Camden Sickle Cell and Thalassaemia Service
The Camden Sickle Cell and Thalassaemia Service is a shared service for NHS Islington and Camden PCT. The service is delivered from the Sickle Cell and Thalassaemia centre based in Holloway. The centre provides dynamic, integrated, holistic services that place people with, or at risk of, sickle cell and thalassaemia at the centre of care, by recognising and addressing the complex needs of individuals and families affected by these conditions.
UK Thalassaemia Society Patient Involvement
Get involved with events with the UKTS. Get moving with a Saturday morning exercise class, show off your artistic flair in an art competition, or become an advocate for fellow patients - there is something for everyone.
UCLH Patient Information Leaflets
- Psychological support for adults with red cell disorders
- Guide to services for people with red cell and iron disorders
- Automated red cell exchange for patients with sickle cell disorder
- Femoral lines for red cell exchange
- Community sickle cell and thalassaemia services
- Desferal treatment for iron overload
- Deferasirox treatment for iron overload
- Glucose-6-phosphate dehydrogenase (G6PD) deficiency
- Hydroxyurea for treatment of sickle cell disorder
- Incentive spirometry
- Medications, vaccinations and travel in sickle cell disorder
- Priapism in patients with sickle cell disorder
- Sexual health, contraception and preparing for pregnancy
- Sickle cell disorder and pregnancy
- Sickle cell disorder in adulthood
- Sickle cell disorder in children
- Information for Sickle Cell Disorder patients who may need a blood transfusion
- Transcranial dopplers (TCD)
- Treatment options for iron overload
- Hereditary spherocytosis
- Alpha thalassaemia
- Medications, vaccinations and travel in thalassaemia
- Thalassaemia and pregnancy
- Thalassaemia (transfusion-dependent and non-transfusion-dependent)
Black Thrive
National Haemoglobinopathy Panel
Condition information:
National charities:
NHS organisations:
International websites:
- Sickle Cell Information Center
- Centers for Disease Control and Prevention – Sickle Cell Disorder
- Centers for Disease Control and Prevention – Thalassaemia
- Global Sickle Cell Disorder Network
- American Sickle Cell Anemia Association
- Sickle Cell Cohort Research (SCORE)
- Thalassaemia International Federation
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Hospital |
Clinical Lead Adults |
Clinical Lead Paediatrics |
Contact Details |
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University College London Hospitals NHS Foundation Trust |
Prof John Porter Dr Sara Trompeter Dr Perla Eleftheriou Dr Emma Drasar |
Dr Andrea Leigh |
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Whittington Health NHS Trust |
Dr Emma Drasar |
Dr Andrew Robins |
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North Middlesex University Hospital NHS Foundation Trust |
Stephen Boyd |
Dr Olu Wilkey |
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Imperial College Healthcare NHS Trust |
Dr Mark Layton
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Dr Josu De La Fuente |
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St George’s University Hospitals NHS Foundation Trust |
Dr Julia Sikorska |
Dr Alison Thomas |
julia. Alison.
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Oxford University Hospitals NHS Trust |
Dr Noémi Roy |
Dr Amrana Qureshi |
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University Hospitals Bristol NHS Foundation Trust |
Dr Sanne Lugthart |
Dr Michelle Cummins |
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University Hospital Southampton NHS Foundation Trust |
Dr Srini Narayanan |
Dr Galina Jigoulina |
NCL Community Engagement Event 2022
In June 2022, Dr Olu Wilkey (NMUH) and Dr Andrea Leigh (UCLH) successfully hosted an NCL community engagement event at Tottenham Hotspurs’ Stadium. The event was engaging, informative and well attended, with lots of input from healthcare professionals and charities. Watch the Q&A session with the Expert Panel.
New resource to mark World Sickle Cell Day 2023 - Anthony Nolan/Stem cell transplant
To mark World Sickle Cell Day 2023, Anthony Nolan have shared their brand-new resource for people with sickle cell disorder considering a stem cell transplant. Having a stem cell transplant has been a possible treatment option for adults with severe sickle cell disorder in the UK since 2020. As it is the only curative treatment option currently available, it’s likely patients will have questions whether this could be an option for them. Please visit Anthony Nolan's dedicated web page for sickle cell disorder.
Priapism
The Sickle Cell Society have released a useful video on Priapism and what to do if you experience it. To watch the video and for further information, please visit A Simple Guide to Priapism.
TRCN Patient Information Session on Research
The Red Cell Network held a Research Information session which was open to all Red Cell Patients who wanted to learn more about the research process. The session was a huge success and gave patients the opportunity to ask questions freely, and air any concerns they had about becoming engaged with research.
In the second part of the session Eliane Young, a psychologist from Addenbrooke's hospital in Cambridge, talked about a study which focuses on the psychology associated with getting older and living with Sickle Cell Disorder. It is the first of its kind in the UK, and will be open initially to patients in the East Anglia and North Central London region. View the full recording of the patient information session.
Dr Claudine Matthews delivers a 'world-first' series of workshops focused on nutrition in Thalassaemia on behalf of The Red Cell Network in partnership with the UK Thalassaemia Society. Get your pen and paper and check out the lectures to pick up a few pro tips.
You could save money on your prescriptions
If you are on a low income, or pay for more than three prescription items in three months, or 11 items in 12 months, you could save money on your prescriptions.
A Prescription Prepayment Certificate covers all NHS prescriptions for a set pre-paid price, or spread over 10 direct debit payments.
People on a low income could be entitled to help with costs or free prescriptions through the low income scheme, depending on your circumstances.
Check if you’re eligible for free prescriptions and find out more about the Prescription Prepayment Certificates.
View the Sickle Cell Prescription Prepayment Certificate Poster and the Sickle Cell Eligibility Checker Poster.
The Sickle Cell Society (SCS) and the UK Thalassaemia Society (UKTS) have worked in partnership with the NHS sickle cell and thalassaemia (SCT) screening programme to engage with communities less likely to access health information through usual NHS channels. The societies provide feedback from people that share the same population background or have experience of the condition and to feed into the programme updates and improvements.
To develop strategies for supporting parents with a newborn carrier or positive screening test result, the SCS and the UKTS undertook user feedback sessions to understand how health professionals communicate sickle cell and thalassaemia results to parents as part of the screening pathway and how support could be improved. The overall aim of the sessions was to share feedback on the lessons learned from the experiences of parents, so the screening programme can update its standards and guidelines and public and professional educational resources.
Read the full report and its recommendations.
The politics of nutrition in sickle cell disease: improving access and outcomes
Dr Claudine Matthews, a close collaborator with The Red Cell Network, is making great strides in bringing nutritional care into the mainstream of treatment for haemoglobinopathy patients. Her recent article made the front cover of BDA The Association of UK Dietitians and you can read the article.