Hi, my name is Lowri. I live in North Wales. At 8 months old I was diagnosed with a congenital heart condition. I travel to Liverpool and London for my specialist care. I am passionate about patient advocacy and improving care for all.
Patient Life
There are many topics and issues I could discuss in this first blog post. I’ve chosen to talk about how to navigate life as a patient because you may be reading this as someone who has been newly diagnosed. And you may be feeling lonely and isolated by your diagnosis. Even though my diagnosis is congenital it took me a long time to find my tribe but I believe that it one of the most value bale things you can do as a patient with a complex health condition. You may not need it now but there will be a time where you have questions and peer support will become invaluable . Sometimes you will have specific questions and sometimes you will just need to rant. In my experience you will learn far more from your fellow patient than you will from a doctor (but remember, it cannot be a substitute for qualified medical advice). It’s something that you can dip in and out of.
Self-management
I took over my own care in approximately 2008. Up until that stage my mum was the person who took charge of my medication and appointments. My experience of self-management has taught me a lot and I’m still learning. If you’re going to research your condition please find reputable sources such as the NHS website , Mayoclinic or National Institute for Clinical Excellence. Google will just scare you stupid. Educate yourself about your condition because one day you will use this information to argue for better care.. You are not expected to read journal articles or research studies; but some people will choose to. If your condition is affected by lifestyle be pro-active.
Lowri's Top Tips
I’ve been attending clinics since I was 8 months old but I still get nervous. I have no idea why. Most of the time things are stable and clinic is just a check-up.
I opted in to receive copies of my outpatient letters over a decade ago.
In my experience to get the most out of my appointment I always prepare a set of questions. And yes after 30+ years I still have questions. Sometime it’s about new treatment or trying to understand elements of my condition. My paediatric cardiologist was used to this although I’m sure he thought it was annoying. My new cardiologist has quickly realised that I like to know the specifics. So much so that in her clinic letter she addresses me and explains things.
I also try and make notes during my appointment. Sometimes a few words or specific terminology is enough. Most of it will be written in the outpatient notes/letter. On one occasion I have even had a cardiologist draw a diagram on a napkin!
If you don’t understand something ask your consultant to explain it to you until you do. Doctors have a habit of using fancy terminology and acronyms. Get them to break it down. On a couple of occasions my suggestions have led to changes in my treatment.
If you are admitted to your local hospital as an emergency always ask them to speak to your specialist team. If they refuse then phone them yourself and make them communicate. I’ve learnt this from experience. I’ve been advised to travel to my nearest hospital in an emergency and they don’t have specialists in congenital heart defects. Treating congenital heart patients is not the same as treating patients with coronary heart disease. One trainee cardiologist told me that when he shadowed my paediatric congenital cardiologist he had to ‘chuck everything he had learnt about the heart out of the window’. Or words to that affect. Fortunately my cardiologist was a very experienced and knowledgeable clinician.
Be prepared to have repeated conversations and speak up for yourself.
I also take a small file with me containing copies of my outpatient notes and recent ECGs. This often helps when they can’t locate my paper notes as my local hospital doesn’t have electronic patient records. My file also acts as supplementary reading for clinicians.
It is important to remember that even if you have a similar diagnosis to someone else their patient experience will be different. For example, it may be that they don’t respond to the same medication. It does not mean that your situation /diagnosis is less valid. It’s just different. Don’t spend too much time comparing yourself.
You won’t always agree with clinicians and you are allowed to seek a second opinion if you want. It’s about working together to achieve the best outcome.
Never forget to advocate for yourself. I cannot emphasise this enough.
After all it is your body and you alone have to live it.
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