An inpatient hospital stay – the gulf between the textbooks and the real world

I recently had a lengthy stay in hospital. The reason for that stay isn’t particularly important. But it provided an interesting opportunity to observe the implementation of the legal frameworks I work in, on the frontline.

Let’s start with privacy

Medical professionals are very keen on privacy. They talk about patient confidentiality a lot. Even with a court order requiring disclosure of records, I find it difficult to get my clients’ information, sometimes. If I called up and asked for the medical records of a stranger I would, quite rightly, be told where to go.

Those same principles don’t seem to apply if you just so happen to be in hospital at the same time, though. In 9 days, I learned an awful lot about my fellow patients’ medical histories. They no doubt learned a lot about mine, too.

Take the 16 hours I spent in a corridor on A&E, for example. In that time I had to recount my medical history to 2 doctors and about 5 different nurses. Each time I gave my name and date of birth, allergies and medications. During this time, I also had a panic attack, all whilst wearing a wrist band with my personal information on it.

That’s a whole ton of information that would be considered “special categories” within the meaning of the Data Protection Act 2018. Records about this information are given additional protection within the legislation. Yet this information was available to anyone and their mum, who just so happened to be passing through that corridor.

On the ward, the number of people who could overhear information was smaller. But the opportunity to overhear is far higher. And the doctors pulling the curtains round when they speak to patients doesn’t actually provide any additional privacy. At all.

Multiple times a day, we were asked about our bowel habits etc. And whilst I am not squeamish about things like that and don’t mind discussing this with medical professionals, having so many other people listening in does sit uncomfortably with me. I also had to have multiple conversations about my contraception in this environment too. In no other scenario I can think of, would you be in a position where you either talk about these issues in front of multiple strangers, or risk not receiving proper care. It isn’t really free consent in this situation, where the consequences of not discussing these things in an open ward could be so significant.

What I also had to experience was everybody’s visitors coming twice a day and asking questions or commenting to me on why I was there. This was something I found so off-putting I started pulling the curtains round my bed during any visiting time when my family wasn’t visiting. It saved me from the pitying looks, at least.

These issues are, I suppose, a by-product of the environment. It is a more efficient use of space in hospital to have shared wards rather than individual rooms. And I can see how this helps staff monitor patients too. Somewhere down the line, a decision has been made that these benefits outweigh the privacy implications. The hospital I was in is quite old though, and I do wonder if a review of that decision will take place at any point.

My experience, though, as someone younger and more articulate and aware than most of the other patients, was that some staff members would start actively disclosing information to me. The clearest example of this was that one of the patients was very agitated during the night. No one on that ward slept that night. I didn’t even comment on it, much. I just mentioned that morning that I hadn’t slept well. This then prompted a lengthy conversation about the sedation options and why the doctor had not prescribed a sedative for this patient. Which was, frankly, none of my business.

So the reality of confidentiality as an inpatient was really very different from what we all understand about patient confidentiality.

I also made some observations about informed consent.

The NHS has clear guidelines about consent to treatment, which can be found here. This talks about consent being voluntary and about being given full information on treatments, risks etc. This was so starkly not followed during my hospital stay, that it was quite scary.

During the stay I received 9 different medications I had not previously been prescribed. Yet I have no idea what the risks and benefits of any of them were. I wasn’t even given the leaflet that would come with medication prescribed by my GP. Indeed, one of them I have absolutely no idea what it was even for.

This was particularly evident regarding blood thinner injections. I am quite sensitive about this type of medication. My father died from an aneurysm whilst on blood thinners, after a few incidents where it seemed clear his body wasn’t tolerating the dose. So it’s a medication I would very much prefer not to take. At least, not without a lengthy conversation. But no one engaged in discussion with me about this. They simply stood there, needle in hand. Whilst they always asked if they could administer it, it was made very clear that “no” would not be accepted as an answer. At the point they gave me the first dose I was so out of it through medication, exhaustion and panic, that I wasn’t in a state to question it. And once I’d accepted one dose, they were going to administer it every day, whatever I had to say.

I also witnessed other patients being allowed to give or refuse consent to medications when their understanding was an obvious issue. In one case, the patient and the ward staff didn’t speak the same language. A translator was used for the doctor’s consultation, but not medication rounds. The nurse would just loudly say the medication and hand it over.

Now it is possible that the patient remembered what the doctor had said about the medication. But given a) the doctor didn’t actually give any information about medication in any of their conversations and b) this patient was also recorded as having a diagnosis of dementia, this seems unlikely. And it seems like somebody should really have checked that, rather than just assuming.

Another patient had a dementia diagnosis, infection related delirium and presented as very drowsy. But she was allowed to consent or decline medications and treatments throughout her stay. I witnessed no evidence of a capacity assessment, let alone best interests analysis, despite there being clear reason to believe she might lack capacity.

To be clear, I’m not suggesting they shouldn’t have treated her with whatever medications were clinically recommended. But I am concerned that capacity didn’t seem to even register as something to be discussed or considered, even when she was declining medication.

Again, I appreciate why professionals on a very busy ward would want to get the medication rounds done as quickly as possible. But it set my “bad practice” internal alarms off. Which doesn’t really give confidence that the service being given won’t have other faults too. So it did nothing for my general state of panic.

Another thing I noticed was that the patient with delirium and dementia was, according to her family, receiving 1:1 support in her care home, prior to admission. Yet, for unknown reasons, that 1:1 worker didn’t attend the hospital with her at any point during her stay. So this very confused and frightened woman who was used to having someone nearby to reassure her whenever she needed it, suddenly found herself in unfamiliar surroundings, with strangers everywhere. Let alone all of the noise, smells and general chaos of a hospital environment.

It doesn’t seem conducive to her recovering, especially when she had a weak heart.

On her worst day, the staff ignored her most of the time. They were too busy with other patients. A couple of our ward mates started very helpfully shouting at her to “shut up”. None of us had slept, so I appreciate their frustration, but it achieved absolutely nothing.

By this time I was, mercifully, well on the way to recovery, so I spent that day sat on the chair between my bed and hers, answering her questions calmly, reassuring her and distracting her. I do not think she was quiet for more than 10 minutes at a time, but she stopped shouting for help and she was quiet enough that the rest of our ward mates got some sleep.

Was it what I wanted to be doing when I was recovering myself? No. Was it appropriate for the ward staff to rely on me to do this? Also no. Were they very lucky I was there, with my training and experience? Absolutely.

I know that I have had a number of cases where my clients who receive 1:1 support were admitted to hospital and received that same 1:1 on the hospital. And I do think this patient would have benefitted from that same step being taken. It seems to be a better solution than relying on me, a fellow patient, to keep her calm.

There may well be reasons why that wasn’t an option, because I obviously don’t have all of the information. But I saw no indication that this was even considered at the time.

The last framework I briefly want to mention is the Care Act 2014. And I mention this because it was not discussed with any of the patients on my ward. One of the patients was openly saying that she was going to struggle to manage at home during her recovery. She was eventually provided with information about how to access support, because I specifically advised her to ask about it. Even then, though, her entitlement to reablement free of charge, how an assessment would work etc is information she only received from me.

And I am willing to bet that most hospital wards don’t happen to have a community care solicitor sitting there, able to give that advice…

I have no idea what the answers are to these issues, really. Better training and better staffing seems like a good place to start. But that costs money and we all know the state the NHS is in at the moment, so that seems unlikely any time soon.

These are simply observations that have been bouncing around in my brain since my hospital stay, so I thought I would share. Any thoughts, comments and your own observations are welcome.

In case it isn’t obvious from the fact I still haven’t identified the authority I used to work for, or the organisation I now work for, the views expressed on this blog are my own opinion and not the opinion of that local authority or organisation.