Ontario Health Launches the Quality Standard for Sickle Cell Disease!
On January 26, 2023, Ontario Health launched a new quality standard to improve care for people living with Sickle Cell Disease. The Quality Standard was developed by an advisory committee made up of patients, families, community members, health care providers, and health policymakers. The goal is to set the stage for high quality care for people of all ages living with Sickle Cell Disease in Ontario!
Anti-Black Racism is REAL!
Quality Statement 1 of the Standard addresses anti-Black racism - policies and practices that reinforce prejudice and discrimination towards Black people. It recognizes that:
Anti-Black racism is REAL
Anti-Black racism causes health gaps, especially for Black people with Sickle Cell Disease
Anti-Black Racism is a health crisis!
Ontario Health’s (2023) Sickle Cell Disease Quality Standard, page 13
Ontario is home to over 3,500 people living with Sickle Cell Disease, with most impacted people identifying as Black. The majority of people with Sickle Cell Disease live in areas around Toronto and Ottawa. Many patients face racism as a barrier to care. Despite its significance, Sickle Cell Disease is often seen as low priority, ignored by programs and invisible in health and social policies.
The University Health Network’s Anti-Racism & Anti-Black Racism Policy outlines its commitment to dismantling institutional racism.
High Quality Care for People with Sickle Cell Disease
The Sickle Cell Disease Quality Standard empowers health care workers and leaders to deliver high-quality care for people with Sickle Cell Disease.
Click to expand the eight quality statements that describe what people with Sickle Cell Disease as well as their families and caregivers can and should expect for high-quality care in Ontario.
Eight Quality Statements to Improve Care
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Your health care providers should always treat you with respect, dignity, and compassion.
You should be given the opportunity to be as healthy as possible. This means that you should be able to get high-quality health care when you need it, no matter where you seek care (for example, at your doctor’s office or at the hospital).
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You should be offered a complete health assessment at least once a year. This involves checking your physical health, your mental health, and your overall well-being.
Your health assessment should be done at a health care centre that specializes in treating people with sickle cell disease.
Your health care provider should use this health assessment to make a plan for your care. They should share this plan with all your other health care providers so that everyone has the information they need to give you the best care for your sickle cell disease.
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If you have to go to the emergency department or hospital for treatment for pain caused by sickle cell disease, a health care professional should see you and start treatment quickly:
• Within 30 minutes of being assessed by a nurse or
• Within 60 minutes of arriving at the hospital
Before you leave the hospital, a health care provider should work with you to make a plan to continue managing your pain at home. This plan is called a discharge information sheet.
Your health care provider should give you a copy of your discharge information sheet. They should provide it in a language you understand or offer translation or interpretation services if you need them.
Your health care provider should also give your discharge information sheet to a health care professional you see regularly for your sickle cell disease, like your family doctor, your nurse practitioner, or a doctor who specializes in treating people with sickle cell disease.
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Call 9-1-1 or go to your nearest hospital if you suddenly feel weak or if you have a fever, chest pain, a cough, trouble talking, or trouble breathing—even if you are not in pain.
At the hospital, a doctor should see you quickly to check if you might be having a serious complication of sickle cell disease.
Your doctor should talk with you about your treatment options and let you know the risks and benefits of each one. They should also ask if you have had any bad reactions to treatments or medications in the past.
Your doctor should work with you to choose your treatment.
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Chronic complications of sickle cell disease can have a serious effect on your health.
Your health care provider should tell you what to watch out for so you can get treatment quickly if you need it.
If you are experiencing a chronic complication, your health care provider should talk with health care professionals at a health centre that specializes in treating people with sickle cell disease to make sure you get the best treatment possible. They may also arrange for you to have an appointment at this centre.
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If chronic pain is having a negative effect on your life, your health care professional should arrange for you to have an appointment with a doctor or at a health centre that specializes in treating chronic pain caused by sickle cell disease.
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Living with sickle cell disease can be hard. So at least once a year, your health care provider should ask you about your mental health and your overall well-being. This includes asking if:
• You feel sad or worried a lot of the time
• You have trouble sleeping
• You feel lonely
• You are worried about school or work
Once your health care provider knows how you’re feeling, they can let you know about services and supports that might help you if you would like that.
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Your health care providers should involve you in choosing a single provider to be the designated health care provider for your transition from youth to adult health care services. This should be someone you know and trust.
This person should work with you to coordinate your move to adult services.
They should help arrange appointments and provide support until you feel your transition is complete.
We all have a Role …
Patients, families, community members, leaders, health care workers, social workers, and educators — in emergency, acute, outpatient, and community care settings — across education, employment, government, and non-profit sectors — we all have a role to play for delivering socially just care for people with Sickle Cell Disease!
Learn More
Quality Standard – Sickle Cell Disease: Care for People of all Ages: Read the Quality Standard in full to learn what quality care looks like, based on evidence and expert consensus
Patient Guide: Know what to ask for in your care
Ontario Health’s Equity, Inclusion, Diversity and Anti-Racism Framework: Read Ontario’s framework for addressing racism and discrimination and reducing inequities in the health system
Sickle Cell Disease Quality Standard Webinar: Watch the webinar introducing the Quality Standard. Scroll down to “Sickle Cell Disease.”
Helpful Resources
Quality Improvement Resources: Summary of all available resources for Quality Standard
Quality Standard Placemat: A quick-reference resource for clinicians that summarizes the Quality Standard and includes links to helpful resources and tools
Quality Standards Resource Library: Tools, resources, and educational opportunities for patients, families, community members, and healthcare workers to support implementation of the quality standard
UHN’s Anti-Racism & Anti-Black Racism Policy: Read the policy underlining UHN’s commitment to understanding the histories of systemic racism and discrimination that results in unequal access for Black, Indigenous, and racialized peoples. This policy supports the Sickle Cell Disease Quality Standard.
About the Authors
Sinthu Srikanthan (She/Her) is social worker in the Red Blood Cell Disorders Clinic at UHN. She is also a member of the Sickle Cell Disease Quality Standard Advisory Committee.
James Bradley (He/Him) is the Transition Navigator with the Hemoglobinopathy program working between the Hospital for Sick Children and Toronto General Hospital.
The Sickle Cell Disease Quality Standard Advisory Committee and the Ontario Health Sickle Cell Disease Quality Standard Project Team developed the Sickle Cell Disease Quality Standard.
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