Why it’s important to celebrate good care when we receive it
A columnist with sickle cell disease shares some recent positive care experiences
I’ve previously written about the difficulties I’ve sometimes faced when trying to get my prescriptions filled to treat sickle cell disease. In a stroke of luck about a year ago, I found a pharmacy that is much better suited for my needs.
The staff at this particular pharmacy is proactive in ensuring they have the medications I’ve had difficulty accessing in the past. They make sure to have enough of it in stock to meet the frequency of my repeat prescriptions. While it’s not close to my home and requires a bit more effort on my part to travel there, the most important thing is that I have my medications without having to constantly fight to get them month after month.
Having effective pharmaceutical infrastructure is imperative for all patients, but especially for those of us with long-term illnesses. Here in the U.K., repeat prescriptions are written by a local general practitioner and then dispensed by a local pharmacist. For repeat prescriptions, you must be registered with a particular pharmacy; you can’t just go to a random one. Therefore, having a good relationship with your registered pharmacy is important.
We have a universal healthcare system here, so while you can be charged for medications, it’s usually a minimal, flat fee. Some medicines are very expensive and aren’t provided outside a hospital, but that is rare.
At my new pharmacy, not only did I notice an improvement in access to my medications, but also a more positive environment. I have a good relationship with the staff there, who seem genuinely interested in providing me with good customer service and ensuring that my needs are met. This new reality has been transformative for me, and I feel like a huge weight has been lifted off my shoulders.
Kudos to the ER doctor, too
Two weeks ago, I suffered a sickle cell crisis at home. The pain started in my chest. Sadly, it took about two hours for the ambulance to arrive, and by then the pain had spread from my chest to my limbs and hips. Once the ambulance crew arrived, though, they moved quickly, administering pain relief almost immediately.
In the emergency room, the doctor on call was amazing. If you’ve read my column before, you’ll know I don’t use that term lightly. It was my first interaction with this particular doctor, and as soon as I arrived, she was proactive about implementing my care plan in a timely manner. It was busy in the ER, but she made sure I was treated appropriately and was a bit more comfortable.
I was then moved to a different part of the ER led by nurses. Unfortunately, the care there wasn’t too great, so my husband returned to the previous section to speak with the doctor. She came to our section and advised the nurses about what I required. She discussed my care plan with them and mentioned that even though it sounded like a lot in terms of medication dosage, it was what was needed to help me get better. She discussed the importance of dispensing my IV treatment and other medications in a timely and consistent manner, and she went out of her way to ensure that I was well cared for as a patient. I’m extremely grateful for that.
I plan to write the hospital’s leadership team to let them know how excellent the care I received was. I think it’s vital to do this, both to praise the doctor for a job well done, but also so that the leadership team can educate the rest of the staff about what high-quality care looks like.
For sickle cell patients, poor quality care happens often, so it’s important to celebrate when things go well.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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