HCC COVID-19 Guidance

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

Patient Pathway

Introduction: Paediatric Haematology Team Choose PH1 - Sickle-cell Team, Abbreviations, and Admission Procedure

Acute Management of Sickle Cell Disease Choose PH2 - Acute Management of Sickle Cell Disease (SCD) Crisis PH3 - Fever and Infection in SCD PH4 - Abdominal Complications in Children with SCD PH5 - Acute Chest Syndrome PH6 - Acute Anaemia (incl. aplastic crisis and splenic sequestration Hyperhaemolysis in adults and children with sicle cell disease (S72) PH7 - Stroke and CNS Manifestations in SCD PH8 - Transfer to PICU and HDU in SCD PH9 - Priapism in SCD PH10 - Renal Problems in SCD PH11 - Eye Problems in SCD

Management of Thalassaemia (Acute & Chronic) Choose PH12 - Thalassaemia Major Acute Presentation PH13 - Monitoring of Thalassaemia and Transfusion Dependent Anaemia PH14 - Thalassaemia Intermedia Guideline on Diagnosis and Management PH20 - Hydroxycarbamide in SCD and Thalassaemia PH21 - Orthopaedic Chronic Management with children in SCD and Thalassemia

Annual Review Choose PH26 - How to complete Annual Reviews PH27 - Specialist Proforma for Paediatric Annual Review PH35 - THAL and RIA Annual Review Proforma

Chelation Guideline and Iron Overload Choose PH15 - CLINICAL GUIDELINE - Chelation in Major Haemoglobinopathies

• Ferriscan Referral Form

Transfusion and Exchange Choose 2024 NHSBT genotyping programme request form 2024 NHSBT genotyping programme guidance PH16 - Transfusion Indications in SCD PH17 - Exchange Transfusion Procedure in SCD PH18 - Elective Transfusions in SCD Hyperhaemolysis in adults and children with sicle cell disease (S72)

• 2024 NHSBT genotyping programme request form
• 2024 NHSBT genotyping programme guidance

Surgery and Anaesthesia in Sickle Cell Disease Choose PH19.1 - Pre-Op Checklist for Patients with SCD PH19 - Surgery and Anaesthesia in Patients with SCD

Hydroxycarbamide in Sickle Cell Disease Choose PH20 - Hydroxycarbamide in SCD and Thalassaemia

Chronic Complications in Sickle-cell Disease Choose PH4 - Abdominal Complications in Children with SCD PH46 - Chronic Cardio-Respiratory complications in SCD PH11 - Eye Problems in SCD PH22 - Growth Delay in SCD PH23 - Nocturnal Enuresis in SCD PH21 - Orthopaedic Chronic Management with children in SCD and Thalassemia PH9 - Priapism in SCD PH10 - Renal Problems in SCD PH7 - Stroke and CNS Manifestations in SCD

Long-Term Management and Followup Choose Genetics Referral Pathway for Haemoglobinopathies (S79) PH24 - Long-term follow-up for Referral to BMT for Haemoglobinopathy Patients PH25 - Long-term Management and Follow-up in SCD PH28 - Painful Sickle Crisis - Pain Relief Plan PH29 - Children with Sickle Cell Disease - Parent information PH50 - Referral Pathway for Haemoglobinopathy Psychology Service: Wessex Network PH52 - Endocrine problems, including endocrinpathies and osteoporosis PH53 - Hepatobiliary Disease and Liver Disorders Referral Pathway to Psychology Service and Neurocognitive Assessment (S78) PH44 - Transcranial Doppler (TCD) Ultrasound Standard Operating Procedure

Transition Choose Paeds to adult service transition (S1) How to Adult: Quick tips to get your life together Transition passport (S1.5) Transition Of Young People with Haemoglobin Disorders from Paediatric to Adult Haematology Services (S99)

Treatments Choose Crizanlizumab HCC Pathway and Protocol (S82) Crizalizumab MDT Referral (S82.1) Crizalizumab Data Collection Form (S82.2) Crizanlizumab National Guideline

Dietary Advice Choose Sickle Cell Nutrition Academy

Referral, MDT and Workup Choose Crizalizumab MDT Referral (S82.1) HCC Haemoglobinopathy MDT Terms of Reference (S46) Referral forms - Oxford Genetics Laboratories - Oxford University Hospitals - OUH Rare Disease in Molecular Haematology Testing Service Genomic Panel Request Form - OUH

• MDT Review Proforma (Word) (S45)
• MDT Review for Patient Notes (Word) (S45.1)

Trials Choose HCC Open Clinical Studies and Trials (S87) Rare Diseases - NIHR BioResource Home Page

Methaemoglobinemia Choose

Rare inherited anaemia Choose

Links

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

OUH Transfusion Website Choose OUH Transfusion Website

Sickle Cell Disease Guidance Choose Acute painful episode: NICE Acute chest syndrome: BSH (2015) Sickle cell disease management. Clinical knowledge summary: NICE (2016) NHLBI Guidelines 2014 (USA) UK Standards for the clinical care of adults with sickle cell disease 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) Royal College of Emergency Medicine – Management of Presentations of Sickle Cell Disease in the Emergency Department Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care Significant haemoglobinopathies: guidelines for screening and diagnosis (BSH) (2010)

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 Thalassaemia International Federation - Publications United Kingdom Thalassaemia Society 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 Nursing Care Plan: Acute SC Crisis in Children (PH39) Lone Worker Procedure Haemoglobinopathy ANP (S47)

• Nursing Care Plan Template - right click to download)

NHSBT Exchange

• Red Cell Exchange Procedure Patient Information
• Red Cell Exchange Referral

Patient Information

Patient Information Choose Anthony Nolan Sickle Cell Site Blood Transfusion in SCD (NHSBT) Careers Information (S64) Children with Sickle Cell Disease - Parent information (PH29) Children's Haemoglobinopathy and Red Cell Disorders Service: Information for parents and carers 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) Enuresis in Sickle Cell (PH30) G6PD Deficiency (S80) Giving medicines to babies and young children for parents (PH54) Haemoglobin H Disease (S76) Hydroxycarbamide (S48) Information on Incentive Spirometry: Parent Guide (PH34) 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 the Adult Service (video) My Baby has Thalassaemia Leaflet Needle Phobia Booklet NHSBT patient information sheet for Sickle Cell and Thalassaemia Blood Group Genotyping Programme Painful Sickle Crisis - Pain Relief Plan (PH28) Parent’s guide to Sickle Cell Disease Patient information booklet (S102) Patient Information Leaflet on Hydroxycarbamide Use (PH31) Housing needs for patients with SCD thallassaemia or rare inherited anaemia (S98) Oxbryta patient brochure Priaprism Patient Information (S49) Priapism and what to do if you experience it Public/parents: Hydroxycarbamide Red-cell Exchange: Top tips (S81) Research - Sickle Cell Anaemia: Ask the expert (2022) School Guide (PH33) Sickle Cell Disease – Having a baby at risk of SCD (Public Health England) Sickle Retinopathy (S20.1) Supersickle Website Thalassaemia – Having a baby at risk of Thalassaemia (Public Health England) Transcranial Doppler Screening Parent Information (PH45) 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 Don’t forget your penicillin (CAN) Government Financial Help YouTube Video Hydroxycarbamide - Video (CAN) Sickle-cell Society YouTube Videos

Service Information Leaflets Choose Hampshire Hospitals NHS FT - Service Information (PH43.1) Isle of Wight NHS Foundation Trust - Service Information (PH43.2) Milton Keynes University Hospitals NHS FT - Service Information (PH42.2) Great Western NHS FT - Service Information (PH42.3) Frimley Health NHS FT (Wexham Park site) - Service Information (PH42.4) Buckinghamshire Healthcare NHS FT - Service Information (PH42.5) Oxford University Hospitals NHS FT - Service Information (PH42) Oxford University Hospitals NHS FT - Psychology Service Information (PH47) Royal Berkshire NHS FT - Service Information (PH42.1) Salisbury NHS FT - Service Information (PH43.3) University Hospitals Southampton NHS FT - Service Information (PH43)

Staff Education

Choose BSH Patient perspective: the journey of pain in sickle cell disease E-learning for health – health inequalities Hydroxycarbamide in SCD Management of acute presentations of sickle cell NHP Education Resources The Red Cell Network The Red Cell Network - sickle cell disease bitesize sessions Patient Blood Management - Education Sickle cell disease: I wanted to get people talking The Red Cell Network Education Videos

• 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 Paediatric Haemoglobinopathy Operational Policy (S1.2) Southampton Paeds Service Operational Policy (S1.4) Wessex and Thames Valley Network Structure (S75.1) Wessex and Thames Valley HCC Leadership and Clinical Teams (S75.2)

• Audit Report Form (Word) (S74)

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)

Buckinghamshire Choose

Great Western Choose

Milton Keynes Choose

Royal Berkshire Choose Berkshire Basic Service Guide Berkshire Service Guide for New Mums Berkshire Service Guide for Youth

Wexham Park Choose

GP Haemoglobinopathy Information

Choose Alpha Thalassaemia Information for Health Professionals (W118) Hydroxycarbamide in sickle cell - shared care protocol (PH51) Haemoglobinopathy Carrier Information

Helpful Websites and Contacts

NHS Choices

• Sickle Cell Disease
• Thalassaemia

Sickle cell Society

• Tel: 020 8961 7795/8346
  info@sicklecellsociety.org
  http://sicklecellsociety.org

UK thalassaemia Society

• http://ukts.org

Thalassaemia International

• www.thalassaemia.org.cy

Diamond Blackfan Anaemia (DBA)

• Diamond Blackfan Anaemia (DBA) Charity

General Health and Wellbeing Advice

• www.ouh.nhs/patient-guide/here-for-health/default.aspx