Enhancing sickle cell community care across South East London
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 |
|
 Wider support team (multi-disciplinary team) |
|
 Help with everyday life |
|
 Peer support |
|
 Education and information |
|
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.”
Read more about team community engagement approach and progress by clicking the link here.
What happens next?
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.
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“Every moment was memorable” – South east London sickle cell community picnic
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On Saturday 2 August, the sickle cell community service hosted a community picnic at Crystal Palace Park, and what a day it was!
The day was full of games, laughter, and fantastic food, bringing together families, young people, clinicians, mentors, and supporters to celebrate the strength and unity of the sickle cell community in south east London.
Planned together with patients, the picnic provided a welcoming space for participants to connect, share experiences and enjoy time with others. One attendee described it as “enjoyable social networking away from the clinical environment”, while another reflected it “boosted my mood”.
The day was also a great opportunity to raise awareness and share information about sickle cell, helping people to feel more informed and supported.
The event left a lasting impression, with attendees nothing that it and highlighting their favourite moments as “seeing everyone happy”, and the “great, positive vibe”.
This idea for the event and the planning of it were informed by people with lived experience voice and was a partnership between the NHS South East London, the Sickle Cell Society, South London Office of Specialised Services and the South East London Haemoglobinopathy Coordinating Centre.
South east London sickle cell community picnic
How can I access sickle cell community service?
 Community clinical nurse specialists | 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. |