Cases/Learning Disability

Breast Lump in a Woman with a Learning Disability — Free SCA Practice Case

Support worker who found a breast lump in a woman with a learning disability

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12:00

Golden Minute

Initial Introduction

•Introduce yourself

•Ask an open question — "How can I help you today?"

•Listen — don't interrupt

•Catch early cues

Data Gathering

History, ICE & Diagnosis

Clinical Management

Diagnosis, Plan & Decisions

Safety Net

Follow-up & Close

12:00

Golden Minute

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Materials for Candidate

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Patient Profile

Full Name

Lorraine Pickering

Age

52 years

Consultation Type

Telephone

Situation

Telephone Consultation.

Reason for Encounter

"Support worker has found a lump in Lorraine's breast and would like advice. Lorraine becomes very distressed in clinical settings."

Medical Records

●PMH: Down's syndrome, moderate learning disability. Hypothyroidism.
●Medications: Levothyroxine 75 micrograms. NKDA.
●Social: Supported living. Sister Gillian holds a registered health and welfare lasting power of attorney (made 8 years ago). Consent recorded to share information with Gillian and staff.

Recent Notes

●3 months ago: Breast screening invitation, no response.
●4 years ago: Lacked capacity to consent to cataract surgery. Best interests decision, Gillian consulted.

Patient Script

For the friend playing the patient role

Character Overview: You are Tomos Rees, a 29 year old support worker at Linden Court, a shared house for four adults with learning disabilities. You are phoning about Lorraine Pickering, a 52 year old woman with Down's syndrome who has lived there for six years. You are fond of her. This morning you helped her wash because she has had a cold, and you found a lump in her right breast. Your manager, Carol, is away until next week. Lorraine's sister Gillian is her attorney for health and welfare. You have not rung Gillian yet because you wanted to talk to the doctor first, and you are nervous about how she will take it. You are warm, a little out of your depth and apologetic, and you speak quickly when worried. You use everyday words and never the word "cancer". You say "something serious" or "something nasty". You are Tomos, not Lorraine, who is not on the call. If asked to feel the lump again or look under her arm, you decline: she is private and you are not trained.

Opening Sentence: "Hello, doctor, it's Tomos Rees from Linden Court, I'm one of the support workers for Lorraine Pickering. I was helping her to wash this morning and I found a lump in her right breast. I don't really know what to do. She gets so frightened at doctors and hospitals, and I'm worried about making things worse for her."

History if Asked (Data Gathering Phase)

Gating note: Tomos answers what he is asked, in short everyday phrases, and does not volunteer more than the question needs. He cannot give detail he does not have and says so plainly.

●Where it is and what it feels like: "It's on her right side, up and towards the outside, more towards her armpit than her nipple. It's a firm bit, about the size of a big grape. It's not squishy. I only touched it for a second."
●Pain, skin and nipple (if asked): "When I pressed on it she said 'ow, sore, no touch' and pulled away. The skin looks the same as the other side, no redness or dimpling that I saw."
●How long it has been there (if asked): "I've no idea. She does most of her own washing if we prompt her. The last proper wash with staff was about three weeks ago and nobody wrote anything down. I noticed it this morning. I haven't looked in her armpit and I'd rather not."
●Periods, screening and family history (if asked): "Her periods stopped about two years ago. She's not on HRT or the pill, just her thyroid tablet. She got a letter about breast screening a few months ago. Gillian said Lorraine wouldn't cope with the machine, so we never booked it. Family history, I don't know, that's one for Gillian. Their mum died about four years ago."
●General health and weight (if asked): "She's eating normally and her clothes fit the same. She's got a cold and she's a bit tired, but nothing else."
●How Lorraine reacted and what she knows (if asked): "When I said I might ring the doctor she said 'no doctor, no needle'. I haven't told her what I found."
●How she talks and decides (if asked): "She talks in short sentences. She can tell you what she wants for tea, what to wear, who she wants to sit with. If you go slowly and show her pictures she understands simple things. We've got an Easy Read book about going to the doctors. If it's anything to do with doctors she goes quiet or says no. I've read in her file Gillian signed for her eye operation."
●What went badly before (if asked): "The A and E two years ago, when she hurt her wrist. They waited four hours in a noisy corridor, Lorraine screamed and hid under the trolley, and they only got the scan with Gillian standing right beside her. Nobody held her down, thank goodness. She was upset for days."
●What helped before (if asked about her eye operation): "Her eyes were different. Gillian stayed the whole time. She went in the day before to see the room and meet the nurse, she took her blue blanket, and they put her first on the list."
●Who else knows, and Gillian (if asked): "Gillian's her sister and she's got the power of attorney for her health. I haven't told her yet. Carol's away, so it's just me deciding who to ring. Gillian lives about forty minutes away and works at a school, so she's usually free after four. After the A and E she said 'no more hospitals for Lorraine', but I don't know if she meant for everything. Lorraine's file says she's fine with Gillian and us knowing about her health. The house phone is in the office and half the time nobody picks up, so they should ring my work mobile."

Ideas, Concerns, Expectations

Gating note: Tomos does not raise any of this himself. Each part comes out only when the doctor asks what he thinks the lump might be, what is worrying him, or what he was hoping for from the call.

●Ideas: He wonders if it is a cyst. Someone at another house run by the charity told him women with Down's syndrome hardly ever get anything serious in their breasts, and he half hoped that was true. "A cyst maybe? One of the girls at our other house said women like Lorraine hardly ever get anything serious there, so I wondered if I was making a fuss over nothing."
●Concerns: His main worry is putting Lorraine through the hospital and losing her trust. "Last time she was in bits for days. I don't want her to think we've tricked her into it." If the doctor explores further, he feels responsible. "I keep thinking I've started something. If I hadn't touched her... or if somebody had noticed sooner. And if it is something nasty and we leave it, that's on me as well."
●Expectations: He hoped to be told what to keep an eye on while they got Lorraine used to the idea over a few weeks. "I wasn't expecting hospital straight away."

If Asked: Medical History and Medications

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

●Health and medicines: "She's got Down's syndrome and an underactive thyroid. Just her thyroid tablet in the morning, nothing else. She had cataracts done a few years back under a general anaesthetic. No allergies that we know of. She's never smoked."

Social History and Lifestyle Impact

●Home and daily life: Lorraine moved to Linden Court six years ago when her mum had a stroke. She goes to an art group on Tuesdays and Thursdays.
●Impact now: "Since this morning she's gone quiet. She wouldn't eat her toast and she's been sitting by the window."
●Gillian: "She's lovely, but very protective of Lorraine, understandably."

If Asked: Associated Symptoms

●Negatives: No weight loss or appetite change. No breathlessness or chest pain, just the cold. No bone pain, she is walking as normal. No fever. No other lumps that he knows of, but he hasn't looked. No knock to the chest. She has been keeping her hand on the lump this afternoon.

Responses to Management (The Negotiation Phase)

●
If the doctor says the lump needs an urgent referral to the hospital:
- ●Reaction: Anxious and bargaining. "Urgent? Couldn't we give it a few weeks and get her used to the idea first?" He softens if the doctor acknowledges how hard the last visit was and explains why this cannot wait. "No, I get that. I just don't want her to think we've tricked her. How long would it take?"
●
If the doctor explains who decides (capacity, Gillian's power of attorney), or says they will phone Gillian:
- ●Reaction: Confused and worried. "So does Gillian get to say no? Because I think she might. If I can't get hold of her, can I just take Lorraine myself?" If asked what happens if Gillian says no: "I'd hate it to end in an argument. She only wants what's best for Lorraine." On the doctor ringing her: "Would you ring her? She'll take it better from a doctor." If asked to ring himself: "I can do that after four."
●
If the doctor asks to speak to Lorraine, offers to see her, asks Tomos to examine her again, or mentions screening:
- ●Reaction: Apologetic. "She's said 'no doctor' and gone to her room. She might do better in person, with the picture book, if I'm sitting next to her. At the surgery it'd have to be the last appointment of the day. Would you have to touch it?" He declines to examine her. "I'd rather not. I'm not trained." On screening: "Isn't that what the letter was about? Would that be easier than the hospital?"
●
If the doctor describes the breast clinic tests, or offers ways to prepare Lorraine:
- ●Reaction: Worried, then eager. "Will they use needles? Will they make her go in on her own, without me or Gillian in the room?" On preparing: "We've got photos from before her eye operation that helped. Do I tell her now or nearer the time? I don't know what to say to her."
●
If the doctor gives vague safety netting, or says it is probably nothing:
- ●Reaction: Pressing. "Worse how? What am I looking for? And who do I ring if the hospital doesn't ring us? Can they ring my work mobile?" And: "So it's probably nothing? I don't want to tell Gillian it's something serious and then it's a fuss." If told most lumps are harmless but it must be checked quickly: "Okay. What do I say to Gillian?"
●
If the doctor says he did the right thing, asks how he is feeling, or agrees a plan with clear roles:
- ●Reaction: Emotional. "Thanks. I keep thinking, if I hadn't touched it, or if somebody had noticed sooner. Is it my fault if it's something bad?" Given a clear plan he is relieved. "Right, so you ring Gillian, I tell Lorraine the way we always do, and the hospital rings my work mobile. I can do that. Thank you for not just telling me to wait."

Mark Scheme

Domain 1: Data Gathering and Diagnosis

0 / 14 indicators checked+0−0

Positive (0/7)

Negative (0/7)

Domain 2: Clinical Management and Medical Complexity

0 / 22 indicators checked+0−0

Positive (0/11)

Negative (0/11)

Domain 3: Relating to Others

0 / 14 indicators checked+0−0

Positive (0/7)

Negative (0/7)

Clinical Learning Points

The Problem and the Model Plan

●A new breast lump in a 52 year old woman is reported by a support worker, not by her. Breast cancer is common, a lump is the commonest presentation, and most lumps are harmless, but only assessment can tell. A carer's report is enough to act on.
●Model plan: take the history from Tomos (position, size, firmness, tenderness, skin and nipple changes, duration, menopausal status, hormones, screening, family history, general health), decline to ask him to examine, make an urgent suspected cancer pathway referral to the breast clinic, speak to Gillian, support Lorraine to decide for herself, build reasonable adjustments into the referral, prepare Lorraine in parallel, and safety net with a contact route that works.
●Acceptable alternative: see her in person within about two working days, at the surgery with adjustments or at Linden Court, and refer straight after. Watchful waiting, a routine referral, waiting for her to be calmer, or redirecting to screening is not acceptable.

What the Guideline Says

●NICE NG12 recommends a suspected cancer pathway referral for people aged 30 and over with an unexplained breast lump, with or without pain. Diagnosis or ruling out of cancer is expected within 28 days, and the referral should go within one working day of the decision to refer.
●"Unexplained" means not explained after initial assessment in primary care, so a prompt in person assessment before referring is guideline compliant. Weeks of waiting is not.
●Include any additional support needs in the referral with the person's agreement, and tell the person and carers where they are going, what tests to expect, whether someone can go with them and who to contact if no appointment arrives. Have a plan for people who miss appointments.

Diagnostic Overshadowing and Down's Syndrome

●Diagnostic overshadowing is putting new symptoms down to a learning disability or to fear, and so under investigating them. People with a learning disability have worse health outcomes and die earlier on average.
●Carers sometimes hear that women with Down's syndrome rarely get serious breast problems. Registry studies found overall cancer incidence similar to the general population, with fewer solid tumours overall, but such studies cannot say anything reliable about one woman's lump, and women with Down's syndrome now live longer. No guideline says a lump can be watched. The disability is a reason to give more support to get the assessment done, not to do less.

Symptomatic Referral Is Not Screening

●NHS breast screening invites women from 50 up to their 71st birthday, every three years, for people without symptoms. Once there is a lump the route is a symptomatic referral, not waiting for screening. Families confuse the two, so explain the difference.
●Her missed invitation is a separate matter to revisit afterwards. NHS England publishes an easy guide and accessible letter templates for people with a learning disability.

Mental Capacity Comes First

●The Mental Capacity Act principles: assume capacity, take all practicable steps to help the person decide, an unwise decision is not proof of incapacity, act in best interests if she lacks capacity, and choose the least restrictive option.
●Capacity is specific to the decision and the time. Down's syndrome does not mean she lacks capacity. Her cataract assessment four years ago involved a general anaesthetic and tells you little about agreeing to be looked at for a sore lump. The person asking her to decide makes and records the assessment.
●Support matters as much as assessment: simple concrete language, only the information needed, pictures and her Easy Read book, a calm time and place, someone she trusts beside her, and the effects of deciding either way explained.
●If she has capacity and agrees, her consent is what counts. If she has capacity and declines, that decision stands, though it can be revisited with support.

The Lasting Power of Attorney and Best Interests

●A health and welfare LPA lets an attorney make medical decisions only when the donor cannot make that decision herself, after the professional has assessed capacity. If Lorraine has capacity for this decision, Gillian has no power.
●The attorney must decide in the donor's best interests, and cannot demand treatment that clinicians do not think appropriate. If the team disagrees with Gillian's view of best interests, seek a second opinion and discuss it again, and apply to the Court of Protection only as a last resort.
●Best interests is not a vote or a guess. Consider what Lorraine herself wants and feels, her past experiences and values, the views of Gillian and the staff who know her, and the least restrictive way to reach the goal. Record why. Her fear and distress weigh heavily and must shape how the assessment is done, but they are not a veto.
●An Independent Mental Capacity Advocate is for people with no one appropriate to consult, which is not Lorraine's position. Check what the record holds about the LPA rather than assuming. Support staff such as Tomos have no authority to consent.

Reasonable Adjustments and the Breast Clinic

●
The Equality Act 2010 requires services to remove barriers for disabled people. For this referral ask for the hospital learning disability liaison nurse, a longer and quieter first appointment, as few visits as possible, Gillian or Tomos staying throughout, a visit beforehand to see the room, and Easy Read information. Use what worked for her eye operation.
●
Update her hospital passport, which is out of date. A call from the GP to the unit can help as much as the letter. Preparation runs in parallel with the referral and never delays it.
●
She will usually have an examination, a scan and a needle biopsy, often in one visit, with biopsy results in about one to two weeks.
●
If she cannot cope even after adaptations, options such as sedation can be considered through a best interests process involving Gillian. Restraint is not a plan, nobody should trick her into attending, and do not promise no needles.
●
Be honest without frightening: most people referred do not have cancer, but the lump must be checked quickly. Do not promise it is nothing.

Working With the Support Worker and the Sister

●Tomos knows what Lorraine said and will do much of the preparation. He should not be left feeling the decision is his.
●Speak to Gillian directly: she is the attorney and knows the family history. Do not accept Tomos's guess about her view. Her reluctance after the A&E visit was about that experience, and a plan that deals with it may change her view.
●Lorraine agreed that Gillian and staff can be told about her health. Even so, share only what her care needs, and record who was told. Tell Lorraine herself, in simple honest words, at a calm time with someone she trusts.
●Put a number that will be answered on the referral, as hospitals ring the number on the letter and unknown callers go unanswered.

Safety Netting and Follow Up

●Ask Tomos to contact the surgery if there is no appointment after about a week, and have the practice check the referral was received. Plan for a missed appointment before it happens, including who will be contacted and who will rebook.
●Same day contact for a lump growing quickly, a break in the skin, a hot red swollen breast, blood stained nipple discharge, fever or new breathlessness. Contact within a day or two for bone pain, weight loss or new lumps elsewhere.
●Keep supporting Lorraine and her team while she waits.

Common Mistakes in This Station

●Suggesting a few weeks of watching, or treating the lower solid tumour rate in Down's syndrome as reassurance.
●Waiting for Lorraine to be less frightened before referring.
●Pointing to routine screening.
●Assuming she lacks capacity because of Down's syndrome, or never involving her.
●Treating Gillian's power of attorney as a veto, or letting Tomos agree for her.
●Taking Tomos's account of Gillian's wishes as her decision.
●A generic referral with no adjustments.
●Suggesting she is held down, or told it is "just a check up".
●Vague safety netting with no contact number or time frame.

Mapped to the RCGP curriculum topic: Learning Disability.

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