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Last Updated: Jun 23, 2019 - 1:03:27 PM |
The Bahamas Sickle Cell Association paid a courtesy call to Health Minister Dr Duane Sands and his leadership team on Monday, June 17, on the eve of World Sickle Cell Day observed on Wednesday, June 19. From left to right: Charlene Bain, Community Health Services Administrator; Dr Jillian Bartlett, Acting Medical Staff Coordinator; Marcel Johnson, Director of Nursing; Prenell King-Rolle, under secretary in the Ministry of Health; Dr Delon Brennen, Deputy Chief Medical Officer; Marco Rolle, permanent secretary in the Ministry of Health; Health Minister Dr Duane Sands; BSCA President Kayla Smith-Mortimer; BSCA Vice President Nadine Sawyer; Yale Rutherford, BSCA Assistant Secretary and Rioch Mitchell, BSCA board member. Photo by Andrew Mortimer
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They came with eight ambitious points to discuss. They left with their resolve strengthened to educate and raise awareness for their community.
The Bahamas Sickle Cell Association’s (BSCA) new board got through most of its line items during a 30-minute courtesy call rich in exchange with Dr Duane Sands and key members of his Health Ministry’s leadership team.
The government minister’s approach was candid. His advice to the association sound, drawing as he did on a decade worth of experience gained from running the Accident & Emergency Department of the Princess Margaret Hospital (PMH) and working at the health care facility for nearly a quarter of a century.
“We are certainly prepared to look outside the box and see what we can do differently,” said Dr Sands who spoke to the association’s four-strong team led by President Kayla Smith-Mortimer and Vice President Nadine Sawyer in an abbreviated lunchtime meeting Monday due to the parliamentary budget debate.
“We look forward to making some concrete steps, progress. I would like to ask you to temper the expectations of some of the patients. It isn’t going to be smooth sailing tomorrow but certainly we can work to eliminate some of the challenges that people have.”
Through managing the association’s expectations and offering a reasonable, measurable approach with merit, he drove progress towards what could eventually become an enduring policy providing missing guidelines to the public health system on how to manage patients who have inherited the red blood cell disorder known as Sickle Cell Anemia, Hemoglobin S or SS disease.
Chief among the association’s concern, according to Mrs Smith-Mortimer was a “treatment in 20-minute protocol” for sickle cell patients entering PMH’s Accident & Emergency Department and the establishment of a designated sickle cell clinic at the hospital, one open from 6am to 8pm for pain management and care.
While “in principle” Dr Sands supports the idea of timely intervention for every patient, he noted the inherent difficulty in segmenting the hospital’s patient population with regards to who should receive priority – aside from those suffering from gunshots wounds, heart attack patients and the like – and who should endure long waits to be seen.
Root of the problem
He lent support to the idea of identifying an area outside of A&E where the hospital could hopefully inch closer towards the 20-minute mark, not only for sickle cell patients but for others with long-term illnesses such as cancer and kidney patients.
The BSCA’s request was “not unreasonable,” the minister said, pointing to the hospital’s designated Asthma Bay, constituted to tackle the volume of patients coming in struggling to breathe.
He said, compounding the problem of chronically ill patients, like sicklers, is challenging vascular access, which slows down treatment when IV lines are necessary for the administration of fluids and medication.
Subtly shifting the discussion between the two sides away from the wait itself, to one of the reasons behind it, Dr Sands said locating a peripheral vein or gaining central access gets complicated for chronically ill patients due to the frequency of sticks. Veins get fragile or damaged even, from frequent IV placement.
“You don’t need just anybody, typically you need a surgeon to put the IV in, and not just any surgeon, somebody who is skilled in putting in those access,” said the cardiothoracic and vascular surgeon who was once the hospital’s go-to person when he practiced medicine.
Thus, to move emergency treatment for these type patients too far away from the realm of the hospital is not advisable, he said.
Not only do specialty skillsets fall off, but so too does the availability to pain medication such as morphine and fentanyl and the understanding of a chronic patients’ tolerance to those narcotics, making higher dosage necessary for a patient’s relief.
Reaching common ground
The BSCA said their members are often overlooked, treated like attention seekers at best and drug addicts at worse because of the type and amount of painkillers they require to numb the pain.
The minister said it’s a case of health care professionals proceeding cautiously less they wind up in front of a tribunal having to explain a patient’s death due to “inappropriate” drug dosage and a subsequent respiratory arrest.
“The first rule in medicine is do no harm. Doctors have to take their time. That is perceived as they don’t care,” said Dr Sands.
Herein lies a major disconnect between the sickle cell community and the health care professionals who treat them. Some education is necessary on both sides to arrive at what the health minister calls “reasonable expectations.”
Dr Sands suggested forums not only geared towards health care professionals but also the general public. It is a plan of action already on the drawing board, according to Vice President Sawyer.
“One of our mandates for this year is to partner with the ministry and schools to get the message out especially to our younger population to let them know what sickle cell is,” she confirmed.
“The conversation might have been vibrant many years ago, but a lot of people do not know whether they or their mate have the trait until they’re ready to have children and the next thing you know they have a child with sickle cell so education for us is a very important mandate.”
The way forward
The first order of business for the BSCA and the ministry is to constitute a working group comprised of their representatives, physicians, nurses and social workers to chart the way forward on improving access to treatment for those sicklers seeking care from A&E and determining whether an alternative site is feasible.
The goal, said the health minister, is to structure a working entity to move the conversation forward in a real way.
“This for me is real. This is no play-play issue,” said Dr Sands.
Several of his relatives are sicklers, including a late cousin who died at the age of 24, from a sickle cell crisis – the pain which could range from manageable to excruciating brought on when misshapen red blood cells become stuck in blood vessels, keeping blood from flowing as it should to all parts of the body. Over time it could result in organ damage.
The health minister expressed a willingness to collaborate with the BSCA on an “aggressive” public education campaign.
“I am happy that we are starting this dialogue. I believe there are some opportunities to make things better,” said Dr Sands.
“There are some things that realistically we just will not do right now just because we don’t have the capacity but certainly I think we can move this goal post down the field a little bit so that we capture more of the patients than we are able to capture now and perhaps identify ways that when people fall through the cracks that they can be salvaged sooner…Together we can look at some opportunities as to how we can structure a different approach.”
For sure, much remains to be done. However, Mrs Smith-Mortimer expressed confidence in the minister’s sincerity and assured him the association will do its part.
“We will do everything we can as a board, parents and warriors to make sure we educate every Bahamian. It’s a black/brown disease and this is our population,” said Mrs Smith-Mortimer.
“We want Bahamians to be prepared because when you are not, this disease could destroy families. For us, education must be on everyone’s tongue.”
© Copyright 2019 by thebahamasweekly.com
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