New services in North Central London were launched in June 2024 to improve the provision of health and care for red cell patients (including sickle cell, thalassaemia, and rare inherited anaemias).
These new services, along with staff training, aim to improve the care and experience of all people living with inherited red cell disorders. You can find out more about these services and more by visiting the Red Cell Network.
The new services and staff training includes:
Community Red Cell Service
This new specialist nursing care will support red cell patients in their own homes with close links to primary, specialist, social and community care to join up services and create a seamless experience for patients.
This service is a source of support, clinical care, advice, and advocacy for people with red cell disorders and their families. Our community service focuses on the individual and what they need at that point in time. It also recognises that these needs can change and be unpredictable. We will address the physical, emotional, and social needs of patients and families affected by red cell disorders.
This service does not replace the role of your hospital team, but works closely alongside them to provide broader, more joined-up support.
Patients can refer themselves to this service by filling out this form and emailing it to ncl.redcellteam@nhs.net. You can also call 020 3316 8853, or be referred by your GP, haematologist, or any other member of your healthcare team. Care and advice can be provided over the phone or in person at your home, the George Marsh Centre or the Camden and Islington Sickle Cell and Thalassaemia Centre.
Service hours are Monday to Friday 9:00am – 5:00pm
Hyperacute Service
Based on feedback from patients, we have created a new expert ‘hyperacute’ service to provide specialist treatment when people need it most, allowing them to bypass A&E in a crisis.
Located at North Middlesex University Hospital, closest to where the majority of people with sickle cell disorder in North Central London live, the service builds on the Trust’s existing specialist red cell service as well as specialist services at the Whittington Hospital and University College London and the haematology team at the Royal Free Hospital.
Contact details:
- sickleandthalspecialistnurses@nhs.net
- 07773735842 (monitored 24 hours a day)
The Red Cell Network Sickle Cell training program
We have created the first training in sickle cell management accredited by the Royal College of Nursing. It is free and available to all.
The training information contains 7 videos and quizzes which will tackle the lack of awareness of SCD in staff supporting sickle cell patients in community and hospital settings.
More information can be found here: https://www.uclh.nhs.uk/theredcellnetwork/education/sickle-cell-disease-bite-size-sessions
There are also great resources for patients in the Patient Hub: https://www.uclh.nhs.uk/theredcellnetwork/patients
ACT NOW Training
NHS England are piloting an A&E and first responder acronym along with training to tackle avoidable deaths and failures of care for sickle cell patients. The acronym “ACT NOW” has been developed collaboratively with clinical experts and patients. It supports a rapid and effective response to a sickle cell crisis.
NHS England will be announcing more content on this work in the coming months, therefore we will wait to share more information on this externally until then. However, we are encouraging partners to share content around ACT NOW through internal channels only.
More information can be found here: https://www.england.nhs.uk/london/a-c-t-n-o-w-sickle-cell-acronym-pilot/
Additional resources are also available from the Sickle Cell Society to support the implementation of the acronym and share how it will benefit patients in sickle cell crisis.
Universal Care Plans
The Universal Care Plan (UCP) is a digital patient care record. It is being expanded to meet the needs of red cell patients across all settings of care. This means that NHS staff will be able to access patient’s care plans online and provide a better quality of care more quickly.
Patients should speak to their red cell care team to find out more.
Patients are experts in their own conditions, and plans should be co-produced with their healthcare teams.
Sickle Cell Society Mentoring Scheme
The Sickle Cell Society has launched a mentoring scheme for children and young people between the ages of 10 and 24 in London. The mentoring scheme allows children and young people to meet with a ‘peer’ or other young person who also lives with sickle cell and who is trained in mentoring. Residents in North Central London can email mentors@sicklecellsociety.org for more information, and a leaflet for the scheme can also be found in this link.
Whittington
Patients of Whittington can also find more information about services and support here.