Helping to bring sickle cell disorder to the forefront of the health inequalities conversation through an end-to-end pathway review.
Objective
NHS England, led by the National Healthcare Inequalities Improvement Programme (HiiP), appointed us to urgently conduct a whole-scale pathway review into the claims made within the 'no one's listening' report published by the Sickle Cell Society.
Sickle cell disorder is a long-term condition that predominantly affects people from black African and black Caribbean heritage. This can cause many health problems, often leading to serious health issues.
The Sickle Cell Society published a report in November 2021 following an All-Party Parliamentary Group (APPG) inquiry. It detailed a disturbing lack in the quality of care experienced by many sickle cell patients, particularly in relation to A&E and ambulance care and called for major changes due to ‘serious care failings’.
Sickle cell disorder is a long-term condition that predominantly affects people from black African and black Caribbean heritage. This can cause many health problems, often leading to serious health issues.
The Sickle Cell Society published a report in November 2021 following an All-Party Parliamentary Group (APPG) inquiry. It detailed a disturbing lack in the quality of care experienced by many sickle cell patients, particularly in relation to A&E and ambulance care and called for major changes due to ‘serious care failings’.
What we did
The end-to-end pathway review was delivered between June and October 2022.
Using the clinical knowledge and transformation expertise of our blended team we rapidly mobilised the project conducting four separate workstreams:
Project stage 1 - we convened senior figures and experts in the NHS into four groups to discuss the challenge. Contributors included the National Director of Health Inequalities, the National Director of Urgent and Emergency Care, haematologists specialising in sickle cell disorder, and many others.
The current pathway of care was mapped out, the gaps and challenges were identified, and an optimal pathway of care was created, alongside a series of recommendations to take forward.
Project stage 2 - we set up a patient advisory group to provide ‘lived experience’ of sickle cell disorder. The content from stage 1 was tested with these patient advisory groups. The recommendations were ranked in terms of prioritisation.
Using the clinical knowledge and transformation expertise of our blended team we rapidly mobilised the project conducting four separate workstreams:
- Preconception, neonatal, antenatal, and maternity care
- Primary, community, personalised, palliative, and end of life care
- Urgent, emergency, and ambulance care
- Secondary and tertiary care
Project stage 1 - we convened senior figures and experts in the NHS into four groups to discuss the challenge. Contributors included the National Director of Health Inequalities, the National Director of Urgent and Emergency Care, haematologists specialising in sickle cell disorder, and many others.
The current pathway of care was mapped out, the gaps and challenges were identified, and an optimal pathway of care was created, alongside a series of recommendations to take forward.
Project stage 2 - we set up a patient advisory group to provide ‘lived experience’ of sickle cell disorder. The content from stage 1 was tested with these patient advisory groups. The recommendations were ranked in terms of prioritisation.
Activity
Health improvement and inequalities
Expertise brought in from this area to provide context in the report.
PMO implementation, operation and turnaround
Rapid mobilisation and coordination of PMOs for multiple workstreams.
System transformation
Clinically appropriate, evidence-based transformation strategies developed. Programme and project evaluation to identify the recommendations and the impact of their implementation.
Communications and engagement
Support for patient advisory groups and production of the report.
Outcome
Our final report detailed all the investigative work and our recommendations for sickle cell disorder care pathways.
The review succeeded in:
To find out more, please contact our Deputy Director of Transformation, This email address is being protected from spambots. You need JavaScript enabled to view it..
The review succeeded in:
- Prioritising sickle cell disorder on the agenda - sickle cell disorder was, for the first time, brought to the forefront of the conversation and the minds of senior stakeholders responsible for, and engaged in, large areas of sickle cell work
- Involving patients – the use of the patient advisory group meant that patients felt heard compared to past experiences and their views informed the project.
- Creating change – NHS England are in the process of implementing the recommendations and turning these into actions creating real changes to pathways for the benefit of patients as a result of listening to patient voices.
To find out more, please contact our Deputy Director of Transformation, This email address is being protected from spambots. You need JavaScript enabled to view it..
