World MS Day: The power of advocacy
To mark World MS Day, long-time talkhealth member and MS warrior Clare McKenzie shares her thoughts on advocacy, community and finding your voice...
There doesn't seem to be a day, week or month that goes by when someone, somewhere isn’t raising awareness of a chronic illness. After all, there are certainly lots to choose from!
In reality, as any chronic warrior will tell you, every day is an awareness day! Those living with a condition, their families and friends learn to expect the unexpected, champion our good days and push through the bad ones the best we can.
That’s why, on World MS Day, I like to think about the wider health community that I am part of. Fittingly, the theme for World MS Day on 30th May 2021 is ‘connections’. The campaign is all about building community connection, self-connection, and connections to quality care. Following the ethos of: ‘I Connect, We Connect’, MS Connections challenges the social barriers that leave people affected by MS feeling lonely and socially isolated.
This year's theme got me thinking about how important connections are, particularly between patients and healthcare professionals. I took a deep dive into the power of patient advocacy and what it means for me…
In layman’s terms, advocacy means getting support from another person to help you express your views and wishes and stand up for your rights. Someone who helps you in this way is called your advocate.
How do these people do their job in the healthcare scene? Good question!
Typically, a health advocate is an individual who provides direct and personalized services to a patient and/or their family as they navigate these unexpected twists and turns of the healthcare system.
To be clear, if you appoint a healthcare advocate, they will not voice their personal opinions, solve your problems or make any judgements about you or your situation. They are simply there to help you express your views in meetings in healthcare settings. The key principles of advocacy are clarity of purpose, safeguarding, confidentiality, equality, diversity, empowerment, and above all, putting patients first.
This World MS Day, the MS community are organising an hour of live music!
Find out more about how you can Tune in For MS here!
As an MSer, I have frequently become frustrated with the system. When I was first diagnosed with MS, I could not understand why there were so many disparities between Healthcare Trusts. It certainly wasn't a 'one size fits all' approach as NICE (National Institute for Healthcare Excellence) would have you believe!
Since my diagnosis, although I have sometimes thought about getting an advocate, I have always chosen to advocate for myself. It works for me because I am always raising my voice to recommend or support a cause, a policy, or an issue that I have strong opinions on; I’m no shrinking violet!
I have taken my advocacy further by engaging in activities, on and offline, that are designed to promote good MS health and wellness. I do this in the hope that both newly diagnosed and those living with the condition (and me!) are steered in the right directions. I also provide feedback to my local MS nurse, in the hope that this will better future care opportunities for my fellow MSers.
Whether you choose to outsource advocacy or feel comfortable letting your inner advocate shout, better care comes from being heard by the right people at the right time. The #MSConnections campaign is spotlighting the power of an empowered MS community that has found its voice!
Whatever way you choose to advocate, speak up and be heard. You matter!
Clare McKenzie
talkhealth+ Member
IG: @ms_jellylegs
Earlier this year, talkhealth put together a list of patient advocacy resources, you can find it here!
If you’re living with MS or caring for someone who has the condition, be sure to check out our free myMS support programme and other resources on the talkMS hub.
Information contained in this Articles page has been written by talkhealth based on available medical evidence. The content however should never be considered a substitute for medical advice. You should always seek medical advice before changing your treatment routine. talkhealth does not endorse any specific products, brands or treatments.
Information written by the talkhealth team
Last revised: 30 May 2021
Next review: 30 May 2024
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