- Reference Number: HEY1676/2026
- Departments: Haematology
- Last Updated: 31 March 2026
Introduction
This leaflet has been produced to give you general information about your diagnosis. Most of your questions should be answered by this leaflet. It is not intended to replace the discussion between you and your doctor but may act as a starting point for discussion. If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team caring for you.
What is Sickle Cell Disease
Sickle cell disorders are a group of illness which affect your red blood cells. Sickle cell anaemia is a genetic condition, which means it is passed on from your parents, and you were born with it, you cannot catch it from other people. Sickle cell is most common in people of African, West Indian (Caribbean) descent, but may also occur in people from India, Pakistan, the Middle East or the eastern Mediterranean.
Sickle cell disorders cause your normally round and flexible blood cells to become stiff and sickle shaped, stopping the blood cells, and the oxygen they carry, from being able to move freely around the body. This can cause pain and other symptoms.
Risk factors for patients with Sickle Cell Disease
Sickle cell disorder affects people in different ways and with variable severity. Some patients experience a lot of severe pain and may require admission to hospital. Others may experience only mild pain. Some people with sickle cell disorders may not experience any symptoms, especially those who are carriers, a term sometimes called sickle cell trait.
Sickle cell crisis can be triggered by
- Dehydration
- Not having your recommended medications and vaccinations
- Being too cold or too hot
- Excessive physical exertion/stress
- Emotional stress and Anxiety
- Surgery
- Pregnancy
- Infections
- Some medications
Complications or risks of having Sickle Cell Disease
There can be some risk associated risk and complications of having sickle cell disorder these could include:
- Infection
- Anaemia
- Kidney damage
- Bone complications
- Stroke
- Acute chest syndrome (ACS)
Signs and Symptoms to be aware of
Patient with sickle cell disorder should be aware of possible signs and symptoms of a crisis. These may include:
- Fatigue (feeling tired or weak)
- Pain in the arms, legs, tummy or chest.
- Jaundice (yellowing of the white of the eyes)
- Paleness of skin or inside the mouth or eyes
- Dizziness
- Headaches
- Symptoms of infection such as a fever
- Abdominal pain
Mild symptoms may be managed at home with the use of pain medication and staying well hydrated.
If you start to develop severe symptoms with a fever of 380C or above, shortness of breath or difficulty in breathing, pain that cannot be controlled with your usual painkillers or abdominal pain then please ensure you contact the haematology assessment unit via the Queen’s Centre acute assessment unit at the Queen’s Centre at Castle Hill on Tel: 01482 468888 (option 4) or if not an emergency then the haemostasis nursing team can be contacted on Tel: 01482 461403 to get some advice. Please leave your name, contact number and hospital number to help the team find your record and call you back. You will initially be triaged over the telephone prior to any possible admission. Our acute assessment unit is also available out of hours on Tel: 01482 468888.
If you think your condition may be life threatening i.e. if you are experiencing severe chest pain, symptoms of a stroke such as loss of use of arm or leg collapse or unconsciousness please call, or ask a friend or relative to call, 999 and show your Patient Card to the ambulance crew. If required A&E will contact the on-call haematologist for advice.
Treatment
You may be able to manage a simple painful sickle cell crisis at home by taking painkillers, resting, drinking fluids and keeping warm.
However, if the pain becomes worse you may need stronger painkillers in hospital. We can help with pain control in the hospital and also treat the underlying cause (trigger) and any complications relating to your condition. Sometimes a crisis may not be particularly painful or more importantly you may feel unwell from the start.
If you are unwell even if you have no pain, you should always contact us as you may need to come into hospital. We may also suggest other ways of managing your condition with preventative treatments. We usually recommend this if the frequency of sickle cell crises increases or if an episode was particularly severe.
Treatment options could include starting a tablet medicine called hydroxycarbamide or a long-term blood transfusion programme. Some people have had a bone marrow transplant that has cured their sickle cell disorder, however, this is often not the right treatment for all people.
It may also be recommended that you take regular prophylactic antibiotics to help prevent infections. The first choice of antibiotic is penicillin V. In order for preventative antibiotics to be effective, it is recommended that you take them every day. Some people forget or decide only to take the antibiotics when they are ill, which is not advisable. Please ensure that you do not run out – always arrange to get a new supply from your doctor before you run out completely.
It is also recommended that patients with sickle cell disorders receive the following vaccinations:
- Pneumococcal vaccine: You should receive this every five years. Your immunity might be checked in the sickle cell clinic when you attend for annual review, and a booster dose advised if your body has not developed immunity.
- Seasonal flu vaccine: You are advised to get this every year from your GP
- Hepatitis B vaccine: This is advised for all patients who are on a blood transfusion programme. Your immunity will be checked in the sickle cell clinic during your annual review, and a booster dose may be advised. This may be given in the day unit or clinic or arranged with your GP. Your doctor will advise you on this.
You may be advised to have other vaccines, such as meningococcal ACWY and B or Haemophilus Influenzae type B if you have not had them before.
What to do in an emergency?
If you have a non-urgent medical problem or a medical problem unrelated to your sickle cell disorder, for example a rash or a twisted ankle, you can contact your GP, go to your local walk-in centre or A&E. If necessary, they can discuss your problem with us.
What can you do to stay well?
To help you stay fit and well you could try incorporating some of these into your lifestyle:
- Maintain good fluid intake by drinking 2/3 litres of water daily
- Eat a healthy diet
- Exercise
- Make sure any infections are treated quickly
- Maintain a good balance of nutrition and activity
- Ensure your vaccinations are up to date
- Avoid smoking
- Avoid extreme temperatures, wrap up warm when its really cold
Appointments
Once a referral has been received by the Haematology Department, we will organise for a face-to-face appointment to be made in our haematology outpatients’ clinic. Following on from your first appointment you will be referred over to the Haematology Consultant at St James’s University Hospital in Leeds. All patients are registered both at Leeds and here at Hull. The team in Leeds will register you on the National Haemoglobinopathy Register (NHR) and conduct yearly follow up reviews.
The Sickle cell and red cell disorder service in Leeds can offer you help and support with various services including psychological support and welfare rights. They can be contacted on Tel: 0113 2068236 or via the webpage:
Here at Hull, you will be monitored regularly (normally every 3 to 4 months) by the haematology clinical team. On each visit to the hospital, we will check your blood counts to ensure you remain stable. If you are unable to attend your appointment to need to contact the appointments team to rebook.
National Haemoglobinopathy Registry (NHR)
The NHR is a database of patients with sickle cell disorder (mainly SCD and Thalassaemia) living in the UK. This database collect date from haemoglobinopathy centres, as required by the department of health and social care. The aim of the registry is to improve patient care for these conditions. Your sickle cell disorder team will speak to you about this in detail and offer you an information leaflet.
Contact Us
Haematology Department
Queen’s Centre for oncology and haematology
Queen’s Centre
Castle Hill Hospital
Castle Road
Cottingham
HU16 5JZ
Haematology Appointment Line Tel: 01482 468888 Option 1
Haemostasis nursing team – contact number Tel: 01482 461403
Useful links
https://www.sicklecellsociety.org/
https://www.nhs.uk/conditions/sickle-cell-disease/
https://nhr.mdsas.com/index.php/nhr-system-access-2/
https://www.hey.nhs.uk/feedback/
General Advice and Consent
Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.
Consent to treatment
Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.
The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:
- you must be able to give your consent
- you must be given enough information to enable you to make a decision
- you must be acting under your own free will and not under the strong influence of another person
Information about you
We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.
We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.
Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.
If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.