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Do I have the right to know my mother's medical arrangements?

(146 Posts)
Doodledog Fri 14-Aug-20 12:10:33

My mum is 86, and I am her next of kin. I also have POA, but she is fully compos mentis, so this is not really relevant. Mum has been referred to a hospital doctor for investigations into an ongoing problem.

I am currently on holiday, and my husband went home to run some errands, and found a message on the answerphone. It was from the hospital, asking me to call, saying that it was 'about Mrs X (my mum)' with no other information.

Long story short, the call was because the receptionist had been unable to contact her, and wondered if I had an alternative number, or could ask her to contact the hospital.

Am I right to be concerned about this? What about my mother's right to confidentiality? The message was picked up by my husband, but for all anyone knows, he could have picked it up it in front of other people, he is not the next of kin, and even though I am, that does not give me the right to know my mother's medical arrangements.

As it is, the appointment is not about something that my mum was keeping to herself, but she has every right to do so, surely?

If this is the general policy, what about a message about a pregnancy that is picked up by an abusive father, or all sorts of other possible awkward situations?

I asked the receptionist about this, and she seemed to think that as she hadn't given details of the appointment it was ok. I pointed out that I had no right to know about the appointment at all and that answerphone messages are not private, but although she said she would speak to the consultant about the policy, I'm not convinced that she fully grasped what I was getting at.

What do you think?

Baggs Fri 14-Aug-20 12:16:25

I don't think phoning next of kin if unable to make contact with a patient is quintessentially wrong. Isn't that partly why the hospital had your number?

The reason for the hospital appointment needn't have been mentioned.

Happy to be corrected on this.

Marydoll Fri 14-Aug-20 12:20:31

That's a tricky one. I can see why you are annoyed.

However, if you have POA and the hospital are aware of this, they probably thought you would be privy to any medical history and they must have a record of your phone number for them to contact you if your mother isn't available.
By giving your phone number, surely taht implies consent.

As long as no personal info was given out, I would be glad that the receptionist was trying to help, but she probably shouldn't have left a message on an anwser machine.

My children have full POA for me and I'm still very much on the ball. They are fully aware of all my medical information, just in case I quickly become incapacitated and they need to be able to speak for me. It may save my life.

Doodledog Fri 14-Aug-20 12:20:36

No, they have my number because I am on my mum's records as her next of kin.

The message did not leave a reason for the appointment, but my issue is that I don't think I have a right to know that there is an appointment at all.

I don't like the idea that my medical appointments could become public knowledge, and also worry that if an abusive person found out about a relative's appointment they could coerce them into saying what it is about, with possibly dangerous consequences.

I am really surprised that this is allowed, as I thought that a doctor/patient relationship was protected by confidentiality.

Smileless2012 Fri 14-Aug-20 12:21:49

As the message referred only to your mother's appointment and providing there was nothing about a specific department for example, therefore giving any additional information which could be used to determine what the appointment was for, I don't see this as an issue.

If someone 'phones for Mr. S., and ask if he's available, whether he is or not, I always ask whose calling and if it's the doctor's surgery they say so and on one occasion asked me to get him to 'phone back about an appointment.

Baggs Fri 14-Aug-20 12:24:39

Yes, there is an essential difference between knowing that someone has a medical appointment and knowing what it is about.

Doodledog Fri 14-Aug-20 12:25:34

Marydoll, my children have POA for me, but I was assured that this would only kick in if a doctor had decided that I was unable to speak for myself, and that until then my confidentiality would be respected.

They are not aware of all of my medical history (not that there is anything there I want to hide - I just don't tell them of every appointment), and I don't think it's appropriate that they should be.

It's the principle in this case, rather than the case itself. My mum's issue is not an 'embarrassing' one, and I am now aware of the details, but that's not the point.

Actually, as I am not at home, I didn't know about any of it until I rang Mum about the message. She was happy to tell me, although she did say that ordinarily she would have waited until after the appointment so that I wouldn't worry until she knew what the results had been. that should have been her decision, IMO.

Marydoll Fri 14-Aug-20 12:40:26

Doodlebug, I do see where you are coming from. However, last year I ended up in Coronary Care with a severe allergic reaction to an RA drug. My children were totally shocked, as they had no idea how unwell I actually was prior to the episode. I was very good at hiding my poor health, especially at work.

For years, I kept nearly everything from my children and often from my husband, as I didn't want to worry them unnecessarily.
However, I got a severe talking to from the cardiologist, who
said I had been very foolish to hide everything from my family and they should really know.

Now they are overloaded with information and can't deal with it! They have become overprotective and it's driving me mad!

IMO, there was no breach of GDPR, as no personal info was given out. The only thing your mum can do, is have a note on her file, saying not contact you in future, if they cannot contact her.

WOODMOUSE49 Fri 14-Aug-20 12:45:53

My step mother instructed doctors etc not to divulge any information to family. She had a POA (not family) for financial affairs only.

She was hard of hearing so when I rang hospitals and doctors to sort out something, she always had to give the OK for me to talk to them.

She died 18 months ago and prior to that I had so many problems with the doctors not communicating with me. I was really worried about her. She had a convulsion in my car on one of our shopping trips and found on the floor by neighbour and carer on 3 occasions.

Calls and letters to the surgery were not replied to. I complained (with help from the ombudsman) but the surgery repeatedly said they were acting under the patient's instructions.

We (DH and I) were her closest relatives.

Doodledog Fri 14-Aug-20 12:46:38

Thanks, Marydoll. Maybe I am over-reacting. My mum isn't at all concerned, ironically - I am the one who feels strongly about confidentiality smile.

Marydoll Fri 14-Aug-20 12:52:26

Doodlebug, I suspect you may have been caught unawares by the phone call.

I'm very much involved with GDPR in our Diocese and take it from me, there is no-one more rigid than I am!!! grin

Luckygirl Fri 14-Aug-20 12:54:23

You are named as next of kin (reasonable, especially as you have PofA); hospital could not get your Mum, so rang you. They did not reveal the medical problem - so I cannot see what your problem is. They were acting responsibly in your Mum's best interests. Sounds fine to me.

As I understand it your Mum is not annoyed, but you are. I wouldn't worry about it if I were you. The hospital has enough to worry about!

BlueBelle Fri 14-Aug-20 13:18:58

I m so sorry but like luckygirl I really don’t see what is wrong, no protocol seemed to have been broken so yes I do think you ve had a little over reaction I don’t know what they actually did wrong in your eyes, they gave no information away I don’t see what you wanted them to have done

Doodledog Fri 14-Aug-20 13:20:44

Luckygirl, my problem is that if someone has a medical appointment, that should, IMO be between them and their doctor.

To remove my mum from the equation, what about a hypothetical 20 year old who is pregnant and wants a termination. She lives with her father, who is controlling, and does not know that his daughter is sexually active. He picks up a message on the answerphone about an appointment for the daughter, and questions her about it. She knows that withholding information from him will lead to violence. She is going to have to lie, (and if he is very controlling he is likely to find out about the lie), or tell him and face the consequences.

That sort of situation is the reason that I am concerned - as I way, it is the principle rather than my mum's case itself. My mum is only looking at it from the POV of her own situation, and that she doesn't mind me knowing about her appointment (even though she would have preferred to tell me afterwards).

Unless I am mistaken, though, POA is not relevant until the patient has no agency of their own, and NOK is a legal status - it does not confer rights to know someone's business while they are alive. It is because I am listed as NOK that the hospital had the number, not because my mum has told them that I should be contacted if she is unavailable.

I am prepared to accept that I might be over-reacting, though, so I do find other points of view valuable. I'll give it some more thought.

Oopsminty Fri 14-Aug-20 13:22:21

I can't see a problem either

Oopsadaisy3 Fri 14-Aug-20 13:51:33

Let’s widen this out then Doodle as you mentioned a hypothetical scenario,

your Mother unknown to you is in hospital, she doesn’t want you to know, but the hospital has your phone number as next of kin. Sadly your Mother takes a turn for the worse and the hospital calls you to get you there ASAP.

Is this intrusive? Or do you thank them for calling you.?

Doodledog Fri 14-Aug-20 14:00:55

If she doesn't want me to know, then I think that her wishes should be honoured.

Obviously, I would be devastated in those (unlikely) circumstances, but in the end, I think that doctor/patient confidentiality is very important, and that the patient's wishes are paramount.

Obviously the NHS can't possibly know everyone's individual feelings on something like this, but I don't think that it should be assumed that people are ok with having messages left on landline answerphones about their medical arrangements, however guarded they may be.

Luckygirl Fri 14-Aug-20 14:15:52

Maybe there should be some detailed guidelines as to being named as NOK in hospital notes so the the named person and the patient know what is and what is not involved in that. Mind you it would involve a mass of small print, which, in the main, I do not think people would be bothered to read.

Luckygirl Fri 14-Aug-20 14:17:14

The PofA is indeed not relevant at this stage; I just mentioned it as one good reason why you had been named as NOK. Are you happy to be named as NOK?

Doodledog Fri 14-Aug-20 14:21:46


The PofA is indeed not relevant at this stage; I just mentioned it as one good reason why you had been named as NOK. Are you happy to be named as NOK?

Of course I am. Why would you think otherwise?

My concern was with my mother's privacy, and I wondered about the wider implications of the situation. That doesn't mean that I don't want to be NOK for my own mother.

Evie64 Fri 14-Aug-20 14:40:53

Did your mum get asked if she was happy for you to be contacted? If not, then sadly, however innocent this contact with you was, it is a breach of confidentiality. I used to teach new medical reception staff about how vital confidentiality is. An example I often used was a patient has left their coat behind in the clinical room. What do you do if someone else answers her phone when you're trying to let her know? You do not tell the person where you are phoning from, you do not tell the person anything other than to ask if she can please phone you back and give your first name and the telephone number only. Another example I used (a true one) was a husband phones the GP practice and says "i think my wife is seeing the doctor today, has she been in yet and left yet as I'm on my way to pick her up". The receptionist replied "No, she's just gone in, she should be out in about 10mins". The patient was in a Women's Refuge. The husband waited outside and when the patient came out he attacked and killed her. Horrific. You have to be so careful. Say your mum had an appointment that she didn't want you to know about at a sexual health clinic for example? Definite breach in my opinion.

Baggs Fri 14-Aug-20 15:27:54

That is a useful post, Evie. Thank you.

On the subject of leaving a phone number though, unless something like an 0800 number is given, it won't be hard, especially if it's the local surgery or hospital, to find out whence the number comes. And if it's an 0800-type number, I wouldn't call it back on the strength of only a first name.

Doodledog Fri 14-Aug-20 15:44:13

Thanks, Evie64.

Your examples are the sort of thing I had in mind. It was never about my mum’s situation itself, but about the principle. I was beginning to wonder if I was losing the plot grin

Baggs Fri 14-Aug-20 15:57:06

Earlier this year information about a fracture (I'd been told there was no fracture) from the hospital where I had xrays after a fall did not get through to me for forty-eight hours because no message was left and the call came on an 0800 number to my mobile. Unless I'm expecting something I don't answer calls to my mobile from numbers I don't have in my contacts already.

As it happened it didn't matter too much though my GP, who got the information to me eventually, was pretty disgusted. What if it had been something more urgent?

Doodledog Fri 14-Aug-20 16:04:16

Why was the GP disgusted? With you for not answering your phone, or with the hospital for not leaving a message?

In those circumstances I would have expected them to text or leave a message, as it was your phone. My mum's message was left on a landline phone that wasn't hers, and the receptionist had no idea who had access to it or may have heard it played back.