A conversation about health and care services for people with sickle cell

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Summary of report content

Healthwatch Sandwell were commissioned by CQC to undertake a portrait of a seldom heard community to understand which health and care services they used and their experience of doing so and what changes they’d like to see. Healthwatch Sandwell engaged with people with sickle cell disease which predominantly affects people of African and African Caribbean ethnic origin. They spoke to 6 people via a focus group and individual interviews

Most people hadn’t heard of CQC and didn’t know what their role was.  They had used a range of services:

  • GPs
  • Ambulances
  • The Sickle Cell and Thalassaemia Centre at Birmingham City Hospital
  • Hospitals
  • Social services

Their main challenge in dealing with frontline health and care services was the lack of knowledge and understanding of sickle cell and its impact on people’s lives, including of sickle cell crises.  As a result, people didn’t get the care and treatment they needed for their condition.

The Sickle Cell and Thalassaemia Centre was only open during daytime, which made it difficult for people to seek help when they had a crisis at night.  There was no after care after a crisis other than friends and family.  Most didn’t receive any help from social services for care and support needs.

People wanted to see sufficient healthcare resources for people with sickle cell so that they could live their lives fully and independently.

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General details

Report title 
A conversation about health and care services for people with sickle cell
Local Healthwatch 
Healthwatch Sandwell
Date of publication 
Monday, 20 December, 2021
Key themes 
Communication between staff and patients
Health inequalities
Holistic support
Information providing
Integration of services
Quality of care
Service delivery organisation and staffing

Methodology and approach

Was the work undertaken at the request of another organisation? 
What type of organisation requested the work 
Primary research method used 
Focus group
Structured interview
If an Enter and View methodology was applied, was the visit announced or unannounced? 

Details of health and care services included in the report

Primary care services 
GP practice
Secondary care services 
Inpatient care
Social care services 
Adult social care
Urgent and emergency care services 
Ambulance services

Details about conditions and diseases

Conditions or diseases 
Blood and immune system conditions
Types of disabilities 
What type of pregnancy or maternity themes are included in the report 

Details of people who shared their views

Number of people who shared their views 
Age group 
18-24 years
25-64 years
65-85 years
85 +
Black/ African / Caribbean / Black British
Specific ethnicity if known 
Sexual orientation 
Not known
Does the information include public's views? 
Does the information include carer's, friend's or relative's views? 
Does the information include staff's views? 
What was the main sentiment of the people who shared their views? 

Outcomes and impact

Were recommendations made by local Healthwatch in the report? 
Does the information contain a response from a provider? 
Not applicable
Is there evidence of impact in the report? 
Is there evidence of impact external to the report? 
Not known
What type of impact was determined? 
Implied Impact

Network Impact
Relationships that exist locally, regionally, nationally have benefited from the work undertaken in the report
Implied Impact
Where it is implied that change may occur in the future as a result of Healthwatch work. This can be implied in a provider  response, press release or other source. Implied impact can become tangible impact once change has occurred.
Tangible Impact
There is evidence of change that can be directly attributed to Healthwatch work undertaken in the report.