The ward will not tell me anything because of data protection, and I am the one doing everything at home. Where do I stand?

#1dee1972(Joined Apr 2025 · 24 posts)August 3, 2026, 7:26 pm

Day five of my mother being in, and I have now been told twice by two different people that they cannot discuss her with me for data protection reasons.

I do her tablets. I do her shopping, her appointments, her forms. I am the person who will be doing all of it again on the day she comes out. And I am ringing a ward being told, politely, that I am not entitled to know whether her chest is any better.

She is muddled at the moment, which is part of why I am asking rather than getting it from her, and I suspect that is also why the answers have dried up. I am not trying to override anybody. I just cannot plan for a discharge I am being told nothing about. Is this actually the law or is it a thing people say?

#2K. McAllister(Joined Nov 2025 · 11 posts)August 3, 2026, 9:10 pm

It is about eighty percent a thing people say. Different country, same sentence, and in our case it evaporated the moment my mother said out loud in front of a nurse that she wanted me told things.

Which is easy to arrange when they are well and nearly impossible in the middle of a bad week, and I appreciate that is exactly where you are.

#3Dr Nadia FarhatMedical moderator(Joined Nov 2024 · 54 posts)August 5, 2026, 9:47 am

It is a real principle being applied badly, which is the least satisfying answer available and also the true one.

The principle is that clinical information belongs to the patient. Where a person has capacity, information is shared with a relative because that person agrees to it, not because of the relationship, and that holds however much of the caring you are doing. The failure in what you have been told is that the sentence stops there, when in practice there are three things staff should be doing and often are not.

The first is asking her. If she has capacity for that decision, and many people who are muddled on a Tuesday have capacity on a Thursday morning, the fix is one question asked at a good moment and recorded in the notes with your phone number. Ask for exactly that: not a conversation about you, a note that she consents to information being shared with you, and your number attached to it. Capacity is decision specific and it fluctuates, which cuts both ways: it is not something you either have or do not have for the whole admission.

The second is that where somebody lacks capacity for a decision, the frameworks do not shut families out. In England and Wales the Mental Capacity Act 2005 presumes capacity, treats it as specific to the decision in question, is explicit that an unwise decision is not the same as an incapable one, and requires that anything done for a person who lacks capacity is in their best interests. Working out what is in someone's best interests requires knowing what they would have wanted, and the people who know that are the family. Ireland's Assisted Decision-Making (Capacity) Act 2015 works on the same principles. The instruments have different names in the United States, Canada and Australia, but no system I know of concludes that the person who runs the household should be told nothing.

The third is that receiving information and giving it are not the same transaction, and this is the part carers most often miss when they hit a wall. Nothing whatsoever prevents you from giving the ward information. If you get nowhere on the phone, put in writing what she is normally like, what she takes, what she does not report, and what you can and cannot do at home, hand it to the nurse in charge and ask for it to go in the notes. NICE guideline NG27 tells hospital and community teams to recognise the value of carers and families as an important source of knowledge about the person's life and needs, and it requires the team to take account of a carer's willingness and ability to provide support where a discharge plan relies on them. Those are useful sentences to have in your hand.

On the muddle itself, and this is general rather than about your mother, whom I have not seen: new or fluctuating confusion during an admission is a clinical matter in its own right and worth raising by name with the nurse in charge today, along with what she was like a fortnight ago, rather than treating it as the background to a communication problem. Delirium or dementia sets out why the distinction matters and why the timing of onset is the thing to describe.

Practically, ask to speak to the nurse in charge rather than whoever answers, use the phrase next of kin and main carer, and ask who is coordinating the discharge, which is a question about arrangements rather than about her medical information and should be answered regardless. When they go into hospital has the rest of it.

#4ron-at-home(Joined Aug 2025 · 17 posts)August 6, 2026, 7:19 am

The distinction between getting information and giving it is the thing I wish somebody had told me two years ago.

I spent an entire admission fighting to be told things and never once thought to simply write down what I knew and hand it over. I was treating it as a rights argument when half of it was a paperwork problem I could have solved myself in twenty minutes.

#5dee1972(Joined Apr 2025 · 24 posts)August 19, 2026, 8:41 pm

Some progress, not all of it.

Asked her on the Friday morning, which was a good morning, and she said yes and a staff nurse wrote it down with my number. The phone calls since have been completely different, same ward, same people. So it was a note in a file all along.

What I have not got anywhere with is the discharge. Three times now I have asked who is coordinating it and got three versions of somebody will speak to you. She is supposedly going home next week and I still do not know what has been referred or whether anything is coming to the house.

I am not going to pretend that is solved. But at least I am being told nothing by people who now ring me back.