173 ~ The lending hand ~

Patient safety is not a responsibility confined to the chronically ill. Healthy individuals also have a role to play towards the improvement of hospital protocols. Women go for birthing etc. The safety of newborn babies…

We all have a responsibility to contribute towards solutions for incompetence and negligence.

A responsibility that sits on each ones shoulders, in whichever sector you may be.

A responsibility to make the health care environment safer together.

A responsibility to prevent a future mishap you may have seen occur now.

Today’s silence, could be someone’s suffering tomorrow.

When it comes to the mishandling of patients, be it unintentional or not, silence isn’t golden. Silence is dangerous.

How should this responsibility be discharged?

Advocate Aaliya mentioned pertinent points, which I thought great to share:

“Today marks the first #worldpatientsafetyday. Having Ehlers Danlos Syndrome means there were multiple occasions where I’ve been at the mercy of people who were careless or negligent. Often times without meaning to be.

If you’re reading this and don’t have a disease, this still applies because nobody is invulnerable to illness, and all health care environments function better with safer protocols.

Let’s share our stories and learn how to fight together for a better and safer world on behalf of all who have to face the prospect of being ill at some points in their lives / their entire life.”

Emphasizing upon the above, we’ve structured a little list of guidelines to make you aware of the protocol.

Preventative measures are a primary rule. Let’s equip ourselves with the necessary tools.

General safety tips

Apart from hospital admissions, ensuring general safety wherever we are, is crucial. Especially if we’re prone to fainting, falling unconscious, seizures, etc…

⚕️ A medical identification bracelet with your information is important.

From https://ice-tags.co.za/

⚕️ A watch or aid button that can alert a family member or emergency response if you’re alone and something happens. My Lifeline service is brilliant or the famous Apple watch.


⚕️ If you’re a driver, the seat belt cover from RDSA is also handy. It can be used on a hospital sling bag or anywhere else deemed necessary.

📙 Please try to keep a little booklet on hand with a summarized history about your condition / risks if you’re going out somewhere.. Surgeries, complications, precautions, allergies, blood group etc

💳 These cards can be printed from the websites relating to your specific conditions

Advocate Aaliya:

🏥 I go to private hospitals and I have to ensure my laboratory tests are copied to all doctors and myself so nothing is missed.

Another point is: the nervous system in my left arm doesn’t work properly. I’ve learned to put a piece of tape on my arm and write on the tape that the arm is not to be used under any circumstances, since I am not always conscious. Its the best way of protecting myself!

In the hospital environment

1) Name tag upon admission

Is very important incase a scenario occurs where you’re unable to speak for yourself. If an IV or medication needs to be administered or monitored while you’re not aware or conscious, having no name tag could result in unnecessary / risky confusion.

2) Wear or request a mask

If your lungs or immunity is compromised and you’re susceptible to infection, please ask for a mask. You know your body better. Certain medical personnel can pose to be intimidating, but please dont be afraid to voice your needs. If not, you might end up suffering. Not them. (I state this from experience.)

Masks are of utmost importance to prevent any potentially further damaging or lethal infection.

3) Hand wash & sanitizers

The following safety measures are for medical personell. But important for us patients to remember as well.

⚠️ Not only in a hospital space, but for instance, if you’ve returned from public places like shopping or you’ve handled money, please remember to wash hands before eating or doing anything else.

4) Sterilized needles and equipment – Catheters / Tubes

There is a lot of neglect in terms of these 2 aspects. Some professionals insert catheters totally bare handed. It is utterly disgusting, not to consider a risk for both.

A member of our patient voices group related the following:

“Last year July, I got the Klebsiella pneumonia bacteria (CRP, CRE positive) in the ICU, as the nurses did not clean my catheter every day and it was the cause of my extended stay in isolation for 3 weeks in hospital.”

Another member states:

“My second cousin passed away after giving birth and apparently one of the reasons was the equipment used wasn’t sterilized properly…”

In terms of needles, a Dr told us of his colleague who was fired for continous needle reuse.

Some throw used needles on the floor instead of the bin. Also hazardous.

5) Surgery

6) A bell / signal arrangement

If you have a condition that requires a bell at your bedside, please make nurses aware of it. Especially if help is needed during the night.

7) Medication

Please ask! You have a right to know. Dont take things blindly. If a certain medication is not agreeing or making you feel worse, voice your concerns. If you’re confused, seek advice from others.

In Charlotte Maxeke, I was prescribed codeine without a specified reason. Upon inquiry from another medic, I was told the possible reasons and we both realised there was absolutely NO need for this medicine. So in a gentle manner I explained to the nurses why I will not be taking it, and they suggested I inform the Dr’s so they don’t get into trouble. In the end I won the matter lol 💪👇


8) Be involved. Take action. Become proactive. Don’t sit back and just “let things be” or slide by. Otherwise matters could become disastarous.

If you see any of the don’ts below occuring. Please report!

Although my grandad passed on when I was 8. As a little child, I clearly remember the manner in which he wrote letters to ministers, presidents, and took up positive action in not allowing wrong to continue. A great role model. Those scripts imprinted itself in my mind.

Some copies were found afterwards and we kept it as priceless souvenirs.

In time to come, god-willing I will share with you the conclusion of my experiences at Charlotte Maxeke. The manner in which my report was closed because junior “neurologists” in charge at that point, had no clue what they were doing. Abnormal autonomic function results were ticked off as normal. On oath, I’ve never seen such neurological illiteracy as I witnessed there.

Ultimately, it happened by the will of the Almighty only for my betterment. But that does not mean, if it suited me fine and I had other options to pursue, I should not direct the issue to the head of department and fight for the rights of those in lower financial positions.

Poverty, you see 💔

We will continue raising our words until action ensues.

In view of this, I urge you to please share other tips we might be unaware of or mistakenly omitted. Kindly forward any concerns, issues, experiences at any time, to myself

Khadeeja – kmjustwaxit@gmail.com


Aaliya – liya.e914@gmail.com

And collectively, the Rare Disease network will assist you in escalating and attending to the matter as far as we possibly can.

Like Aaliya says: “Lets use every opportunity to get our stories in the spotlight and work on fixing a system that doesn’t work for us most of the time”

Patient safety,

Is an inclusive responsibility

Patient safety,

Begins with me

Patient safety,

Begins with you

Let us

Engage for a Change

How blessed is the lending hand,

The feet which take a united stand

Undue credit goes to the @we_fight_dys team, for their selfless assistance with the entire inauguration and movement.

Please know;

You are valued volunteers

Much 💗💙💚💛🧡💖 and light ✨

Without burning yourself out completely in the process 👇

Remember boundaries discussed previously 😉

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