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17th July 2012
Jenny Neal, Sickle Cell and Thalassaemia Counsellor
Inherited blood conditions such as Sickle Cell and Thalassaemia can have a devastating impact on people’s lives, but help is available here in Northamptonshire.
July is Sickle Cell Awareness Month and in Northamptonshire, the two clinical commissioning groups (CCGs), NHS Nene Clinical Commissioning Group (Nene CCG) and NHS Corby Clinical Commissioning Group (Corby CCG), recently commissioned a full time counselling service for patients with Sickle Cell and Thalassaemia, alongside NHS Corby Clinical Commissioning Group.
Both Sickle Cell and Thalassaemia are inherited diseases or haemoglobinopathies, which arise when both parents are “carriers” of the abnormal gene. The combination of each abnormal gene from the father and mother has a one in four chance of resulting in the birth of an affected child in every pregnancy. There is also a two in four chance the baby will be a carrier, which should have no impact on health, and a one in four chance that the newborn’s blood will be completely normal.
Jenny Neal, Sickle Cell and Thalassaemia Counsellor said: “There are around 6 cases babies affected with a significant haemoglobin disorder such as Sickle Cell disease every year in Northamptonshire. Once a patient is diagnosed with one of the condition, I visit them to talk them through the diagnosis and develop a care plan with them to help them manage their condition as best as possible. Babies are usually diagnosed by the new born blood spot screening test.
“The counselling service complements the National Sickle Cell and Thalassaemia Screening Programme, which is offered to all pregnant women and partners of identified carrier mothers. I work at both Northampton General Hospital NHS Trust and Kettering General Hospital NHS Foundation Trust. As part of the service, I offer specialist advice and support to all pregnant women offered screening for Sickle Cell, Thalassaemia and other significant haemoglobin variants.
“Many people with haemoglobin disorders have to be hospitalised for pain management, transfusions, and surgery to deal with complications such as enlarged spleens and gall stones. However, evidence shows that more proactive patient management through support to identify and avoid known ‘triggers’ of illness and sickle crisis could reduce the need for the more complicated hospital management.
“It is important that fathers get themselves tested for both Sickle Cell and Thalassaemia and I am working with my community midwife colleagues to encourage and promote this. We can also offer sibling testing if one child has either of these disorders. For mothers to be, the best time to screen is at around ten weeks of pregnancy but people can be tested at any time.
“I also aim to educate health professionals and the wider community about the conditions and how best to manage them and to ensure any families new to the area are aware of the available services. I have recently given training to Health Visitors and Midwives on looking after babies and pregnant mothers with these conditions. I am very happy to hear from others who want to know more about both Sickle Cell and Thalassaemia.
“The service also aims to encourage awareness and the testing of residents in the community to enable ‘carriers’ to make informed decisions about their future reproductive options early. Linking to both the newborn and antenatal screening programmes, the service also provides support to those diagnosed to have regular health checks.”
The Northamptonshire service has been developed in line with recommendations from the East Midlands Specialised Commissioning Group and the National Haemoglobinopathies Project, and it is estimated that improvements in the coordination and delivery of care could reduce up to 5% of inpatient non-elective admissions related to haemoglobinopathies.
More information on Sickle Cell and Thalassaemia
Sickle Cell disease is the result of an inherited abnormality in the red blood cells, resulting in blood cells that ‘sickle’ and change shape irreversibly when they are low in oxygen. The Sickled red cells obstruct the flow of oxygen-bearing blood to the body’s major joints and internal organs, and when this occurs , the individual –commonly referred to as a ‘sickler’ – is said to be in ‘crisis’. The condition is most prevalent amongst black Caribbean, black African and black British people.
Thalassaemia In Thalassaemia, the white cells and platelets are normal, but the red cells are small and too few in number, leading to a form of anaemia. This results in individuals with the severe form of thalassaemia getting tired very easily, and needing frequent blood transfusions to remain healthy.