HCC COVID-19 Guidance

Choose NHS England COVID-19 Specialty Guides BSH COVID-19 Updates

Patient Pathway

Acute Management Sickle Cell Disease Choose 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 Choose 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 Choose 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 Choose 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 Choose 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 Choose British Dietetics Association Website Diet and Osteoporosis Advice Diet and Vitamin D Sickle Cell Nutrition Academy

G6PD Deficiency Choose G6PD Org Website MIMS Drugs to Avoid in G6PD Deficiency

Haemochromatosis Choose 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 Choose 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 Choose Pregnancy in SCD (S24) Pregnancy in Thalassaemic women (S25)

Referral, MDT and Workup Choose 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 Choose Perioperative management in SCD (S23.1) Peri-op transfusion in SCD (S23.2) Surgery in Adults with Thalassaemia (S56)

Transfusion and Exchange Choose 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 Choose 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 Choose HCC Open Clinical Studies and Trials (S87) RUDY Study

Methaemoglobinemia Choose Diagnosis and management of methaemoglobinemia (S85)

Rare inherited anaemia Choose Inherited anaemia, known relative diagnosis (S94) Inherited anaemia, relative testing for inconclusive diagnosis (S94.1)

Links

National Haemoglobinopathy Registry Choose National Haemoglobinopathy Registry Website National Haemoglobinopathy Registry Patient Information

OUH Transfusion Website Choose OUH Transfusion Website

Sickle Cell Disease Guidance Choose 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 Choose NCEPOD (2008): A Sickle Crisis? Sickle Cell Society – ‘No One’s Listening’ All-Party Parliamentary Group on Sickle Cell and Thalassaemia

Thalassaemia Guidance Choose 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 Standards for Clinical Care of Children and Adults Living with Thalassaemia in the UK (4th edition, UKTS)

Nursing

Nursing Care Plans and Nursing Documents Choose 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 downloadW

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 Choose 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 Choose 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 Choose 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 Choose 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) Choose 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) Choose 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 Choose 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 Choose Regional Annual Review FAQ - GW (S2.34) Great Western GP Vaccination Info Request Letter - GW (S2.85)

Milton Keynes Choose 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 Choose 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 Choose 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 Choose 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

Choose 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