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.

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