Woman Whose Father Has Polycystic Kidney Disease Asking If She Should Be Checked — Free SCA Practice Case

Character Overview: You are Esme Haddad, a 31 year old copywriter at a marketing agency, taking this video call on your laptop at your kitchen table. You live with your girlfriend Jodie, a physiotherapist, in a rented flat. You are bright and organised and hate not knowing where you stand. Today you sound tired and a little wound up, and talk quickly when anxious.

Your dad, Karim, is 55. He ran a Lebanese bakery for twenty years and had to hand it over when his kidneys failed. He never had insurance and money at home has been tight since. His consultant told him his children should think about being checked, and your mum passed this on to you and your brother.

You are part way through an online application for life insurance and critical illness cover of about £150,000. You have not sent it. You have had five or six headaches this month; otherwise you feel well. You call your dad's condition "Dad's kidney condition" or "the cysts". You do not volunteer your beliefs, fears or the dilemma about the form until the doctor asks.

Opening Sentence: "Hi, thanks for seeing me. So, my dad's just started dialysis for his kidney condition, and his consultant told him me and my brother should think about getting checked. I honestly don't know whether I should, or what it even involves. And I've had a few headaches lately, which isn't helping my nerves."

History if Asked (Data Gathering Phase)

• ●Her dad (if asked how he found out and how he is now): "He was thirty six. He got a kick in the side playing five a side, then there was blood in his wee, and the scan showed both kidneys full of cysts. He started dialysis five weeks ago, and they're testing whether he can go on the transplant list. I don't think he's had a gene test."
• ●How it has been seeing him (if asked how she is coping): Her voice catches. "I sat with him at the first session. He looked so small in that big chair, and he kept telling me to go home."
• ●Wider family (if asked about other relatives): "Dad's mum, my teta, died at sixty three. Everyone says it was her kidneys, but nobody had a name for it. Dad's sister, Auntie Rima, had a scan in her forties and she's clear. My brother Sami's twenty nine. He says he doesn't want to know, because what's the point if they can't stop it. Mum's side is fine."
• ●Bleeds on the brain or sudden deaths (if asked): "No, not that I've heard of."
• ●The headaches: "About five or six in the last month. A tight band across my forehead, both sides, late afternoon when I've been on my laptop all day, building slowly. Maybe five out of ten at worst. Two paracetamol takes the edge off, or it's gone once I've slept. Paracetamol on maybe four days this month."
• ●What has changed (if asked about sleep, stress, caffeine or screens): "Everything, really. I'm not sleeping, I lie there thinking about Dad. I'm catching up on work late at night, skipping lunch and on about five coffees a day, double what I used to have. And we've got a big campaign next week."
• ●The insurance application (if asked): "Life insurance and critical illness together, online. I ticked yes to a parent with kidney disease. The next page asks if I'm waiting for any tests or results, and I stopped. I haven't sent it."
• ●Why she wants cover (if asked): "Because of Dad. He never had anything. When he had to stop work the money just stopped, and Mum's been holding it all together. I don't want to end up like that."

Ideas, Concerns, Expectations

Gating note: Esme does not raise any of the following herself. Each part comes out only when the doctor asks what she thinks is going on, what is worrying her, or what she was hoping for.

• ●Ideas: She half believes the condition mostly passes down to the men in a family, because it went from her grandmother to her dad and not her auntie. She also thinks the headaches might be her blood pressure going up. If asked: "I sort of thought it was more of a men's thing? It went to Dad and not Auntie Rima. And I read that blood pressure's usually the first thing to go, so I wondered if that's the headaches."
• ●Concerns: She fears the headaches could be a bleed on the brain, and that if she is checked and it shows something nobody will insure her and she will end up like her dad. If asked: "I read that bleeds on the brain are linked to it, and that's properly scared me. And if I get checked and it's bad news, I'll never get covered, and I'll be exactly where Dad is."
• ●Expectations: She wants to be told whether to get checked and whether to send the form first. If asked: "I suppose I want you to just tell me what to do. Do I get scanned, or do I send the form off first?"

If Asked: Medical History and Medications

Gating note: Esme answers each of these plainly when the doctor asks about it.

• ●Health and medicines: "I'm hardly ever ill. Just paracetamol, no ibuprofen, I wasn't sure it was okay with Dad's thing. I've got the copper coil. No allergies. Not pregnant, and children are a few years off."
• ●Blood pressure and kidney tests: "I think the last time anyone checked my blood pressure was when I joined the practice, about four years ago. I haven't got a machine. I've never had my kidneys tested, as far as I know."

Social History and Lifestyle Impact

Gating note: Esme mentions this naturally as the conversation turns to her work, her family and how she has been coping.

• ●Work and home: In the office Mondays and Thursdays. "Work's the only thing that feels normal at the moment."
• ●Lifestyle and mood: "I'm shattered, and Jodie says I'm snappy. I'm a bit teary at night, but I'm not depressed." Never smoked, a couple of glasses of wine at weekends, no drugs.

If Asked: Associated Symptoms

Gating note: Esme answers these briefly, only when asked.

• ●If asked about a sudden or explosive headache, waking with it, worse on coughing, straining or lying down, being sick, light or noise bothering her, vision changes, weakness, numbness, speech problems, fever, a stiff neck or a head injury: "No, nothing like that. They creep up on me."
• ●If asked about blood in her urine, pain in her sides or back, passing more urine, chest pain, palpitations, breathlessness or nosebleeds: "No, never." One water infection at nineteen, nothing since.

Responses to Management (The Negotiation Phase)

• ●If the doctor explains that each child has a 1 in 2 chance, son or daughter, that it does not skip generations, or that if she is clear she cannot pass it on:
  • ●Reaction: Surprised. "So it's not a men's thing at all? Then how come Auntie Rima got away with it?" She understands quickly if it is compared to a coin toss. Once her chance is explained she asks once: "Dad was fifty five when he started on the machine. If I have got it, is that roughly my timeline too?"
• ●If the doctor explains the headaches, or suggests a blood pressure check, kidney tests or painkillers:
  • ●Reaction: Relieved but checking. "So it's not my blood pressure? How would you even know without checking it?" If told high blood pressure usually causes no symptoms: "So I could have it and feel fine? That's worse, in a way." If normal results are mentioned: "If those come back normal, does that mean I haven't got it?" If ibuprofen is suggested: "Is that okay for my kidneys?"
• ●If the doctor discusses a scan, waiting, referral to the genetics or kidney team, or a gene test:
  • ●Reaction: Hesitant. "Today? I haven't even decided if I want to know yet. What happens with the insurance if it shows something?" If told she need not decide today: "So it's not dangerous to wait?" If told a clear scan may not rule it out: "So I might still have it?" Once the options are set out she asks: "If you were me, what would you do?"
• ●If the doctor explains how insurers treat family history, genetic tests and scans, or suggests leaving her dad's condition off the form:
  • ●Reaction: Deflated, then checking. "So I'm already marked down because of Dad, whatever I do?" If told she could arrange cover first and decide about screening afterwards: "And that's allowed? I'm not cheating anyone?" If told to leave anything off: "Is that allowed, though?"
• ●Once the doctor suggests any check, test or scan, if she has not already asked, she asks once about her record:
  • ●Reaction: Anxious, voice dropping. "Would that go on my record? Could it be kept off, just until the insurance is sorted?" If told the record has to be accurate: embarrassed. "No, of course. Sorry, I shouldn't have asked. I'm just panicking about ending up like Dad." She settles if the doctor is kind and explains what she can control.
• ●If the doctor gives vague safety netting, or raises her brother, giving a kidney to her dad, or asks her to examine herself on camera:
  • ●Reaction: On "come back if it gets worse": "Worse how? I don't want to ring 999 over a normal headache, but I don't want to sit at home with a bleed either. What would a bad one actually feel like?" Once a thunderclap headache is described: "So like being hit round the head out of nowhere. Not the slow ones I'm getting." She declines to examine herself: "I wouldn't know what I was feeling for. I can come in if you need to check anything."