Adult Red Cell Service
(Including Sickle-cell disease)
HCC COVID-19 Guidance
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NHS England COVID-19 Specialty Guides
BSH COVID-19 Updates
Patient Pathway
Acute Management Sickle Cell Disease
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Abdominal crises in SCD (S11.2)
Abdominal pain and jaundice in SCD (S11.1)
Acute Anaemia in SCD (S12)
Acute and Elective Red cell Exchange in SCD (S5)
Acute neurological crises in SCD or Thal (S13)
Acute renal failure in SCD (S15)
BSH Guidelines for the Use of Hydroxycarbamide in Children and Adults with Sickle-cell Disease
Clinical guideline: the acute chest syndrome in patients with sickle cell disease (S10)
Eye Complications in SCD (S20)
Fever and Sepsis in Transfusion Dependent Haemoglobinopathy (S33)
G6PD Deficiency (S80)
Guideline for the management of patients with sickle cell disease in the emergency department (ED003)
How to Use Incentive An Spirometer (S52)
Haematuria in SCD (S16)
Hyperhaemolysis in adults and children with sickle-cell disease (S72)
Management of acute painful crisis - Frimley Health (S8.1)
Painful crisis in SCD (S8)
Priapism in SCD (S14)
Perioperative management in SCD (S23.1)
Peri-op transfusion in SCD (S23.2)
Sepsis in SCD (S9)
Unwell Patient Discussion Checklist (S62)
Acute Management Thalassaemia
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Acute complications in Thal (S28)
Annual review HCC template for Thalassaemia or rare inherited anaemia (S2.90)
Fever and Sepsis in Transfusion Dependent Haemoglobinopathy (S33)
Surgery in Adults with Thalassaemia (S56)
Annual Review, Vaccination Letters, Bloods
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Sickle Cell Annual Review Proforma (S2.00)
Templates for auto-text in electronic patient records (S2.89)
Thalassaemia Annual Review Proforma (S2.01)
Annual Review Letter (S2.2)
Annual Review Blood and Urine Tests SCD & Thal (S2.4)
How to Complete Annual Reviews (S2.03)
Vaccination Letter: Patient to GP (S2.87)
Buckinghamshire GP Vaccination Info Request Letter (Word) (S2.86)
Frimley Park GP Vaccination Info Request Letter (Word) (S2.82)
Great Western GP Vaccination Info Request Letter (Word) (S2.85)
Milton Keynes GP Vaccination Info Request Letter (Word) (S2.83)
OUH GP Vaccination Info Request Letter (Word) (S2.81)
Royal Berkshire GP Vaccination Info Request Letter (Word) (S2.84)
Southampton GP Vaccination Info Request Letter (Word) (S2.88)
Templates for auto-text in electronic patient records (S2.89)
Chelation - Iron Overload
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Chelation combination therapies (S7.4)
Deferiprone in SCD or Thal (S7.1)
Deferasirox in SCD or Thal (S7.2)
Deferasirox Chelation Drug Management Table (S7.21)
Desferrioxamine in SCD or Thal (S7.3)
Non-transfusion Iron Overload in Patients with Inherited Anaemias (S30)
Ferriscan Referral Form
Treatments
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Crizanlizumab National Guideline
Crizanlizumab HCC Pathway and Protocol (S82)
Crizalizumab MDT Referral (S82.1)
Crizalizumab Data Collection Form (S82.2)
Hydroxycarbaminde in SCD or Thal (S26)
Hydroxycarbamide Monitoring Table (S26.1)
Voxelotor Treatment Protocol: Easy access to medicine scheme (S83)
Voxelotor MDT Referral Form (S83.1)
Voxelotor National Guidance
Dietary Advice
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British Dietetics Association Website
Diet and Osteoporosis Advice
Diet and Vitamin D
G6PD Deficiency
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G6PD Org Website
MIMS Drugs to Avoid in G6PD Deficiency
Haemochromatosis
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Haemochromatosis Website
Haemochromatosis Screening and Management (S59)
Haemochromatosis Telemed Letter (S59.1)
Haemochromatosis Relatives Letter RE Testing (S59.2)
Investigation of a raised ferritin (S59.3)
Long-Term Management and Followup
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Cardiac problems in SCD (S21)
Chronic complications in SCD (S68)
Chronic kidney disease in SCD (S18)
Chronic Pain in SCD (S32)
Endocrinopathies in SCD or Thal (S22)
Eye Complications in SCD (S20)
Genetics Referral Pathway for Haemoglobinopathies (S79)
Individualised Sickle-cell Care Plan Oxford (S36.1)
NOC Referral - Haematology Exception Request (S19.1)
Orthopaedic complications in SCD or Thal (S19)
Referral Pathway for Haemoglobinopathy Psychology Service: Wessex Network (S78.1)
Referral Pathway to Psychology Service and Neurocognitive Assessment (S78)
Routine Outpatient Review Proforma (S41)
Thalassaemia: Liver monitoring and management: Clinic Guideline (S67)
Splenectomy in Non-transfusion Dependent Thalassaemia (NTDT) (S31)
Vitamin D: Oxfordshire CCG Prescribing Guidelines
Individualised Sickle Cell Care Plan for Oxford Template (Word) (S36.1)
Pregnancy
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Pregnancy in SCD (S24)
Pregnancy in Thalassaemic women (S25)
Referral, MDT and Workup
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Crizalizumab MDT Referral (S82.1)
MDT Review Proforma (Word) (S45)
Referral to the Oxford and Southampton Hemoglobinopathy Service (S37)
Referral forms - Oxford Genetics Laboratories - Oxford University Hospitals - OUH
Rare Disease in Molecular Haematology Testing Service Genomic Panel Request Form - OUH
New Patient Assessment - SCD (S38)
New Patient Assessment - Thal (S38.1)
New Patient Assessment - RIA (S38.2)
Voxelotor MDT Referral Form (S83.1)
HCC Haemoglobinopathy MDT Terms of Reference (S46)
MDT Review Proforma (Word) (S45)
MDT Review for Patient Notes (Word) (S45.1)
Voxelotor MDT Referral (Word) (S83.1)
Surgery
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Perioperative management in SCD (S23.1)
Peri-op transfusion in SCD (S23.2)
Surgery in Adults with Thalassaemia (S56)
Transfusion and Exchange
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2024 NHSBT genotyping programme request form
2024 NHSBT genotyping programme guidance
Transfusion in SCD (S4)
Acute and Elective Red cell Exchange in SCD (S5)
Hyperhaemolysis in adults and children with sicle cell disease (S72)
Manual exchange in SCD (S6)
Peri-op transfusion in SCD (S23.2)
Planning Proforma for Automated Red cell Exchange (S50)
Indication for transfusion in Non transfusion dependent thalassaemia (NTDT) (S29)
Vortex Port Management (S60)
Protocol for one hour per unit blood transfusion for transfusion dependent thalassaemia patients (S73)
Patient plan: One hour per unit blood transfusion in transfusion dependent thalassaemia (S73.1)
Patient Information: One hour per unit blood transfusion in transfusion dependent thalassaemia (S73.2)
2024 NHSBT genotyping programme request form
2024 NHSBT genotyping programme guidance
Transition
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Paeds to adult service transition (S1)
Transition passport (S1.5)
Transition Of Young People with Haemoglobin Disorders from Paediatric to Adult Haematology Services (S99)
Trials
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HCC Open Clinical Studies and Trials (S87)
RUDY Study
Methaemoglobinemia
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Diagnosis and management of methaemoglobinemia (S85)
Rare inherited anaemia
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Inherited anaemia, known relative diagnosis (S94)
Inherited anaemia, relative testing for inconclusive diagnosis (S94.1)
Links
National Haemoglobinopathy Registry
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National Haemoglobinopathy Registry Website
National Haemoglobinopathy Registry Patient Information
OUH Transfusion Website
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OUH Transfusion Website
Sickle Cell Disease Guidance
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Acute chest syndrome: BSH (2015)
Acute painful episode: NICE
Guidelines on red cell transfusion in sickle cell disease. Part I: principles and laboratory aspects (BSH)(2017)
Guidelines on red cell transfusion in sickle cell disease Part II: indications for transfusion (BSH) (2017)
Management of sickle cell disease in pregnancy – BSH Guidance
NHLBI Guidelines 2014 (USA)
NHSE Adult BMT Guidance for SCD
NHS Screening Programme (Gov.UK)
Royal College of Emergency Medicine – Management of Presentations of Sickle Cell Disease in the Emergency Department
Sickle cell disease management. Clinical knowledge summary: NICE (2016)
Significant haemoglobinopathies: guidelines for screening and diagnosis (BSH) (2010)
UK Standards for the clinical care of adults with sickle cell disease
Sickle Cell Disease Reports
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NCEPOD (2008): A Sickle Crisis?
Sickle Cell Society – ‘No One’s Listening’ All-Party Parliamentary Group on Sickle Cell and Thalassaemia
Thalassaemia Guidance
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Guidelines for the Management of α-thalassaemia
NHS Screening Programme (Gov.UK)
TIF(2013) Non Transfusion dependent guidelines
TIF(2021) Guidelines for the Management of Transfusion Dependent Thalassaemia
UKTS (2016)
Home
Nursing
Nursing Care Plans and Nursing Documents
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Acute sickle cell crisis Nursing Care Plan (S3)
Patient management during acute or planned apheresis/automated exchange/dialysis procedures (S5.2)
Lone Worker Procedure Haemoglobinopathy ANP (S47)
Vortex Port Management (S60)
Vortex Port Management (education, ppt)
Nursing Care Plan Template -
right click to download
W
NHSBT Exchange
Red Cell Exchange Procedure Patient Information
Red Cell Exchange Referral
Haemoglobinopathies DNA Diagnostics
Form A - instruction letter
Form B - info sheet for patients
Form C - patient consent form
Form D - cellbank request form
Patient Information
Patient Information
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Anaemia Information for Employers (S96)
Anthony Nolan Sickle Cell Site
Blood Transfusion in SCD (NHSBT)
Careers Information (S64)
Cost of Living Management - Ideas (2022)
Deferasirox treatment for iron overload (S7.33)
Desferrioxamine treatment for iron overload - a parent's a patient guide (S7.32)
DLA & PIP (S65)
Employment and Sickle Cell Disease (2019)
Enuresis in Sickle Cell (PH30)
Fatigue Diary (S53)
G6PD Deficiency (S80)
Hereditary Spherocytosis (CAN)
Haemoglobin H Disease (S76)
Hydroxycarbamide (S48)
Hydroxycarbamide - Video (CAN)
How to Adult: Quick tips to get your life together
Incentive Spirometer (S52)
Incentive Spirometer – Video
Living with Sickle Cell Disorder (The Red Cell Network)
Managing medication and prescription charges (S97)
Moving into a new educational setting (S100)
Moving to the Adult Haemoglobinopathy Service Transition (S88)
Moving to Adult Service Video - Information for Haemoglobinopathy Patients and families
Needle Phobia Booklet
NHSBT patient information sheet for Sickle Cell and Thalassaemia Blood Group Genotyping Programme
Nutrition Support (OMI 69128)
Parent’s guide to Sickle Cell Disease
Patient information booklet (S102)
Housing needs for patients with SCD thallassaemia or rare inherited anaemia (S98)
Oxbryta patient brochure
Portacath Advice (S60.1)
Pregnancy: Screening for Sickle Cell and Thallassaemia (NHS England)
Priapism (S49)
Priapism and what to do if you experience it
Red-cell Exchange: Top tips (S81)
Research - Sickle Cell Anaemia: Ask the expert (2022)
Sickle Cell Disease – Having a baby at risk of SCD (Public Health England)
Sickle Retinopathy (S20.1)
Sleep Information (S77)
Thalassaemia – Having a baby at risk of Thalassaemia (Public Health England)
Transfusion dependent thalassaemia – 1 hour per unit transfusions (S73.2)
Travel Information (S63)
For clinical teams - patient information resources (Word) (S92)
Wessex and Thames Valley Haemoglobinopathy Coordinating Centre YouTube channel
Patient Videos
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Acute Chest Syndrome Patient Information YouTube Video
Ask the expert: sickle cell anaemia
Don’t forget your penicilin (CAN)
Government Financial Help YouTube Video
SCD Patients' Educational Session at ASCAT January 2022: Spotlight on Mental Health
Sickle-cell Society YouTube Videos
Speeches from people living with SCD and health professionals: SCD Education Session at ASCAT 2022
Webinars for patients with Sickle Cell Disease
Wessex & Thames Valley HCC YouTube Videos
Service Information Leaflets
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Buckinghamshire NHS FT - Service Information (S90.5)
Frimley Health NHS FT - Service Information (S90.2)
Great Western Hospitals NHS FT - Service Information (S90.4)
Hampshire Hospitals NHS FT - Service Information (S91.1)
Milton Keynes University Hospitals NHS FT - Service Information (S90.1)
Oxford University Hospitals NHS FT - Psychology Service Information (S93)
Oxford University Hospitals NHS FT - Service Information (S90)
Portsmouth Hospitals University NHS FT - Service Information (S91.3)
Royal Berkshire NHS FT - Service Information (S90.3)
Salisbury NHS FT - Service Information (S91.4)
University Hospitals Dorset NHS FT - Service Information (S91.2)
University Hospitals Southampton NHS FT - Service Information (S91)
University Hospitals Sussex St Richards - Service Information (S91.5)
Staff Education
Education
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BSH Patient perspective: the journey of pain in sickle cell disease
E-learning for health – health inequalities
Hydroxycarbamide in S - video
NHP Education Resources
The Red Cell Network
The Red Cell Network - sickle cell disease bitesize sessions
Management of acute presentations of sickle cell
NICE Educational Resource (Powerpoint document)
Other Haemoglobin Disorders - Noémi Roy - 5 Oct 2016
Patient Blood Management - Education
Sickle cell disease: I wanted to get people talking
Sickle Cell Disorder and Crisis - Sandy Hayes, Red Cell Service Clinical Nurse Specialist
Thames Valley Haemoglobinopathy ODN - Wale Atoyebi - 5 Oct 2016
UK Forum on Haemoglobin Disorders - Publications
The Red Cell Network Education Videos
Vortex Port Management (education, ppt)
Wessex and Thames Valley Haemoglobinopathy Coordinating Centre YouTube channel
Wessex and Thames Valley Haemoglobinopathy Network
National Haemoglobinopathy Panel Website
HCC (operational policies, terms of references, structure)
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Haemoglobinopathy Specialised commissioning service specifications
HCC Haemoglobinopathies Meetings Schema (S75.7)
HCC Terms of Reference (S75)
Oxford Adult Service – Operational policy (S1.1)
Southampton Adult Service - Operational Policy (S1.3)
Regional Annual Review Letter - Oxford (S2.3)
Individualised Sickle-cell Care Plan ODN Template (S36.0)
Wessex and Thames Valley Network Structure (S75.1)
Wessex and Thames Valley HCC Leadership and Clinical Teams (S75.2)
Templates for auto-text in electronic patient records (S2.89)
Individualised Sickle-cell Care Plan ODN Template (Word) (S36.0)
Templates for auto-text in electronic patient records (S2.89)
Strategies and Programmes (Audit, Research, Education, Patient Engagement)
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Patient Engagement Strategy (S75-3)
HCC Research Strategy (S75-4)
Education Strategy (S75-5)
Audit Programme (S75-6)
Audit Report Form [Word] (S74)
Hydroxycarbamide Audit Data Collection Tool [Excel] (S74.1)
Acute Chest Syndrome Audit Data Collection Tool [Excel] (S74.2)
Genotype Audit Data Collection Tool [Excel] (S74.3)
Time to Analgesia Admissions Data [Excel] (S74.4)
Renal Assessment Data Collection Tool [Excel] (S74.5)
Time to Analgesia Admissions Data [Excel] (S74.4)
Buckinghamshire
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Buckinghamshire GP Vaccination Info Request Letter (Word) (S2.86)
Regional Annual Review FAQ - BHT (S2.35)
Individualised Sickle-cell Care Plan ODN BHT Template (S36.5)
Individualised Sickle-cell Care Plan ODN BHT Template (S36.5)
Great Western
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Regional Annual Review FAQ - GW (S2.34)
Great Western GP Vaccination Info Request Letter - GW (S2.85)
Milton Keynes
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Annual Review FAQ Letter (S2.32)
Individualised Sickle-cell Care Plan ODN MKUH Template (S36.2)
Milton Keynes GP Vaccination Info Request Letter (Word) (S2.83)
Individualised Sickle-cell Care Plan ODN MKUH Template (Word) (S36.2)
Royal Berkshire
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Berkshire Basic Service Guide
Berkshire Service Guide for New Mums
Berkshire Service Guide for Youth
Regional Annual Review Letter - RBH (S2.33)
Regional Annual Review Letter Blood Tests - RBH (S2.331)
Royal Berkshire GP Vaccination Info Request Letter (Word) (S2.84)
Individualised Sickle-cell Care Plan ODN (S36.3)
Individualised Sickle-cell Care Plan ODN RBH Template (Word) (S36.3)
Southampton
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Individualised Sickle-cell Care Plan ODN (S36.6)
Southampton GP Annual Review Vaccination Information Request (S2.88)
Individualised Sickle-cell Care Plan ODN Southampton Template (Word) (S36.3)
Wexham Park/Frimley Health
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S2.31 Regional Annual Review Letter - Frimley
Individualised Sickle-cell Care Plan ODN WPH Template (S36.4)
Frimley Park GP Vaccination Info Request Letter (Word) (S2.82)
Individualised Sickle-cell Care Plan ODN WPH Template (Word) (S36.4)
GP Haemoglobinopathy Information
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Alpha Thalassaemia Information for Health Professionals (W118)
Chronic Kidney Disease in SCD Primary Care (S18.1)
Haemoglobinopathy Carrier Information
Preventing infection in SCD and Thal (S27)
Opiods and chronic pain - Oxford University Hospitals (ouh.nhs.uk)
Helpful Websites and Contacts
Active 10
Active 10 Website
Diamond Blackfan Anaemia (DBA)
Diamond Blackfan Anaemia (DBA) Charity
General Health and Wellbeing Advice
https://www.ouh.nhs.uk/patient-guide/here-for-health/
NHS Choices
Sickle Cell Disease
Thalassaemia
OUH Red Cell Service Coordinator
Tel: 01865 235185
Sickle cell Society
Tel: 020 8961 7795/8346
info@sicklecellsociety.org
http://sicklecellsociety.org
Thalassaemia International
www.thalassaemia.org.cy
UK thalassaemia Society
http://ukts.org