Patient Aims vs Clinician Aims when managing long term conditions

Clinicians showing vulnerability and learning from patients is so refreshing. This is my recent experience which I wanted to share as I hope it will allow patients to understand clinicians but also hope that any clinicians reading this will understand what is important to us as patients. My involvement in the Severe Heterogenous Asthma Research… Continue reading Patient Aims vs Clinician Aims when managing long term conditions

‘Forgetting difficult hospital admissions but then being haunted by memories and not being able to put them together and make sense of them all’

World Delirium Day- 17th March 2021 Delirium¬†is a serious disturbance in mental abilities that results in confused thinking and reduced awareness of the environment. Delirium is rarely spoken about. Many people can feel ashamed because of the delirium they experienced due to the memories they have. There is often the perception that if you are… Continue reading ‘Forgetting difficult hospital admissions but then being haunted by memories and not being able to put them together and make sense of them all’

PIP Change in Circumstances

PIP or Personal Independent Payments is the UK's disability payment scheme for those who's life is affected by their chronic condition. I wrote a few years ago about the different stages of the PIP application process which can be found here: Stage 1, Stage 2, and Stage 3. These posts were written back in 2017… Continue reading PIP Change in Circumstances

Drugs going out of stock in lockdown

aaaaaaaaaaahhhhh they are stopping making one of my drugs!!! A phone call from my pharmacist to tell me that they cannot get hold of one of my drugs is something no patient ever likes to hear let alone during lockdown and even less so when it is one of your allergy meds and you have… Continue reading Drugs going out of stock in lockdown

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… Continue reading You can disagree with your Dr, its called self advocating.

Is severe asthma different to asthma?

In my last blog post I mentioned how I met some other people with severe asthma at a BLF-AUK event where we had a conversation about asthma and severe asthma. It may have the same mechanisms in that it is a condition where the airways become inflamed and irritated causing difficulty breathing but here ends… Continue reading Is severe asthma different to asthma?

Getting medication on time.

I am not actually sure what title to give this post. I was recently in a consultation type meeting with a range of service users to discuss the nursing program at one of the universities in Edinburgh. They are being revalidated and want to make sure that the course is producing the best possible nurses… Continue reading Getting medication on time.

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… Continue reading World Asthma Day

Whats your reality??

The other day I picked up my medication from the pharmacy and laughed when the handed me over a shopping back but then went back for another one!!! I know all the people in my pharmacy well and will always have a chat with them but I have never really told them whats wrong with… Continue reading Whats your reality??

How do you get used to to living in a state of instability?

You don't.... I like my life to be quite ordered. I like to know what I'm doing day to day, week to week. Many think I am stuck in my ways but I like routine. Routine gets me through, it means I know where I am. Recently I have found my asthma has been not… Continue reading How do you get used to to living in a state of instability?