Would the NHS send a letter diagnosing cancer?

[em2001ily]

So if tests were done and the test results indicated that cancer is likely present, would the NHS letter actually state that, or would it just say 'make an appointment'?

I am asking this on behalf of a friend.

Thank you.

I'm only young, late 20s, so statistically it's very unlikely that I would get cancer. A friend of mine in her late 40s recently had a scare, but it turns out that all is clear.

You're right, there is social tiptoeing around cancer. Some people even like to keep a diagnosis secret, insofar as they can. I suppose anyone can keep any health issue private if they want.

I've always thought that the NHS, or any doctor, would not diagnose any condition or disease (even if it's something non life-threatening, or something not serious) in a letter. Whether that's a positive or negative thing, I don't really have an opinion.

Yes, you're unusual. Most people would want the opportunity to ask questions. Significantly bad information accidentally given in emails/texts has in the past resulted in suicides.

My friends dad found out he had cancer as he had a letter from MacMillan saying they were sorry to hear about his recent diagnosis of cancer and then outlined the support they offer! Consultant told him 4 days later. Shocking.

But if you have the information before the appointment, you are in a position to ask more pertinent questions which are better thought out.

Also the test results are the patient's personal information, the patient is statutorily entitled to have them and is the person with the greatest entitlement to have them. I would refuse, and have, to attend an appointment to discuss my personal information if it were not provided in advance.

The issue I have with that is that your friend's dad should have given his permission for his personal data to be shared with a charity.

Yes and we are all different and cope in different ways. I was told once on a similar thread that medical professionals would refuse to give me results unless I had an in person meeting to deliver them. A simple, plain English email would work best for me.
As an aside, I was told of both my sibling and my dad's deaths (both unexpected and out of the blue) by phone not in person. This would absolutely have been preferred by me than in person although the call was due to distance rather than best delivery method. Even that I'd have preferred to receive by text. Get the message, take it in for a bit, then act.

@kendodd, yes they do that. However, it is a "best practice" NHS thing. The fact that one's personal data belongs to the patient makes it a statutory right to give it to the patient, providing they have capacity, on request.

When having a test, I always formally note nowadays that I am only consenting to the test on the basis that I will be provided with a copy of the results/test report once they are available and before any follow-up appointments. I make it clear that I will not attend any appointment without that information.

I have been told, on the phone, that they have my results and need to make a follow up appointment with the Dr for a treatment plan. A biopsy for a lesion had been taken. I asked for the result "ooh no can't give that to you - patients don't understand them". Well, if I need a treatment plan, it can't be good news can it. Initially nobody else was available to speak to me. When I called back I got through to the clinical director who repeated the twaddle about NHS best practice but relented and sent me a copy of the report. It said BENIGN. They were expecting we to worry due to needing a treatment plan for six days. No treatment plan was needed. It was a waste of NHS time to even call me to an appointment (and mine). Needless to say I made a formal complaint.

It's all a part of the patriarchy. Let's not have the silly patient prepared. We embrace equality and diversity and assume all the patients are brick thick and live in caves.

And as an individual, you could ask for that to happen. It doesn't mean it should automatically happen for everyone, including people who are vulnerable, have no social support, have learning disabilities, have English as their second language etc etc.

Good to hear about biopsy results, it's really scary. My grandfather went through something similar, but because he also got treatment early, it helped him a lot. We also used a cancer care service, which gave him great support.

And I completely get that. They could simply ask or even have a tick box 'how would you like to receive the results?' Why is it 'best practice' to insist a patient receive test results in the worse way possible for them ?

The number of people who would want to get a cancer diagnosis any way other than face to face is so vanishingly small that there is no need to ask everyone.

Citation?

Why are you assuming that ?
There are at least two of us on this thread. And even if it is vanishingly small, why can't we be given such serious and life changing information in the best possible (instead of worse possible) way for us?

Just using my 25 years experience as a doctor in the NHS and the knowledge of patients that I've gleaned over that time. Not all of whom are on mumsnet.

I received a letter confirming a telephone appointment with the surgical team that requested my scan. My telephone call is tomorrow. After reading this post I'm still none the wiser of what to expect. I'm in Ireland.

Just putting my 2 pence in here. I do think a standardised, one size fits all approach to something like this is outdated and not necessary.

I am in the midst of this right now. I have an appointment on Thursday to get the results on my biopsy. I was supposed to be receiving them via a phone call, that's how confident my consultant was that I had nothing to worry about. I then received a phone call with an appointment and have now had a letter confirming the appointment.

I have called and requested more information from 2 different teams prior to my appointment and have been told in no uncertain terms, I can't have this and I must wait for my appointment.

I am someone who really struggles with the unknown, I would far rather know possible eventualities, no matter how awful they might be. I also appreciate, others are the polar opposite of this and would rather not know until they are sat infront of a professional who can answer their questions.

IF my appointment is based news, I would rather of had the last week to prepare any questions I might have and do some research.
IF my appointment isn't bad news, I will be absolutely livid that I have been left in this position for the last week when I categorically asked and could've had an awful lots of stress taken away.

IMHO, if a patient requests information about their own medical health, then I think they should be given it. I don't believe anyone should have the authority to withhold this information from me personally.

I’m dealing with cancer for the fourth time in my life. I’m 53 years old. Would I want to have been informed about my diagnosis via an app or email? Hell, no thanks! Each and every time has been hideous and I’ve been bloody glad to have the professionals in front of me, to fire the questions at.

The psychological impact is huge. Someone mentioned about many cancers being treated into remission. Do you know how fucking brutal these treatments can be ( physically and psychologically)? What it even takes to reach remission is huge! Breast cancer can quickly become metastic breast cancer.

Any cancer diagnosis news, should be shared face to face, between person and professional. Anything less, in my view, is unacceptable.

I'm sorry for your diagnosis and very glad you are receiving the information in the best way for you.
Face to face would absolutely 100% be the worse way possible for me though. Why don't people believe me ? Why do they think they know better than I do about how I feel and insist I should be given bad news how they prefer to deliver it? Regardless of how badly this would affect me ?

For information, I have received very bad information twice, my dad's death (car crash) and sibling death (heart attack) by phone (a text would have been better). I thank God that I was alone and could just sit with the news and digest, before having to speak or face anyone.

How would you know if nobody is given the option to receive the information how they would prefer to receive it ? How do you know they wouldn't cope better receiving bad news alone if that's what they said they wanted ?
If you are a doctor, please, take what myself and a couple of others are saying on board and allow people to make the best choice for them in How they receive bad news. Please don't just continue to insist you know what's best for me and others.

I was called in for biopsy results after having a skin lesion removed and feared the worst. Luckily I was wrong! No idea why they called me in to receive the good news face to face 🙄

I'm another person who would rather be told immediately (by email/phone) rather than being called in to be told face to face, even though I do understand the reason for that policy.

I hear you. Everyone is different aren’t they. I absolutely respect your wishes and views on this. To be honest, if I get any more bad news, I’d probably be happy with a text or WhatsApp. That’s not dismissing anybody else’s thoughts on this. But thinking about it, after this sack of shit, I probably don’t need to be sat in a white hot room, waiting for an overworked oncologist, who is running 1.5 hours over time, to tell me the inevitable.

Do any patients ever actually get asked how they would like to receive significant and possibly life changing test results?
I get the impression this question is never asked. And if not, why not ?

Don’t think so? I think the NHS just like to give more information/a diagnosis in person.

However I think that some test results, such as mammogram or bowel screening results, are shared in a letter to the patient…. And if those results showed any abnormality/cause for further testing, then the patient will see that. Maybe @redphonecase could tell us?

I probably would have said I’d rather get told I had cancer by letter /phone than wait to hear in person but now I’ve had cancer I think that would have been terrible for me. TBH there was a lot of evidence ahead of the appt that my biopsy wasn’t coming back benign which I chose to ignore, one of which was that a HCA said in passing that if it was benign I’d probably get a call before the appt to tell me so. So if the news isn’t devastating then they probably do tell you over phone.

if I had received the bare facts about my cancer that I had at that first appt: “grade 3, tumour estimate to be 2cm likely treatment: chemo, masectomy and 10 years of hormone therapy possibly spread to lymph nodes but unconfirmed”through a letter at home with the promise of an appt in 3 days time to digest and ask questions then I think I would have spent those 3 days in utter confused turmoil googling all the terminology and getting completely misinformed. It was totally confusing even WITH the ability to ask questions (partly because my surgeon was a terrible communicator and my cancer nurse isn’t great either but that’s by the by). And I am a well educated person with enough cancer in the family that not much of the wording was new to me.

NHS gets a lot wrong but I noticed even through my upset that they were really good at that appt. It was very rehearsed and they predicted all my questions but didn’t give me to much info. They also gave me some leaflets to read in my own time so I didn’t just go to google and get the wrong inflation.

I can understand this point of view too. I hope your health is getting better now