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Elderly parents
Original poster

Life expectancy sent by email - relative

598 replies

BillStickersIsInnocent · 13/04/2023 11:12

Hi, I hope someone can help.

I’m really shocked by this communication but I could well be missing something. A relative received an email after a CT scan saying he had inoperable lung cancer and giving him 2 years to live. 2 weeks later another email saying his scan had been sent to another clinician who has concluded he has 8 months to live.
This feels so cruel, I would have thought these conversations happen face to face or at least over the phone where you can ask questions.
Does anyone else have any experience of this type of communication?

OP posts:
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FormerlyPathologicallyHappy · 13/04/2023 12:51

Dh was diagnosed with cancer last year and had palliative care, despite this there was a lot of appointments and plenty of Macmillan nurses. As soon as he came out from hospital they wanted to put a hospital bed in our house so the carers would find it easy to look after him in the final weeks.

At least they'll be pleased when he makes a miraculous recovery and gets the reprieve via SnapChat.

Bluebells1970 · 13/04/2023 12:52

Can you encourage them to contact PALS at the hospital to find out if emailing news like this is a standard procedure?

Floppyelf · 13/04/2023 12:52

BillStickersIsInnocent · 13/04/2023 11:39

How to I approach this? Relative is late 40s and living with elderly and infirm parents. He has a history of manipulative and criminal behaviour and has been in prison for sex offences.

I’m assuming he has debts and had previous bouts of drug addiction. This sort of behavior needs to be tackled head on. How about probation officer or social services?

Hoppinggreen · 13/04/2023 12:54

BillStickersIsInnocent · 13/04/2023 12:49

@Hoppinggreen what if I’m wrong? It would ruin my relationship with the parents and I love them
very much.

You know you aren’t wrong but you probably can’t convince them.
Going in all guns blazing will certainly ruin the relationship but they probably know the truth too, even if they can’t bear to admit it. Gently suggesting (in a concerned way) that you get more info is the way to go.
Be careful though, people like (presumably) your brother only go for the dying of cancer gambit when they are desperate and other scams have failed so he needs handling with caution as cornered rats can be dangerous

StrandedStarfish · 13/04/2023 12:54

I am a health professional in the UK. In my trust it is a disciplinary matter to send an email containing confidential information to any email address unless it is a secure email address, ie @nhs.net or .gov.uk. I cannot imagine that a terminal prognosis would ever be given in this way

Do you think your relative might have been scammed?

Original poster
BillStickersIsInnocent · 13/04/2023 12:56

@Bluebells1970 yes I thought that too, I’ve tried that, saying that if it were me I would complain to PALS. They’ve shrugged that off saying that their son has come to terms with his prognosis now so nothing to complain about.

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Original poster
BillStickersIsInnocent · 13/04/2023 12:58

@StrandedStarfish I hadn’t considered that but it is a possibility. I suppose they’d be after money for a cure.

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Greenfree · 13/04/2023 13:01

I would offer to go with him to his treatment appointments. I would also suggest to him in front his parents that he needs to start planning his affairs, claiming pip etc, does he need a power of attorney. I would also call his bluff and say that your going to raise the complaint on his behalf as your concerned about his future treatment etc

LadyJ2023 · 13/04/2023 13:09

You do know you don't get emails regarding terminal illnesses. Worked at a drs surgery many years and this is definitely a no no. If he does have emails saying this he has most likely sent them to himself.

ShandaLear · 13/04/2023 13:14

I’d say to him and his family that you have been doing some investigating and you are very concerned that he has been scammed as is it a disciplinary offence to send personal medical information via email and you are going to report it to PALS. Tell your relatives it is disgraceful that their son has been treated appallingly and you are going to report them to (insert relevant body here). Treating the son as the victim, being indignant and disgusted, and reporting it everywhere might be enough to flush him out. But go in all barrels blazing and do lots very quickly.

ShandaLear · 13/04/2023 13:16

ShandaLear · 13/04/2023 13:14

I’d say to him and his family that you have been doing some investigating and you are very concerned that he has been scammed as is it a disciplinary offence to send personal medical information via email and you are going to report it to PALS. Tell your relatives it is disgraceful that their son has been treated appallingly and you are going to report them to (insert relevant body here). Treating the son as the victim, being indignant and disgusted, and reporting it everywhere might be enough to flush him out. But go in all barrels blazing and do lots very quickly.

Not them -it (the situation!)

JingleBellez · 13/04/2023 13:19

I am waiting for lung CT results. Everything good or bad is face to face.

JingleBellez · 13/04/2023 13:21

Bluebells1970 · 13/04/2023 12:52

Can you encourage them to contact PALS at the hospital to find out if emailing news like this is a standard procedure?

It isn't.

knittingaddict · 13/04/2023 13:23

TempNCforthis · 13/04/2023 12:06

Do hospitals actually have your e-mail addresses anyway?

I had a digital consent form sent to my email address. but everything else I have ever encountered in the NHS was via letter or phone. That's for myself and everyone around me.

This definitely didn't happen the way op has been told. Probably didn't happen at all.

tribpot · 13/04/2023 13:23

He seems to think this info will come with the macmillan nurses but that sounds very off to me.

Of course this isn't true. It's a delaying tactic.

I think all you can do is say you've spoken to Macmillan and they confirmed that a patient would never receive a prognosis like this by email, and could the person have got confused somehow.

notapizzaeater · 13/04/2023 13:25

My DH had Lung Cancer, it was all face to face and the doctors didn't like giving prognosis until towards the end. Has he had a biopsy (which will give him his treatment options?)

JingleBellez · 13/04/2023 13:27

notpizza can I please ask a question?

Original poster
BillStickersIsInnocent · 13/04/2023 13:27

@notapizzaeater I’m sorry to hear about your DH. He hasn’t said anything about a biopsy.

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JingleBellez · 13/04/2023 13:28

after my nodule doubled i had a pet ct scan.

AnnaMagnani · 13/04/2023 13:28

I work in this sector and no-one would refer to someone as a 'top oncologist ' even if they are one.

That sort of language is only used by the Daily Mail.

I have seen bad news given by phone and accidentally in letters but never email.

Finally 8 months is an odd figure for a prognosis. I do a lot of prognoses and it tends to be weeks, months, 6 months, years. 8 is a oddly precise figure.

knittingaddict · 13/04/2023 13:28

BillStickersIsInnocent · 13/04/2023 12:49

@Hoppinggreen what if I’m wrong? It would ruin my relationship with the parents and I love them
very much.

You're not wrong.

Also what does he mean about "coming out of the blue"? Presumably he had symptoms, had a scan and then got a result (I don't think this happened). That's hardly out of the blue, is it?

JingleBellez · 13/04/2023 13:30

@AnnaMagnani You work in Oncology?

Original poster
BillStickersIsInnocent · 13/04/2023 13:31

@knittingaddict the first he heard about the diagnosis was that first email giving him 2 years to live. Before that he’d had a chest X-ray and then a CT scan for coughing, breathlessness and chest pain.

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knittingaddict · 13/04/2023 13:33

Well it didn't happen. Consultants are very wary about giving timescales in situations like this. If they do it's because the times is weeks or months rather than years. They would never say this in an email. It didn't happen.

AnnaMagnani · 13/04/2023 13:34

Reading more of your posts - he would absolutely have had a biopsy.

Unlikely to be seeing Community nurses at this point as his entire focus would be on his treatment plan which would be based in hospital. His main support would be his Lung Cancer nurse.

Yes sometimes Community Palliative Care has to cancel appointments for short staffing or emergencies but they wouldn't just give up.