Haematology

HCC COVID-19 Guidance

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

Patient Pathway

Acute Management Sickle Cell Disease Choose Urgent Inter-Hospital Transfer Checklist (S62) How to Use Incentive An Spirometer (S52) Painful crisis in SCD (S8) Sepsis in SCD (S9) Clinical guideline: the acute chest syndrome in patients with sickle cell disease (S10) Abdominal pain and jaundice in SCD (S11.1) Abdominal crises in SCD (S11.2) Acute Anaemia in SCD (S12) Acute neurological crises in SCD or Thal (S13) Eye Complications in SCD (S20) Fever and Sepsis in Transfusion Dependent Haemoglobinopathy (S33) Priapism in SCD (S14) Acute renal failure in SCD (S15) Haematuria in SCD (S16) Hyperhaemolysis in adults and children with sickle-cell disease (S72) Perioperative management in SCD (S23.1) Peri-op transfusion in SCD (S23.2) BSH Guidelines for the Use of Hydroxycarbamide in Children and Adults with Sickle-cell Disease

Acute Management Thalassaemia Choose Acute complications in Thal (S28) Fever and Sepsis in Transfusion Dependent Haemoglobinopathy (S33) Surgery in Adults with Thalassaemia (S56)

Annual Review Choose Sickle Cell Annual Review Proforma (S2.00) Thalassaemia Annual Review Proforma (S2.01) Rare Inherited Anaemias Annual Review Proforma (S2.02) Annual Review Letter (S2.2) Annual Review Regional Patient List (S2.7) Annual Review Blood and Urine Tests SCD & Thal (S2.4) NHR Consent Form (S2.1) Vaccination Letter: Patient to GP (S2.87) Eye Health Review SCD, Optometrist - OUH (S58.1) Eye Health Review SCD, Optometrist - Frimley (S58.3)

• OUH GP Vaccination Info Request Letter (Word) (S2.81)
• Frimley Park GP Vaccination Info Request Letter (Word) (S2.82)

Chelation - Iron Overload Choose 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

Dietary Advice Choose British Dietetics Association Website Diet and Osteoporosis Advice Diet and Vitamin D

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

Haemochromatosis Choose Haemochromatosis Website Haemochromatosis Leaflet July 2016 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 Kidney Disease in SCD Primary Care (S18.1) Chronic Pain in SCD (S32) Endocrinopathies in SCD or Thal (S22) Eye Complications in SCD (S20) Hydroxycarbaminde in SCD or Thal (S26) Hydroxycarbamide Monitoring Table (S26.1) Individualised Sickle-cell Care Plan Oxford (S36.1) NOC Referral - Haematology Exception Request (S19.1) Orthopaedic complications in SCD or Thal (S19) Preventing infection in SCD and Thal (S27) Routine OPD 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 Referral to the Haemoglobinopathy Service (S37) New Patient Assessment (S38) ODN Haemoglobinopathy MDT Terms of Reference (S46)

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

Transfusion and Exchange Choose Transfusion in SCD (S4) Acute and Elective Red cell Exchange in SCD (S5) Acute Outreach Automated Red-cell Exchange Pathway (S5.1) 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) 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)

Transition Choose Paeds to adult service transition (S1) How to Adult: Quick tips to get your life together

Trials Choose

Links

National Haemoglobinopathy Registry Choose National Haemoglobinopathy Registry Patient Information

OUH Transfusion Website Choose OUH Transfusion Website

Sickle Cell Disease Guidance Choose Acute painful episode: NICE Acute chest syndrome: BSH (2015 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) NHLBI Guidelines 2014 (USA) NHSE Adult BMT Guidance for SCD 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?

Thalassaemia Guidance Choose UKTS (2016) TIF(2013) Non Transfusion dependent guidelines TIF(2016) Transfusion dependent guidelines

Nursing

Nursing Care Plans and Nursing Documents Choose Acute sickle cell crisis Nursing Care Plan (S3) Ad-hoc Telephone Clinic Call Data Capture (S51) Patient management during acute or planned apheresis/automated exchange/dialysis procedures (N120) Lone Worker Procedure Haemoglobinopathy ANP (S47) Pain Relief Assessment Table (S39) Vortex Port Management (S60)

• Nursing Care Plan Template - right click to downloadW

NHSBT Exchange

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

Patient Information

Patient Information Choose A parent’s guide to managing sickle cell disease Baby at Risk of Having Thalassaemia In Brief Baby at Risk of Having Sickle-cell Disease In Brief COVID-19 Adult sickle cell disease patient information (S69) Moving to the Adult Haemoglobinopathy Service (S34) Adult Red Cell Service (OMI 5549P) Careers Information (S64) How to Use An Incentive Spirometer (S52) DLA & PIP (S65) Fatigue Diary (S53) Guide to Sickle-cell and Employment (v1 - 2019) Hereditary Spherocytosis Patient Information (CAN) Hydroxycarbamide Patient Information (S48) Contact Preferences and Details for Events (S54) One Hour per unit blood transfusions for adults with transfuion dependent thalassemia (S73.2) Priaprism Patient Information (S49) Sickle Retinopathy (S20.1) Travel information for people with sickle cell disease and thalassaemia (S63) RCOG PI sickle cell disease and pregnancy RCOG PI Beta thalassaemia and pregnancy

Patient Questionnaires Choose Service Questionnaire 1 - SCDThal (S61.1) Service Questionnaire 2 - All Others (S61.2) Service Questionnaire 3 - Annual Review (S61.3)

Patient Videos Choose Why it's important to take your penicillin every day Sickle-cell Society Youtube Videos

Education

Education Choose BSH Patient perspective: the journey of pain in sickle cell disease Hydroxycarbamide education session NHP Education Resources NICE Educational Resource (Powerpoint document) Other Haemoglobin Disorders - Noémi Roy - 5 Oct 2016 Sickle cell disease: I wanted to get people talking Thames Valley Haemoglobinopathy ODN - Wale Atoyebi - 5 Oct 2016 UK Forum on Haemoglobin Disorders - Publications

Haemoglobinopathy Coordinating Centre (HCC)

• National Haemoglobinopathy Panel Website

HCC Choose Operational Policy (S1.1) Regional Annual Review Letter - Oxford (S2.3) Individualised Sickle-cell Care Plan ODN Template (S36.0) Operational Delivery Network (ODN) Terms of Reference (S44.0)

• Individualised Sickle-cell Care Plan ODN Template (Word) (S36.0)

Buckinghamshire Choose

Great Western Choose Regional Annual Review FAQ - GW (S2.34) Regional Annual Review Intro Letter - GW (S2.34.1) GP AR Vaccination Information Request Letter - GW (S2.85)

Milton Keynes Choose Annual Review FAQ Letter (S2.32) Individualised Sickle-cell Care Plan ODN MKUH Template (S36.2)

• Individualised Sickle-cell Care Plan ODN MKUH Template (Word) (S36.2)

Royal Berkshire Choose Regional Annual Review Letter - RBH (S2.33) Regional Annual Review Letter Blood Tests - RBH (S2.331) Individualised Sickle-cell Care Plan ODN (S36.3)

Wexham Park/Frimley Health Choose S2.31 Regional Annual Review Letter - Frimley Individualised Sickle-cell Care Plan ODN WPH Template (S36.4)

• Individualised Sickle-cell Care Plan ODN WPH Template (Word) (S36.4)

GP Haemoglobinopathy Information

Choose Alpha Thalassaemia Information for Health Professionals (W118) Haemoglobinopathy Carrier Information

Helpful Websites and Contacts

Active 10

• Active 10 Website

Brent Sickle Cell and Thalassaemia Centre

• London North West Healthcare NHS Trust

General Health and Wellbeing Advice

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

NHS Choices

• Sickle Cell Disease
• Thalassaemia

OUH Red Cell Service Coordinator

• Tel: 01865 227826

Sickle cell Society

• 54 Station Rd,
  London, NW10 4UA
  Tel: 020 8961 7795/8346
  info@sicklecellsociety.org
  http://sicklecellsociety.org

Social Study of Thalassaemia and Sickle cell Study Group: De Montfort University

• www.tascunit.com

Thalassaemia International

• www.thalassaemia.org.cy

UK thalassaemia Society

• http://ukts.org