Woman Unsure Whether to Have Down's Syndrome Screening At All — Free SCA Practice Case

Character Overview: You are Rukhsana Mirza, a 37 year old planning officer at the county council, married to Naveed, 39, a supply chain analyst. You are thoughtful, dry and a little tired, and the leaflet and Naveed's links have left you more muddled.

You are ten weeks pregnant after three years of trying. You started IVF two years ago with your own eggs and no cause was ever found. The first transfer failed. The second ended in a miscarriage at 6 weeks, a year ago, which you still find hard to talk about. This is the third transfer. The 7 week scan showed a heartbeat and you have only just started to let yourself believe in it.

At booking last week you said yes to the infection and sickle cell blood tests without a second thought, but told the midwife you were undecided about Down's screening. You rang the surgery because the midwife team only offer call backs and you wanted someone who is not Naveed and is not selling anything to tell you straight what you would be agreeing to.

You do not want a lecture or to be pushed, or for the doctor to decide for you. You want honest, plain answers and half hope to be told it is fine to say no. You do not volunteer your reasons, beliefs or the thing you have not told Naveed until asked.

Opening Sentence: "Hi, thanks for ringing. I'm ten weeks pregnant and the midwife wants me to decide whether to have the Down's screening before my scan. I honestly don't think I want it, because whatever it showed I'd never end this pregnancy, so I can't see the point. But my husband wants every test going, so I thought I'd better talk it through with someone properly."

History if Asked (Data Gathering Phase)

• ●What she has been told and has read: "I've read the leaflet twice. It's all very careful and doesn't say whether I should. I came away knowing less than when I started."
• ●What she thinks the test and a normal result mean: "A normal result means the baby's fine? And the test is to let people decide whether to carry on, mainly, so I thought it wasn't meant for me."
• ●What she thinks happens if she says yes: "Once you say yes to the first bit, they carry on to the next test and the next, and you're on a conveyor belt and can't get off."
• ●Where she is in the NHS pathway: "Booking last week. I said yes to the infection and sickle cell bloods. The scan's in two weeks and the midwife wants my Down's answer before then. Nothing's been done privately."
• ●What her husband wants and the private test: "Everything. The NHS test and the private one as well. He's got a spreadsheet. He's not bullying me, he's frightened, and when he's frightened he researches." The private test: "A few hundred pounds. It covers Down's and other chromosome things, tells you the sex, and Naveed keeps quoting that it's ninety nine per cent accurate. We haven't booked it."
• ●Why Naveed is so keen, if asked: "His best friend Dev's little boy Kiran was born with Down's syndrome and they had no idea beforehand. Naveed was at the hospital that night. Dev says the first weeks were awful because they weren't ready. Naveed never wants to be that unprepared."
• ●What she knows about Down's syndrome, if asked: "Only Kiran. He's three, lovely and funny, and they adore him. But I don't know what it's like day to day, or in twenty years. What would it actually mean for a child?"
• ●Whether she feels free to decide, and whether they have talked about a result: "Yes, he's said it's my decision, but in a way that makes it sound like there's only one sensible answer. We've not talked properly about what we'd do after a result. We keep stepping round it."
• ●How she is coping, if asked: "Anxious all the time. I check for blood every time I go to the loo, after last time. I'm not low, just on edge."

Ideas, Concerns, Expectations

Gating note: Rukhsana does not raise any of these herself. Each part comes out only when the doctor asks what she thinks, what is worrying her, or what she is hoping for. The part about Naveed comes out only when the doctor asks what she thinks he would want, what makes the conversation hard, or how it feels to be stepping round it, and is said quietly.

• ●Ideas: She thinks screening exists mainly so that people can decide whether to end a pregnancy, that a "clear" result means the baby is definitely well, and that saying yes sets off a chain of further tests. She did not know she could choose which conditions to screen for.
• ●Concerns: A higher chance result that turns out to be nothing: weeks of terror when she has only just started to believe in this pregnancy. Being swept along a path she did not choose. "What if it says high chance and then it's fine? I'd have spent weeks in bits for nothing." On Naveed: "I think, if something was wrong, he might not want to carry on. He's never said that. He just says things about Dev like 'I don't know how they cope'. I can't have that conversation. If I never find out, I never have to hear it." She does not want Naveed told what she has said.
• ●Expectations: Plain answers about what each part of the screening would and would not tell her, whether it is really all right to say no, and what happens if she says yes. "I'm hoping you'll say it's fine to say no. But I also want to be told if I'm being daft."

If Asked: Medical History, Medications and Social History

Gating note: Rukhsana answers direct questions in everyday words.

• ●Pregnancy and IVF: "Ten weeks by the clinic's dates. Just tired and a bit sick in the mornings. Three years of trying, then IVF for two, my own eggs, and no reason ever found. One earlier pregnancy, a year ago, ended at six weeks."
• ●Family, conditions, medicines, allergies: "Nothing in the family. My sister's got two boys, both fine. I'm well. Folic acid, vitamin D and the clinic's pessaries. No allergies. No smoking, no drink since the IVF started."
• ●Home and support: Lives with Naveed, no children yet. Her sister and mum are close, but she has not discussed the screening with either.
• ●Why she rang: "The midwife was lovely but she's got ten minutes and a form to fill in. It's all I think about, and Naveed and I have the same conversation on a loop."
• ●Symptoms: No bleeding or pain. Mild morning sickness. Sleeping badly from worrying. No thoughts of self harm. No fear at home: "Naveed would never. He just goes quiet and sends me links."

Responses to Management (The Negotiation Phase)

• ●If the doctor explains what the test involves and that it gives a chance, not a diagnosis:
  • ●Reaction: Relieved at first. "Oh. So it's just a blood test and the neck measurement on the scan I'm having anyway?" Then exasperated: "So even if it comes back fine it isn't a promise, and if it comes back badly it still isn't definite? What's the point?"
• ●If the doctor explains her choices, including declining and changing her mind:
  • ●Reaction: Surprised. "I didn't know I could pick. Could I say no without being marked down as difficult? And I can change my mind if I wobble?" If told the combined test is available until about fourteen weeks: "So I'm not shutting the door."
• ●If the doctor gives a view on whether to screen:
  • ●Reaction: If told there is no point because she would continue: uneasy. "Naveed will say you've just told me what I wanted to hear." If told she should because of her age or her husband: defensive. "Is that because I'm thirty seven? I didn't ring to be told what to do." If told some women who would continue still choose it to prepare: "I hadn't thought of it as separate. But I don't think I could cope with a false alarm."
• ●If the doctor explains higher chance results, what could follow, or private tests:
  • ●Reaction: "How many is most? What are the actual numbers?" She is steadier with a figure and its meaning. On a definite test: "How likely is that one to cause a miscarriage?" On hearing 1 in 200: "That's low, but it's this baby. I'd never risk that. At least I'd know I could say no to that bit." On private tests: "So it's still only screening? Naveed will ask why we shouldn't do both."
• ●If the doctor asks about life with Down's syndrome, how they are deciding, or offers to speak to Naveed:
  • ●Reaction: She listens closely to an honest, balanced answer and is put off by pity or false cheer. On what they would do: hesitant, saying more only if the doctor is gentle. If the doctor suggests they talk first: "I know. I've been avoiding it." If offered a call with Naveed: "Yes, but I'd want to be on the line, and please don't tell him I'm scared about what he might want." If the doctor offers to ring him without her or tell him what she has said: "No, please don't. I'd rather say it myself when I'm ready."
• ●If the doctor sets out her choices without telling her what to do, or gives next steps:
  • ●Reaction: She asks directly: "If it were you, honestly, would you do it?" She respects an honest answer that it depends on her values and gives her a way of working it out, and is frustrated by a flat refusal or a firm instruction. On time: "How long have I got? Who do I tell, and is it a phone call or do I just say at the scan?" On a support charity: "I don't want anyone pushing me one way or the other." Vague advice such as "let us know if you have questions": "Questions to who, though? The midwife only does call backs." Once a plan is agreed: "Can I have the website or the number written down?"