Just use appropriate pictures!!!

I really can’t believe its been a week since I got back to the UK and Healthevoices is over. I still can’t put into words how I feel about it. It was nothing I could ever imagine and really can’t put it in words. It was truly fantastic.

Before I settle to write about the HealtheVoices experience there is something that was posted recently which has really caused a lot of uproar.

Asthma hits the headlines for all the wrong reasons all the time. Normally it is the number of asthma deaths that are occurring hits the headlines which shockingly is at 3 every day in the UK and 11 in the US everyday. Way way to high for a condition that is fairly common but equally under funded.

One of the reasons given to the poor asthma death rate is poor asthma management and poor inhaler technique. There has been a massive push recently in primary care and secondary care to ensure that patients are taking their inhalers when they need to but not only when they need to we need to make sure they are being taken correctly. Unlike tablets which can only really betaken on way, or injections again which when subcutaneous you can’t go massively wrong however inhalers is a whole new board game. The sheer number of different types of inhalers then the need for multi tasking when taking them as you need to breath in, spray inhaler, then take it and hold your breath. There is not enough time given to assessing the type of inhaler which will be best for the patient and suit their needs. Especially the younger people and again older people due to dexterity issues. Even being young, fit and with it taking an inhaler correctly can be hard.

I like to think my inhaler technique is pretty good. I do and have been told on occasion that my technique specifically using my MDI (the traditional spray) inhaler is not quite right. I was even told at an asthma research meeting by one of the Dr’s there my technique was questionable but he said he let me away with it as I was about to go on stage to speak in front of about 150 people. But it shows that even those who can have good technique can slip when not concentrating 100% on what they are doing.

Asthma nurses, dr’s, patients and researchers on twitter were in uproar after the below photo was posted by the National Institute for Clinical Excellence (NICE).

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This picture is a complete 101 on how not to take your inhaler. Everything about it is wrong. Quite rightly everyone has been very annoyed by the main centre of excellence for health in the UK getting a photo so wrong. They have clearly not taken any time over selecting a picture or thought about the impression it is going to have on anyone that sees it.

This is not a new issue. Every week there are photos printed/posted relating to asthma which do not show good inhaler technique or even a technique which is relating to the current guidelines. It seems that everyone has their image bank and go to that, select a nice photo and that’s the one that is used.

I have and I am sure many others have come to the conclusion that the image banks have not been updated and are all out of date and not in keeping with current best practice.

As a result of this I have decided to try and make a change. I want to update these image banks and have a wide range of photos, some of older people using their inhaler, some younger people, a mix of devices as well but the key thing is to have the photos which display the current best practice.

I have been very fortunate to have so many people come forward to help with this so I am keen to get started. I have never done anything like this before but the hope is there will be more photos like the one below and zero photos appearing similar to the above.

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Having the support of your GP or Asthma Nurse

Having had asthma basically all my life one thing I have come to realise is the importance of your relationship with your GP or asthma nurse. For many they are the front line for you and your asthma care.

I am so fortunate to have a GP who is really understanding and although she finds my asthma baffling she will listen to me and help me when and where she can. Little things like making sure my medications are prescribed correctly, I get my flu jab etc. They also have various flags on their file on the system- this helps so much.

Many dread the phone call into the GP to try and get an appointment because their chest is not good but you have to get passed the gate keepers- the reception staff!!! Before the flags were on the system I used to have great difficulty trying to explain the importance of being seen promptly because my asthma goes off so quickly. It was a nightmare- I understand why they need to do it as appointments are short for the number of patients that need to be seen but when it is asthma it can be different.

After a bad experience not being able to get an appointment on the day because the reception staff thought it could wait, I ended up in hospital! During my follow up appointment with my GP which because I had been in hospital I was able to arrange via the reception staff, my GP was slightly irritated at me not being seen as it is important and could prevent hospital admissions.

Since that follow up appointment there is a flag which says if I am phoning in about my asthma I am to be seen by either my GP or one of the nurse practitioners who know my chest very well. There is also a flag that if I say I need antibiotics I can have a phone call rather than appointment and a final flag that if I feel I need to go to hospital they are to call the respiratory reg on call and arrange this.

Having these flags has made such a difference and offered a sense of security as I know if my asthma is bad then I will be dealt with urgently. Obviously if I call about something else I would need to wait just like everyone else.

I realise I am very fortunate to have all this set up. I wanted to highlight it so that others can ask their GP surgeries about this to help them manage their asthma better as it is a huge stressor when you asthma is bad and not able to get the help. Something so simple as a flag can make the world of difference.

When the drugs all get to much and mistakes happen.

This is what I started to struggle with. I found I was making errors taking my tablets. I would take extra of some and not enough of others or vice versa. This caused me to get very ill when I became toxic as I was out with the therapeutic level for one of my drugs.

Living with a chronic condition which is so unpredictable is so difficult. You never know whats going to happen when. You need to think about everything you do and the consequences of it. You day is often dictated for you and you need to fit your life in somewhere.

With chronic illness medication plays a massive part. As the condition develops you just end up on more and more medication. Often to counter act the side effects of medication rather then the condition itself.

Working as a nurse I deal with medication a lot. I know a fair bit about different drugs and what they do. I can sort out tablets and everything for my patients not a problem.

But when it comes to myself I have recently been finding it so hard. Wether it is because I don’t feel well and trying to concentrate while I make sure I have taken the correct thing at the correct time and not forgotten I have taken it and not take it at all or forget and take extra. I would spend a saturday mornings sitting trying to sort through my box of pills, inhalers, liquids and nebs and sort them into a box for 2 weeks. It is not a hard job to do but I just broken down. I couldn’t cope with my medications any more I didnt want to take them, I got confused with when I was taking what. I knew I couldn’t afford to not take medication and could afford to make errors.

Feeling almost ashamed I called my GP and spoke to her about my problem. She was super and arranged a dossette box for my pills which the pharmacist will make up each week for me. My pharmacist who I know well phoned to chat to me about it but was really busy and wanted to see if I could wait till february before he did it but he would give me a weeks medication in boxes instead. I almost broke down. I was on the edge of tears. I think because it was all becoming real that I have really been struggling to cope with how much I am having to take. I said it was fine and I would just go back to getting my scripts 2 monthly but that would mean phoning my GP up and getting another script sent out.

For me I think I had rationalised out in my head that by having my prescription done weekly and someone else was putting my pills in separate bits for me then I would not be as aware of how much medication I am actually taking. I can swallow about 15-18 pills at once with  no bother so in my head having them in all in a box with no input from myself then I just have to pop one pack and chuck them down compared with before having to pop what felt like hundreds of pills out their packets each morning (twice in the morning so I could put y lunch ones in a box for work) and night. By the pharmacist giving me a weeks supply in boxes I felt I was still bogged down by loads of medication and almost just need a break from it. A break which I can’t have as can’t go without taking it!

Having the box has made a big difference. I was getting so confused by what I was taking and how much I was taking and when. Even when I had a list I would get lost and forget what I have or have not taken. This was not so bad when I was feeling well but on days when I have had little sleep or am feeling pretty bad it was such a mammoth task. meds

This picture I posted to instagram shows what i used to have in the top two photos. I would need to use 2 7 day pill organisers to fit everything in for a week and had a huge box of all my meds. It would come in shopping bags. Thank goodness I don’t have to pay for those bags!!! But now the bottom 2 photos I get my inhalers in one bag and nebs in another and my pills in the dosette.

It has only been a week but so far I have already noticed a difference even if it is just to make life easier and psychological so I don’t think I am taking so much I don’t care. I helps.  It also means I don’t feel like I am living in a pharmacy. Other than nebs and inhalers lying around to reach when needed I don’t need to see piles of pill boxes anymore.

I am really thankful to my GP and pharmacist for sorting this out for me.