Sickle Cell Disorder is the most common genetic condition in the UK with more than 15,000 people having the condition. Despite this, not many people are aware of the condition and its symptoms.
In recognition of Sickle Cell Awareness Day (Saturday 19 June), the Care Group joins efforts to raise awareness of the condition by sharing how our Health Visiting team supports families in Tower Hamlets who are dealing with Sickle Cell.
What do we need to know about Sickle Cell?
Sickle Cell disease is inherited from both parents while the sickle cell trait is inherited from just one parent. The condition is not contagious, however, the only possible cure for the disorder is a bone marrow transplant but this is only possible for a limited number of people who have a suitable donor.
As a genetic disease, anyone can have it although it predominantly affects people from African and Caribbean backgrounds. In the UK, approximately 300 babies are born with Sickle Cell each year. Read more about Sickle Cell here.
What support do pregnant women get to detect the disease?
The Antenatal and Newborn Screening Programme across the UK for pregnant women includes checks for Sickle Cell. Pregnant women have tests that aim to detect the Sickle Cell trait and to see if they are positive to it. The partner will also be offered a blood test as the chances of passing on the trait and condition are increased if both parents are positive.
One of the Care Group's Health Visiting clinical leads, Lola Oloko said: "Expectant women in Tower Hamlets are supported by Heath Visitors who work closely with the Barts Health Community and Screening Haemoglobinopathy Clinical and the Midwifery antenatal and newborn screening programme coordinators.
"If it is discovered that a baby has sickle cell disease the child and family begin to receive support and treatment from the Haematology team, and the Haematology team gives the results, and the child is referred to the Haematology Team. However, if a child is a carrier support is given if parents should they want further counselling but all families provided the booklet or link to the Public Health England.
"Health Visitors play a big role in supporting the family by offering a detailed care plan as the impact of having a child with Sickle Cell disease can have a huge effect on the family dynamics, including the parents' relationship and the needs of the other children, as the case may be."
How do we detect that a child has Sickle Cell?
All newborn babies are offered the Newborn Screening blood test (also known as the heel prick test) which is carried out by a midwife when a baby is five days old in the UK. The test is also offered to babies who move to the UK up to when they turn one.
Health Visitor Jenny Gilmour said: "This is so that, along with other inherited and treatable diseases, the Sickle Cell disorder or trait can be identified, and treatment offered promptly if the baby gets an infection. Referral for specialist management can also be arranged if required. Health Visitors and Specialist Midwives can support new parents if their baby is diagnosed at any point with the Sickle Cell disease or sickle cell trait.
Awareness of Sickle Cell and the importance of training
Ensuring families dealing with Sickle Cell get the support they need is vital. Lola Oloko said: "Health Visitors routinely follow up and check with mothers that the heel prick blood spot check is carried out by the midwife. The result of the test is received at the six weeks Health Visiting postnatal review. We follow up if the results don't come through."
Regarding Health Visiting training on Sickle Cell, Lola said: "In usual circumstances, Health Visitors would have a yearly training session on all blood spot screenings, one of which is to detect Sickle Cell, however, due to the COVID-19 pandemic and lockdown, this session will be rearranged."
To learn more facts about Sickle Cell watch the video: 10 Facts about Sickle Cell Disorder (World Sickle Cell Day 2020) - YouTube
Visit the Health Visiting page on the GP Care Group website.