Patient-Centered Care; The Sickle Life Experience.

In February 2018, Sickle Life was honoured to speak at the first Institute for Healthcare Improvement (IHI)   Africa Forum on Quality and Safety in Healthcare held from 19th to 21st February in Durban, South Africa.

The IHI Africa forum brought together health workers, improvement managers and policymakers from across Africa and beyond in multiple educative workshops on topics ranging from “Better Quality Through Better Measurement” to “Resilient Health Systems: Managing Health System Crisis”. It also included keynotes from Dr. Sodzi Sodzi-Tettey, Director Africa Region, IHI and Dr. Muhammad Pate, Former Minister of Health, Nigeria to mention a few.

Our session, chaired by Dr. Kendra Njoku titled “Is Patient-Centered Care and Patient Engagement an Essential Ingredient?” comprised health workers and patient advocates from Nigeria, Ethiopia and South Africa sharing their work experience and impact in HIV, maternal and child health and related projects.

Representing Sickle Life, I shared our experience with Sickle Cell Disease (SCD) advocacy in Ghana and why Sickle Life adopts a patient-centred model.

 

BACKGROUND

The Institute of Medicine’s definition of healthcare quality is the degree to which healthcare services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge. Patient-Centered Care is also defined as providing care that is respectful of and responsive to individual patient preferences, needs and values and ensuring the patients’ values guide all clinical decisions.

Picker’s Eight principles for patient-centered care are respect for patients preferences, coordinated and integrated care, information and education, physical comfort, emotional support, the involvement of family and friends, continuity and transition, access to care.

 

 

THE PRESENTATION

 

 

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Click here to see more pictures in our Photo Gallery 

This is me.

 

The picture on the right was taken on the night before one of my papers during medical school finals.

This is also me (engaged in health advocacy).

Still me (doing clinical work).

I have been a medical doctor for a little under two years, a health advocate for five years and a person living with Sickle Cell Disease (SCD) for 27 years.

In essence, my credentials should read BSc. MBChB. CEO and then SC for my genotype.

Being on both sides of the stethoscope, I am convinced that patient-centred care is essential in ensuring quality health care.

The principles that underpin patient-centred care are closely related to ethical principles of autonomy, beneficence, non-maleficence and justice that we as health workers are guided by in our interactions with patients.

Sickle Life is a health advocacy group I started in 2015.

Five years ago, while in Medical School I was diagnosed with a complication of Sickle Cell Disease, Avascular Necrosis of Head of Femur, and it was bilateral. This diagnosis was a catastrophic diagnosis as I was a fairly stable patient going about my life, jogging occasionally, playing basketball and such. Nothing major. And then suddenly I had to pace myself while walking, undergo physiotherapy and alter my lifestyle.

I set out on a mission to educate the public, give insight into the realities of living with a chronic medical condition and hopefully empower them to make informed decisions about the condition all the while living each day to the fullest and making it count.

A mission to educate the public, give insight into the realities of living with a chronic medical condition and hopefully empower them to make informed decisions about the condition all the while living each day to the fullest and making it count.

This is our logo. It’s a burgundy ribbon which is the universal symbol for Sickle Cell Awareness. It is also a stethoscope which emphasises the importance of clinical management for people living with chronic medical conditions, the interplay between advocacy and clinical management.

Our work focuses on health education.

As Kendra mentioned, a key component of patient-centered care is patient education.

A key component of patient-centered care is patient education.

As key stakeholders, patients need to be well informed about their condition and care.

We provide information through publications in magazines and brochures such as the Ghana Medical Association Magazine, KNUST Medical School magazine, brochures and our website, as well as social media.

Additionally, we have produced documentaries, and we interact with the media frequently to bridge the information gap.

Rural medical outreaches provide access to information and care to beneficiaries and their families, another essential component of patient-centered care.

Primarily based in resource-deprived settings, with a double burden of communicable and non-communicable diseases, primary prevention through free Sickle Cell testing and counselling is an essential component of our work.

Here, you see the team interacting with the chief and people of a rural community in Ghana, West Africa where we served 300 inhabitants. In another instance, 100 people benefited from free screening while 50 units of blood were voluntarily donated to support the management of Sickle Cell patients at the Korle-Bu Teaching Hospital.

Quality healthcare occurs at all levels of healthcare, and it’s essential that we listen to the patient in policymaking. Kendra has mentioned that it should not just be reduced to tokenism. I couldn’t agree more. We need to ensure the patients’ voice is heard not only in the consulting room but in the boardroom and at the ministerial level where key policy decisions are made.

Here you see Sickle Life at the launch of the Ghana Quality Healthcare Strategy with the ministry of health of health Ghana, IHI, Ubora, USAID.

You also see us representing patients at the launch of the Ghana Standard Treatment Guidelines document which directs patients care and management in primary healthcare in Ghana.

The Sickle Life Adolescents Mentorship project is an essential component of our work that seeks to bring adolescents living with Sickle Cell Disease in contact with adults living with the condition for mentorship because in out setting there is a popular myth that people living with SCD die before 18 years.

We, therefore, created this platform to encourage interactions between young patients, their families and adults living with the condition.

The outline of the programme involves Mentorship at the paediatric Sickle Cell Clinic, discussing topics such as medication compliance, drug abuse, career options etc., after which they were taken on a bus to a playground for informal fun sessions.

The Mentorship project is essential because both patients and their families receive information which is a crucial component of patient-centered care. There’s also the provision of physical and emotional care. Continued provision of this care is provided through this project as there is an interplay between paediatric and adult haematologists.

These are some comments from beneficiaries of the Mentorship project:

“We had an extremely useful day. We learnt a lot and are very indebted to all the members who discussed our future with Sickle Cell with us.”- Mentee

“ Some of us had not got such opportunities to go out with our children to have fun. Our kids are thankful for providing the facilities we enjoyed, especially the canopy walk.”- Parent

“I enjoyed speaking to the kids but I enjoyed watching the kids playing more. As a kid who did not play much due to overprotective parents, seeing the kids play and interact with mentors made me excited about their sense of independence.” -Mentor

I identify with these comments because;

As a person living with Sickle Cell Disease, I faced restrictions too. These restrictions were because everybody thinks you will break (essentially) if you engage in any sort of physical activity. It is therefore important to give these kids an opportunity to engage in safe physical activities and learn about what is possible despite the challenges of Sickle Cell Disease.

 

The Sickle Life patient support group brings together people who have an interest in Sickle Cell Disease; patients, parents, carriers, health workers etc. to interact and provide social support. It is encouraging to watch patients engage each other and provide emotional support when needed. It also provides financial assistance when required.

Of course, there have been challenges, as with any such endeavour.

Our primary challenge is financial. Being a young organisation, we do not have any major funding; however, this does not limit us. We achieve our aims by being innovative. With as little as 5 to 100 dollar donations from volunteers and well-wishers, we organise the Mentorship Project. With grant funding though, we could greatly expand our scope.

There is also a lot of mistrust, and lack of collaboration amongst health advocacy groups focused on similar projects such as Hypertension, HIV, Diabetes, Sickle Cell etc. I implore you to collaborate for a more significant impact.

Further, as a voluntary organization, we are constrained in our ability to undertake all our projects on a regular schedule but are hoping to recruit permanent staff to address this challenge.

A final challenge is the personal sacrifices we need to make to achieve our goals. As a team of millennials going to rural settings to serve deprives volunteers of certain luxuries such as internet access is quite challenging. As you can see in this picture, somebody is in search of network access there. I do not know what you may have to sacrifice to achieve your goals, but whatever it is, please do so wholeheartedly. It is rewarding to see the benefits in the lives of your patients.

In conclusion

Without a doubt, the best way to ensure quality healthcare is to put the patient at the centre of care.

As medical professionals, we need to adhere strictly to quality healthcare principles and ensure other team members do the same.

We have the public’s ear. They want to listen. More of us ought to take up advocacy to ensure we achieve quality healthcare.

We should all be advocates.

Dr. Sefakor Enam Bankas.

(The writer is a person living with Sickle Cell Disease and a Sickle Cell Disease Advocate. All views expressed are personal, please contact your doctor/counsellor for further information.)

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