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.

Being a Health Advocate

and how does it differ around the world??

Last April I was in Dallas Texas attending the HealthEvoices (HeV) meeting. A meeting for health advocates to meet and learn from each other. I went out there thinking I knew what health advocacy was but I was wrong to some extent.

A while back I put the question out on social media “What does health advocacy mean to you?” and I got some very interesting answers. What I found most intriguing was that there was a clear split between thoughts in the UK and then thoughts over in the US and Canada.

Pre HeV my understanding of health advocacy was essentially speaking up for yourself or family member to ensure you can get the best treatment, or best healthcare you can for your condition to ensure you can live as independently as possible and without too much interference from your health condition.

I also thought advocating for myself meant me speaking up to my healthcare providers wether it be my asthma consultant, asthma nurse, GP or whoever and tell them the parts of my treatment I did like, the parts I didnt like and also the things that were important to me in my life. I have spoken before about a period in my life when I didnt like the treatments I was on because of the side effects and the amount it intruded in my life so instead of speaking up and saying this I just stopped taking the medication and didnt say anything until I got really unwell. I thought I was wrong to tell my team that I didnt like the treatment they wanted me to be on because they were the drs after all!! It took for me to get really unwell to be able to tell the Drs why I ended up so unwell. They obviously asked me why I didnt tell them rather than just not taking the treatment, but I thought I didnt know as much and had to do as they said. From this point on I learnt that I could speak up for myself and say to the healthcare team that this was my views and opinions etc.

This is on the whole what those in the UK replied with when I asked about health advocacy.

In contrast others mainly (with some exceptions) from the US and Canada said that health advocacy was the sharing of ones own experiences and knowledge to help others and raise awareness for that condition. I think in the UK we would see this as raising health awareness.

Since attending HeV I have wanted to bring this contrasting view of advocacy to the UK and really advocate more for those with chronic health conditions and how you as someone with a chronic health condition can get the best information, and be able to live your life alongside your health condition and not put your life on hold because of it.

Getting over the stigma of wearing a mask in public!

It has been a busy few weeks with a number of trips down to London. Last year when I had a few trips to London there was a clear deterioration in my asthma when I was there. My peak flow dropped substantially and I was constantly feeling tight, wheezy and just couldn’t get my breath or settle my breathing. I took all the precautions I thought I could- such as increasing my treatment, pre medicating before going out and about in a bid to stop my airways getting more irritated. It was interesting to see the drop by almost 150 l/min in peak flow between arriving in London at night and the next morning it was down. It really did not take long at all. What did take a long time was getting my peak flow to come back up. It was not until I had been back home for about 5 or 6 days that my peak flow returned to normal. (The trip I am talking about to London was ironically a research meeting to discuss air pollution on lung health!)

Knowing I had and will have many more trips to London I knew I couldn’t expose my lungs to that level of irritation again and couldn’t afford to let my peak flow drop and need more medication to get back on track again. If I did not do anything then I would be on this rollercoaster every time I was in London or other heavily polluted cities and my lungs really don’t need it.

After some research I decided to purchase a Cambridge mask with a carbon filter in it to protect my lungs from the air pollution when in London or else where.

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I need to point out here that there is a lot of people out there wearing masks such as this or the vogmask which also has a filter in it but it is VERY important to realise that these masks will not protect you from bacteria or viruses. Often there are posts on social media of people wearing these masks in hospital to protect them due to suppressed immune system. They don’t work for that and the companies state that too. Only high grade surgical masks will protect from bacteria or viruses.

I was really apprehensive about wearing it and thought I would get funny looks, pointed at and comments made, but one fo the people I was with in London told me to put it on and my breathing was more important than what other people think. So I wore it and got on with it. I really was not sure how much it would help, if it would help at all or was it just a waste of money.

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Since purchasing the mask and wearing the mask when out and about in London I can say it has been worth spending the money. I was very skeptical and part of me still is as both London trips recently were very close together so I am not sure how much might be just that my asthma was not too bad. Once arriving in London the next morning my peak flow dropped by 50 l/min but it also stayed stable throughout my time there rather than moving around the place. I had some low grade breathlessness, coughing and chest tightness but nothing massively concerning that gave me too much cause for concern. Once back home my peak flow did pick up a little bit but I cant directly attribute the initial drop to London but I think what I can say is that wearing the mask with the filter did impact my lungs and kept my lungs stable. I have had 2 trips now with the mask and things have been more stable as a result.

I am still trying to understand just how much the pollution impacts my lungs but clearly it is as when wearing the mask there is a marked change from pre mask and a change for the better. Unfortunately I will not be able to avoid going to London as there are so many things down there with regards to research etc but using the cambridge mask has made a difference and has added a little bit more security for y lungs and reduce the risk of exacerbation as a result of pollution. I am not sure how much the pollution in Edinburgh effects my lungs but it might be something to consider and perhaps wearing a mask in Edinburgh night help too.

I cant reiterate enough though that these masks are not hospital grade and will not protect against all viruses and bacteria etc. It is a carbon filter. The website does say it filters bacteria etc but speaking with medical professionals and different lung charities they do not support their use for bacteria and viruses protection.

23 days on….. and its only got worse!

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Smokers need to imagine what it is like to fight for your life, to work so hard to get that tiny bit of breath in to supply oxygen to your brain and body. They need to experience this. They need to fast forward 10, 15, 20 years and try taking those precious breaths which they won’t be able to due to all the damage from smoking for many many years. They will soon have to fight for each breath. Only there fight will never get better. Their obstruction will not be reversible it will be permanent, there cough will not go away, the chronic chest infections won’t get better with antibiotics they will be stuck in a downward spiral as their airways get smaller and smaller due to inflammation and obstruction. They will rely on Drs and Nurses to fight to make them better. They will need the help of social services and be left gasping for breath just getting out of bed or standing up. This will all be due to the years of smoking cigarettes. The feeling they will feel are the feelings they make me feel every time I have to pass someone who is smoking. They don’t give a second  thought about it. They think I am over reacting about the effect the smoke has one me. They will comment about it being a free country and they can smoke when and where they want without thought of the damage it does to others. They will expect the health service to look after them and some of the people they have made ill will have to be looking after the people who smoked.

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The day that you fight for your breathe and fight for your life will be the day when you experience exactly what many asthmatics feel like when exposed to smoke.

Back on the first of April I questioned wether or not the NHS going smoke free was a big April Fool. Its the 23rd April and it appears that the NHS are not going smoke free even though they say they are. Rules are made to be broken but this new rule seems to be the easiest one to break of all.

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I and many of my asthmatic friends would be the first ones to stand up and rejoice that hospital sites are meant to be smoke free. It would mean so much more than not having to wonder how many times you will need to use your inhaler from taking your first step into hospital grounds to getting inside the door. It would mean no longer having to walk the long way round to find a door not many use to enter the hospital avoiding smokers hovering outside, it would mean being able to do your job or attend appointments without being worse than you were when you left your own house. The list is never ending for the benefits of not smoking.

There are no benefits to smoking what so ever but occasionally when I am very frustrated and having trouble to breathe, part of me wishes I had smoked. If I had smoked there would be a physical reason why my lungs don’t work as they should and why I need inhalers, nebulisers and tablets to keep my lungs working. This only comes into my mind when I am sitting awake in the small hours of the morning using my nebuliser wishing there was a cause for all this illness which just now I don’t have.

This is why I can not believe what I am about to say. Never in my wildest dreams would I ever dreamt that I would be in favour of revoking the rule and allow people to smoke on site again. I am stunned I would even consider thinking such a thing, but the reality is I would prefer it. I hate part of myself for this as I know what it feels like not to be able to breathe and I watch powerless as strangers choose to inflict damage and give themselves a future of pain and suffering.

Why do I want this?

Since the ban on smoking on hospital sites it feels like there has been an epidemic of people smoking on the hospital site and they are everywhere. Around every corner there will be someone puffing on a fag. It has made getting from the carpark to inside the building a logistical nightmare trying to find doorways which are not clouded in a plume of smoke.

At least before there were smoking shelters which were used pretty well and for those who did not use the smoking shelters there were the hot spots where you could find a group gathered. You knew the areas to avoid but now it feels like there is no where to hide from people smoking.

The biggest irritation is that no one is patrolling and enforcing the ban. No one is picking people up on smoking and god forbid you take it upon yourself to suggest people did not smoke the looks and comments you got were not worth it.

As a worker on an NHS site I despair on many occasions. There are rules for everything and it begs the question why are some enforced and some not. For example parking. You are quizzed about why you are trying to get into a carpark on arrival at the barrier and if it not for a reason that is approved by the car park people you don’t get in. As a community worker based in the hospital I have to take a lot of stock out to patients which can be very heavy. The solution is that it is dropped down stairs and I then bring the car round. The number of times a warden has come to tell me my bumper is over the yellow hashed lines or I am in the wrong place is astonishing. Half the time I spend arguing with them about being allowed to park to pick up stock I would have been away far quicker had they not caused an issue. I would have been creating less of an obstruction. My issue is that there are people enforcing rules which are doing no damage at all and not preventing someone getting treatment or anything being detrimental to someones health yet a ban is in place to stop people smoking on NHS sites and there is no one to enforce it.

It is disgusting that they can get away with this. I am sure if I went (wearing a mask and protection) and sprayed air freshener or a substance with an unpleasant smell all the smokers would be up in arms about someone spraying something yet they have no issue making others breathe their smoke in when it could damage their health.

I was so annoyed last nigh about it as I suffered a bit of an asthma attack- nothing major on my way home from work as I was rushing to get my haircut, I wrote to Asthma UK, Asthma UK Scotland, ASH and also my local MSP about how the smoking ban on NHS sites has almost caused a bigger problem than smoking was before. At least before you knew were people were and could avoid areas. It was not ideal but it worked. Now previous “safe spots” are a hazard making an already slightly problematic task nigh on impossible. I decided to take action and will await my responses. It may not come do anything but for myself I feel better for expressing how I feel and doing a small part to try and make life better for myself and others who suffer at the hands of those who are selfish and smoke.

I feel so passionately about this subject more so than any others because it effects my ability to carry out the care I need to give my patients to ensure they have the best quality of life they can possibly have.

My whinge is over sort of!! Had a pretty awful day at work and it has left me questioning why I bother killing myself to do  the best job I can. Pushing myself is making my life very restricted. I love my job and I love my job so much that I am prepared to sacrifice some of my free time to rest and recover from hard days at work. But today I really wondered why I bother. Many more days like that its not going to be worth it as I really can’t afford to sacrifice any more of my social time to allow myself to rest and get better and stronger for the next day ahead. I have a lovely weekend planned as it is my Stepmums 60th so we are all going out for a family and friends lunch on saturday and then I have golf on Sunday before more golf next weekend!