19 November 2012

Healthcare activism - negotiation of care plans, holistic approaches and blogging as therapy.

Being in hospital, and even living with a chronic illness on a daily basis, can be quite disempowering. There is little privacy, schedules for treatment, tablets and observations, TV rental is ridiculously expensive, and you can't do the things that you're used to, like get up out of the house and visit a friend.

This hospital stay, I am quite low care. The nurses come to do observations, give me tablets every few hours and change my bedding twice a day, but I shower myself, apply my creams and move around as freely as I am able to - venturing to the shop for a newspaper or a snack, and heating my food up in the microwave. I am using social media to stay abreast of news and to chat to friends. It's been the source of a virtual hug.

Last night I took part in a Twitter chat for healthcare and social media enthusiasts - known as Health Care and Social Media Australia and New Zealand (HCSMANZ). It happens each Sunday night at 9.00 pm Australian EDST, and you can follow along using the hashtag #hcsmanz (and you don't even need to sign up to Twitter to follow the chat). I like this chat because it's fast, interesting and relevant, and I can 'meet' like minded people (including doctors, patients, medical students and marketers) from across the world. View last night's transcript here.

One of the first questions put out by the chat moderator was "what is healthcare activism?". While it is a number of things - protesting, creating changes, health professional advocacy and so on, I jumped in from a current patient perspective.

I said "I am in hospital now. Healthcare activism is being able to negotiate my treatment, telling my medical staff what I need. I know my skin."

From my arrival at hospital, the dermatologists have encouraged me to lead the way for my treatment. Up front I said no blood tests or canulas, unless infection worsens. This means infection will not spread to my arms or hands (where the needle wound site is). The nurses on this ward are used to doing wet dressings for skin conditions, but they haven't done them the way I have been used to. And so when the dressings and topical creams did not reduce the swelling, inflammation and pain, and the wetness of them didn't allow me to sleep comfortably, I suggested we change how things are done - no dressings but a stronger topical cream. And lots of bed rest. This has meant that I can lie here comfortably and dry, knowing that the stronger creams are doing their job. And my legs are far less swollen, hot and inflamed. It felt good to negotiate, and be listened to. This collaborative approach between patient and doctor enables empowerment of the patient.

Secondly, I believe health activism is a holistic approach. My dermatologist said that my healing is as much about rest and good food as the medication and topical treatment. The feeling of not having to do anything but lie in bed and read, sleep, eat, shower and repeat has made my body so much calmer. If I was at home, I'd be having the tablets and applying the creams, but I'd also be doing the cooking (or calling for takeaway), cleaning up after myself, and finding things to do. Yes it's boring in here, and I have not read or written as much as I had hoped to, but it's restful. Which is what I need.

And finally, my other contribution to the "what is healthcare activism?" question was this:

"Healthcare activism has also been being able to swap a chat with a psychologist with blogging as therapy, and my doctor seeing the value".

Writing this blog, even really short entries on my phone, has meant I can clarify my thoughts, write out my pain and frustrations, and receive support from readers, Twitter friends and real life friends. It's certainly a worthwhile past time. Once I've written and published it, I can let those feelings go.

In my thesis (on blogging and chronic illness), I wrote:

"...I can relate to Tan (2008) and McKosker (2008) in using blogs as self therapy. While I have not sought out medical treatment through my blog, I have expressed frustration, described pain and recalled socially challenging experiences. As mentioned, illness can be lonely, and putting my thoughts out there for the world to read is a way of letting go of them."

It is valuable that illness and healthcare is not just confined within a hospital or traditional medical setting. While I don't use the Internet or my blog to get (or provide) medical advice, I do use it for friendship and emotional support (and am well aware where I should seek medical and psychological support).

I also wrote:

"Parr (2002, p 77) also outlines the trend that “health and illness are now not confined to the clinical locations of the hospital or the GP surgery, or to the relationships between doctors and patients, but are dispersed throughout various social and commercial arenas” (Nettleton and Bunton, 1995 in Parr, H 2002)."

This new trend, acknowledged by academics and medical staff, means that patients' voices are heard and valued. I am so grateful that my dermatology team does listen to and value my voice, so I can help shape the treatment that works best for me. I feel like I am a patient, speaker, advocate and activist.

How are you a healthcare activist?



  1. Thanks for writing this piece Carly. You have a great dermatology team looking after you - they a set a good example of how other health professionals should look after their own patients.

  2. yep. I think the attitude of the people around makes a big difference too. For the lonely times, you then have the blog and its supporters too. Sufferers, I am assuming, may be awake at strange times in Melbourne... but not so strange in other corners of the world.

  3. Have just read back over your posts Carly, so sorry to hear you're in hospital but am pleased you're resting and getting well looked after. I loved reading this post. In my experience, our health professionals are very keen to take the lead from us as parents of our girls and I'm so grateful that we live in this age and a country where this is becoming more and more the norm. Thank goodness your team is the same. Please God can you be out of there for Bob Evans on Friday! Keep well xx

  4. When I was a small child I nearly died of complications from appendicitis. What started as a relatively common illness became life threatening due to negligent behavior on the part of a number of health professionals. My parents started out compliant and ended up with my Dad standing in the middle of the hospital yelling at people until a specialist was brought (who was horrified at my state and ordered the life saving antibiotics and new non-faulty drip).

    From that experience my parents learned and then taught us that you have to be a major participant in your health treatment. Educate yourself so you can have educated conversations. If you don't like something, find alternatives. Work with the health care professionals, don't just let stuff happen to you.

    Much as I would have preferred not to have had it happen to me as it has had long lasting heath effects, it has made me pro-active about my health and for that I'm very grateful.

  5. Having that sort of empowerment and being listened to and having your words respected is so important in a hospital. It is easy to feel like a small cog in a large wheel. It sounds like you have a great team there looking after you. I hope that you are feeling better soon.

  6. Well done for standing up for yourself and your health. Glad that you have a good team on board. Sorry to hear that you are in hospital though. Hope your skin continues to heal.


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