Screening for sickle cell and beta thalassaemia

Sources of support

Many people turned to their partner and their family as their first source of support. As one woman said, 'My Mum, she's been my rock. She calls me two, three times a day… If I didn't have a religion, or I didn't have a supportive family, then maybe I would have just ended the pregnancy.' (See also 'Values and religious beliefs' for more discussion of the strength many people get from religion).

But not everyone found it easy to draw on family support. Sometimes this might be simply at a practical level. Some people had arrived fairly recently in the UK, and had few family members here. Several talked about telephoning or e-mailing family back home, but sometimes found it hard to explain their concerns.

A Portuguese couple described their experiences of arriving as new immigrants and finding themselves homeless and isolated when she was already pregnant. Discovering their baby was a sickle cell carrier and trying to understand the consequences was for them one more hurdle to add to their existing difficulties with language, housing, employment and understanding the system. 

One woman had to rely on her parents for support in caring for her son with beta thalassaemia major, because it took several years to sort out her husband's entry visa to the UK from Bangladesh. She drew support from her local specialist nurse and other parents she met at a support group, but it was a lonely time. The couple feel the immigration authorities need to be more sensitive to the needs of families with a sick child.

Although most people felt strongly that family support had been important to them, a few wanted to keep things to themselves. For example, one woman said, 'You don't know to what extent you'd have wanted people rushing round to see how you were anyhow, because it is a very personal thing. Another woman whose daughter has sickle cell anaemia commented that sometimes family members said the wrong thing. She and her partner found it difficult to support each other as well.

For her, professional support from her local specialist counsellors and the Sickle Cell Society had been hugely important and had helped her accept that it is not just the child who needs support but also the parent. She found it easier to talk one-to-one than in a big support group.

Many people echoed this praise for specialist counsellors, and felt the counsellors went out of their way to help. It was important to people not only that counsellors were well-informed and skilled in explaining complex information at the time of screening and diagnosis, but also that they could be phoned to answer queries and provide reassurance in the longer term. Being able to get quick advice was especially important for parents of children affected by sickle cell disorders or beta thalassaemia major when they are learning how to care for their child.

Some people were also very pleased that the counsellor could speak to them in their own language, including a Mirpuri-speaking mother whose counsellor came with her to every CVS appointment. For others (including a Thai speaker and a Portuguese speaker) communication had to be in English and it sometimes took them a while to understand. 

A number of people found it very helpful to attend support groups run by counsellors at their local sickle cell and thalassaemia centre. Just being able to talk to other mothers was comforting, and some people had also developed their own informal networks with other mothers. People attending support groups also found it helpful to have invited speakers, information videos and talks from the counsellors. 

The bond established with counsellors can be very strong, and one woman said it was difficult to adapt to a new counsellor when the one who had supported the family at the time of her brother's death had left. They were not very happy as a family with the advice given.

However such criticism was very rare. The great majority of people felt well supported and thought it was good to know there was someone there for them, even if they did not feel they needed help at that moment. 

One at-risk couple were pleased that the counsellor respected their wish not to have any diagnostic testing. She called them after they had made this decision, and the mother said, “She was very nice about it, and she was like, you know, people's faith had actually pulled them through. She respects my view and she wishes me good luck.” 

Last reviewed September 2015.

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