relieve our asthma symptoms and keep our asthma under control. It can be very frustrating and scary to live day to day not knowing how you will be.

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In the UK medication approval is not universal. England and Scotland have different groups which approve or reject medications which could become part of the NHS formulary making it available to patients.

England have NICE- the National Institute of Clinical Excellence. NICE approved Fasenra earlier this year meaning it was available to patients who fit the criteria for it. However in Scotland we had a longer wait meaning many with severe asthma have been able to see the positive effects this drug has had on people in England knowing that they are not guaranteed it because the Scottish Medicines Consortium (SMC) has to approve it. The last monoclonal antibody Reslizumab was approved by NICE but rejected by the SMC so many were waiting with baited breath today to see what the SMC would do.

It was a huge relief today when I got a phonemail from Asthma UK to say it has been approved. This means there is one more drug out there for those with severe asthma to try and hope that it will be their wonder drug. The weird thing with monoclonal antibody treatments (aka the mabs) is that they work for some and not for others. Just because you qualify for them through your IgE or eosinophil count does not mean that it will make a difference. This leaves many feeling lost and wondering if there will ever be a break for them from living with daily symptoms struggling to breath something no one should ever have to do.

The below is part of the press release from Asthma UK which I contributed to about the impact that severe asthma has had only life and what the approval by the SMC means:

“My severe asthma leaves me gasping for breath, exhausted and unable to even walk down the road. While I’ve had asthma all my life, it worsened as I got older. I had no choice but to take long-term oral steroids at a high dose which has left me with terrible side effects including osteoporosis. I used to be sporty and had my dream job as a nurse but my asthma got so bad I had to give it up. This new drug could transform my life allowing me to get back into work and regain my independence. It’s high time that severe asthma was taken seriously and that everyone who needs this kind of drug is able to get it.”

I was also interviewed for the radio which went out across Global Radio Networks this evening which was also focused on living with severe asthma, the effects medications to date have had on me and what Fasenra could mean for me and many others like me.

I am really proud to have been able to share my story but also that there is light at the end of the tunnel for others. It finally feels like severe asthma is being recognised. It seems that asthma only makes the headlines when a young person dies from an attack which is catastrophic but asthma should not be in the headlines for this, this should not even be occurring but it is. Despite this asthma is not being recognised. Hopefully there will be enough coverage about the approval of Fasenra in Scotland and how many people it may benefit from it that asthma may get taken more seriously and there will be more funding available to help those with severe asthma whose lives are being dictated by a condition that is so misunderstood despite their own and their medical teams best efforts to control it.

For me I had hoped mepolizumab would be my wonder drug. I still hope that it will be but I am not sure. I am still reliant on oral steroids and not able to reduce my maintenance dose, I have had to give up work, have also recently decided to step back from some of my lacrosse commitments all because of my asthma. My best efforts to control it are not enough but there are limited medications available to me that I have not tried which could help me. With each new drug that is approved there is that little bit more hope that one day my asthma will no longer dictate my life and just be a part of my life that does not cause me any problems.