Why Sickle Cell matters

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2017 National Women's Conference
13 October 2016

Sickle cell disease is the name for a group of inherited blood disorder that affect the red blood cells. The most serious type is called sickle cell anaemia. People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they don’t live as long as healthy blood cells and they can become stuck in blood vessels. Sickle haemoglobin gives up its oxygen to the tissues which stick together to form long rods inside the red blood cells making these rigid and ‘sickle’ shaped. By comparison, normal blood cells can bend and flex easily. Whilst Sickle Cell is more commonly associated with people with an African or Caribbean family background in the UK, awareness needs to be raised about how sickle cell disease also affects people of nationalities such as, South American, Middle Eastern, Easter Mediterranean and Asian origin.

Conference notes that whilst most people have heard of sickle cell disease, the majority of those will not really understand the disease and how it impacts on the lives of those with the disease. The UK Sickle Cell Society was commissioned in 2009 to develop a programme of education and outreach work on behalf of the NHS as it was clear that there was a lack of awareness of sickle cell and lots of stigma around the condition, particularly in communities who were most at risk of inheriting the disease.

Sometimes people born with sickle cell disease experience problems from early childhood, although most children have few symptoms and lead normal lives most of the time. The main symptoms of the disease are painful episodes called sickle cell ‘crisis’, which can be very severe and can last up to a week. Some children can also experience delayed growth, are at increased risk of infection and anaemia which can cause tiredness and shortness of breath.

Women with sickle cell need to be considered as being at high risk during pregnancy. Being pregnant can result in a worsening of their chronic illness and the sickle cell illness can exacerbate complications during pregnancy and in extreme cases this can lead to loss of the foetus and/or the mother. Women with sickle cell are more prone to pain episodes during pregnancy, especially in the last few months of pregnancy. Pregnancy creates intense demands on a woman’s body and the normal physiological changes of pregnancy and common complications such as anaemia can easily make the ‘sickling’ of the red blood cells worse. If the blood vessels become blocked by ‘sickled’ cells, body tissues may become deprived of oxygen and die. Even minor areas of damage in the placenta may reduce the amount of oxygen and nutrients available for the baby’s growth in the womb. Other complications for women during pregnancy can include; urinary tract infection, pneumonia, gallbladder problem, gallstones, heart enlargement and heart failure due to anaemia. During pregnancy women are at higher risk of strokes, pulmonary complications, higher number of ‘painful crisis’ and infections. Women with sickle cell are also 25% more likely to miscarry, 13% more likely to be born premature. According to the ‘Brent Sickle Cell and Thalassaemia Centre’, the maternal mortality rate in the UK among women with sickle cell disease is 5 per 1000 births compared to 0.06 per 1000 births in women without sickle cell disease.

Research has furthered the understanding of the impact of the presence of sickle cell disease in children. Caring for children with sickle cell can put a strain on all the family but conference notes that because women still bear most of the responsibility for family caring, this will have a disproportionate impact on the working life of the mother, especially considering that one or more children in one family might have sickle cell and need care during painful episodes.

Conference congratulates the national women’s committee for the information on sickle cell disease and women in the UNSION Women’s Health Packs. Conference believes that UNISON national women’s committee could play a further vital role in raising awareness among our members of the disease and the impact on women during pregnancy and with regards to the implications arising from time off work for caring responsibilities.

Conference instructs the national women’s committee to work with the National Black Members SOG, other relevant UNISON committees and/or departments and where appropriate external agencies such as the UK Sickle Cell Society, the UK National Health Service Sickle Cell and Thalassaemia Screening Programme to;

1) Update the excellent UNISON Pregnancy Diary to include a section of advice and guidance for pregnant women with Sickle Cell disease

2) Develop information session and resources that can be used in branches or regions to run sessions with women members to raise awareness and provide support for women members.

3) Work with regional women’s committees to encourage local organisation of information sessions for women members that can be used for example, during women’s history month