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Enhancing sickle cell community care across South East London
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Sickle cell disorder can be a very challenging condition to live with. In south east London, the team has been working hard to improve the care available for everyone with sickle cell. Our work is part of a wider initiative across the capital, the London Sickle Cell Improvement Programme.
We focussed the work on:
making changes to community care
making patient information accessible and digital on the Universal Care Plan
setting up sickle cell emergency bypass units.
Over the last year we set up the enhanced sickle cell community care pilot. The community-based service is designed to provide greater support for people of all ages with sickle cell disorder in south east London. This service has been rolled out across all six boroughs: Bexley, Bromley, Greenwich, Lambeth, Lewisham and Southwark. There are three community clinic locations across south east London.
How we listened to people with lived experience
The feedback collected via a patients survey and also the existing insights from people living with sickle cell guided our approach on enhancing community services. Thank you to those who completed our survey on previous experiences of sickle cell community services. The information you gave helped us to adapt and improve our service to suit your needs.
You said
We did
More nurses
There are more specialist community nurses available for both children and adults with sickle cell.
Wider support team (multi-disciplinary team)
People living with sickle cell have access to community-based specialists, including a dietitian, physiotherapist, and pharmacist all in one appointment. They will be working alongside community-based specialist psychologists, to help manage your condition. These appointments consist of the pharmacist, physiotherapist and dietitian working together with the person with sickle cell to look at their overall health and support them to make informed decisions about their care. The community psychology team have been running group sessions with more to come throughout the year, you can find the information on the right side of this page and sign up here.
Help with everyday life
The service offers welfare advice and support on benefits and legal matters.
Peer support
Young people with sickle cell, aged 10-24 can connect with others who understand what they are going through, through the Sickle Cell Society. Updates from March 2025 - 80 mentees in south east London have been referred onto the programme
We’re developing new resources to help patients, schools, workplaces, and healthcare professionals learn more about sickle cell disorder.
Some of the feedback from clinics
“I saw the dietician and met the team I had a great time. This is much needed. I feel it will really help generations to come and those who are older living with Sickle Cell.”
“The team were efficient, effective and very respectful of me during the appointment as I was really ill during my appointments. They made sure that I received an updated care plan and sent the medication I needed within a week. This has seriously improved my overall health and mental health. The follow up has been very helpful and I feel seen.”
We are in the process of collecting detailed feedback via surveys and evaluation matrix to capture insight form patients and carers using the new improved community services and the insights will guide our next steps and evaluate the impact of the services in people’s with sickle cell lived experience lives.
Sickle cell disorder can be a very challenging condition to live with. In south east London, the team has been working hard to improve the care available for everyone with sickle cell. Our work is part of a wider initiative across the capital, the London Sickle Cell Improvement Programme.
We focussed the work on:
making changes to community care
making patient information accessible and digital on the Universal Care Plan
setting up sickle cell emergency bypass units.
Over the last year we set up the enhanced sickle cell community care pilot. The community-based service is designed to provide greater support for people of all ages with sickle cell disorder in south east London. This service has been rolled out across all six boroughs: Bexley, Bromley, Greenwich, Lambeth, Lewisham and Southwark. There are three community clinic locations across south east London.
How we listened to people with lived experience
The feedback collected via a patients survey and also the existing insights from people living with sickle cell guided our approach on enhancing community services. Thank you to those who completed our survey on previous experiences of sickle cell community services. The information you gave helped us to adapt and improve our service to suit your needs.
You said
We did
More nurses
There are more specialist community nurses available for both children and adults with sickle cell.
Wider support team (multi-disciplinary team)
People living with sickle cell have access to community-based specialists, including a dietitian, physiotherapist, and pharmacist all in one appointment. They will be working alongside community-based specialist psychologists, to help manage your condition. These appointments consist of the pharmacist, physiotherapist and dietitian working together with the person with sickle cell to look at their overall health and support them to make informed decisions about their care. The community psychology team have been running group sessions with more to come throughout the year, you can find the information on the right side of this page and sign up here.
Help with everyday life
The service offers welfare advice and support on benefits and legal matters.
Peer support
Young people with sickle cell, aged 10-24 can connect with others who understand what they are going through, through the Sickle Cell Society. Updates from March 2025 - 80 mentees in south east London have been referred onto the programme
We’re developing new resources to help patients, schools, workplaces, and healthcare professionals learn more about sickle cell disorder.
Some of the feedback from clinics
“I saw the dietician and met the team I had a great time. This is much needed. I feel it will really help generations to come and those who are older living with Sickle Cell.”
“The team were efficient, effective and very respectful of me during the appointment as I was really ill during my appointments. They made sure that I received an updated care plan and sent the medication I needed within a week. This has seriously improved my overall health and mental health. The follow up has been very helpful and I feel seen.”
We are in the process of collecting detailed feedback via surveys and evaluation matrix to capture insight form patients and carers using the new improved community services and the insights will guide our next steps and evaluate the impact of the services in people’s with sickle cell lived experience lives.
We in south east London are committed to improving community care for people living with sickle cell disorder of all ages. Community services are healthcare and support services given outside of hospitals, often in local areas or homes, that help people with their health and well-being.
We would value your feedback from this survey to understand your previous experiences of sickle cell community care. All your feedback will be used to guide us in shaping and developing the best health services for sickle cell patients in our community.
We are keen to hear from people living with sickle cell of all ages, alongside parents or carers of people living with sickle cell disorder in south east London: Bexley, Bromley, Greenwich, Lambeth, Lewisham or Southwark.
This survey is anonymous. Please do not include any identifiable information (like your name, full address, date of birth, or hospital number) in your answers.
Thank you for taking the time to complete this survey. Your feedback is very important to us.
If you are interested in more opportunities to engage with us and want to join workshops to further help shape the services we offer, please email gst-tr.selsicklecommunity@nhs.net.
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Speak to your GP to be referred to your community nurse.
Multi-disciplinary team and welfare support
Ask your sickle cell care team to be referred to the MDT and/or welfare support.
Peer support
You can apply to be a mentee or mentor for the children and young person peer mentoring programme. Mentees: If you are eligible, you can self-refer or ask your parent/healthcare professional to refer you using the mentee application form on the Sickle Cell Society website. Mentors: If you are interested in becoming a mentor to young people with sickle cell, you can find out more and apply on the mentor page on the Sickle Cell Society website.
General enquiries: If you have any questions about the Sickle Cell Society peer mentoring programme, please email mentors@sicklecellsociety.org.
More nurses
Wider support team (multi-disciplinary team)
Help with everyday life
Peer support
Education and information
Community clinical nurse specialists
Peer support