What are the barriers preventing adult sickle cell patients from “ageing well” from the patients perspective?
From the outset of this project we have been asking patients what matters most to them with regards to ageing whilst living with the sickle condition?
Between September 2025 and March 2026, we ran a series of focus groups, inviting feedback from adult sickle cell patients on a range of themes identified at the project launch as priority such as Care with compassion, Education (Being Informed), Financial Stability, Mental Wellbeing, Navigating Employment, and Diet and Nutrition.
We received over 200 responses and have summarised them into the below themes.
We’re excited to share how these themes have been used to identify the barriers currently acting as roadblocks in an adult sickle cell patients journey to improved health and how they have shaped our final report.
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Barriers Identified
Lack of compassionate care
Lack of public awareness of sickle cell
Lack of financial stability
Lack of mental health support
Lack of accessible information about the condition
Lack of access to tailored wellbeing programmes
What patients asked for
Psychology built into the standard care package rather than reached through crisis or a three year wait.
A welfare adviser — restoring a post the service previously had.
Mental health workers based in general practice, serving the whole community.
An approved list of vetted private and low-cost therapists for those who go outside the NHS.
Social prescribing, placed within the hospital.
Advocacy support for patients who cannot advocate for themselves.
Hydrotherapy and physiotherapy available on clinical need rather than chronological age.
Peer support convened where patients are already gathered — starting with the sickle cell
pregnancy clinic.
Information about what benefits exists: hospital transport, prescription charges, hydrotherapy,
benefits.
Education for employers, and support with occupational health and the benefits system.
Correspondence confirming a newborn's sickle cell result including babies with the trait..
We are asking commissioners to use the report to commission community provision for sickle patients currently not available for the younger, yet frail cohort.
Our other recommendations are made from the of patient request include:
A welfare adviser — restoring a post the service previously had.
Click here to view the official Ageing Well with Sickle Cell report
