Making sense of hospital structures is no fun, especially when you have a complicated condition.
I’ve had lots of Covid tests because, when I was particularly unwell and hospitalised during 2020, quite a lot of my problems seemed to be exhibited also by patients with Covid-19. But all my Covid test results were negative. On the other hand my condition was complicated and the illness was quite serious (delirium, seizures, fevers, etc), so there were some parallels, especially with those suffering from long Covid. So at least parts of my posted reports of my patient experience in hospital should be relevant to some Covid sufferers as well as to others with complicated conditions; and to health staffs too.
After all we’re always being exhorted to learn from experience, so here are some experiences.
One of the big problems that I and my wife faced during my three-plus months in hospital (and the next few months after discharge) was the sheer number and variety of specialists and consultants involved in my case. Doctors would quite rightly argue that this demonstrated a serious-minded and vigorous medical effort to both find out what was wrong with me and to apply suitable treatments. But from our viewpoint it was a confusing situation that made it very difficult to find out what was happening.
Those dealing with me, or rather parts of me, included neurologists, haematologists, microbiologists, a consultant specialising in delirium, vascular consultants, speech and language specialists, physiotherapists and OTs, as well as generalist doctors. So quite a few specialisms were represented and it was clear that the medics were exploring a multitude of possible causes.
As I was semi-conscious and had delirium during much of my hospital stay my wife took responsibility for speaking to medical staff on my behalf. As she was not allowed to visit me or come into whatever ward I was in she had to rely on phone calls with hard pressed medical and other healthcare staffs. She is immensely grateful for the efforts of the various medical teams, but inevitably had to ride a ‘rollercoaster of worry’ (as she puts it) when told about possible causes, which included lymphoma and encephalitis. I’m very glad that I didn’t know about most of them or, what’s more likely, that I didn’t remember any details. My wife did know but she was not able to talk to any of the specialists directly as the ward consultants were her only source of information!
“Sometimes the appropriate response to reality is to go insane.” – Philip K. Dick
From the patient’s perspective
I’m not a clinician but it seems clear that there are very strong arguments for better connections and more team-working between specialisms and general medical teams. This silo mentality among medics is mirrored in large part by organisational arrangements in hospitals. One important consequence was that despite senior ward consultants being responsible for my overall care, they largely deferred to the specialists; so no single doctor seemed to have a complete picture. And consequently the possibility of any sort of holistic patient care seemed vanishingly small.
This meant for instance that I was prescribed a range of quite powerful drugs at different times, many with significant side effects. Most continued after discharge. Here too there was a lack of coordination of care; there was no clear treatment plan, and we had no idea how long I should continue taking the various drugs, or indeed why I was taking some of them. Consequently we had to go to considerable lengths to get this polypharmacy reviewed. As a result I am now taking about a fifth of the number of pills prescribed at the time of hospital discharge.
This silo syndrome could also be seen in the often-deep separation between doctors and nursing and other healthcare staff. In a couple of the wards I was in they worked well as a team. But in other wards the doctors had little say over the quality of general nursing care for example. This really mattered as, for instance, the quality of nursing care in one of the wards in particular varied widely from low to abysmal. I frequently felt unsafe while I was there.
Silo thinking also applied to the position of ancillary specialist staff, like physiotherapists and occupational therapists. For although their input could be of profound importance to patients I found that their position in the wards could be unclear. For example I became increasingly aware of being physically weak through being deconditioned and I wanted the physios to help me. But nice as they were they were drastically overstretched and unable to do what was needed. Consequently I lost a great deal of muscle strength and it’s taking quite a time to regain full mobility. This had a significant impact on my physical and mental health.
In these Covid times this silo syndrome also showed up the gaps in care in general. For example we found that no one was responsible for ensuring that lines of communication with the patient and their carer were working, even though this is particularly important when hospital visiting is not possible. As a result my wife was constantly trying to ask the right questions in the right manner, of the right person to elicit information about my condition. As a result she felt cast into the role of a supplicant, needing to be assertive and persistent but not a nuisance. She found this whole experience emotionally draining.
While I was in hospital I was generally unconscious or semi-conscious, and apparently my unresponsive state and delirium was pretty evident. So it could be argued that it was even more important for the doctors and consultants to ensure that we knew who was responsible for what.
Incidentally, my brain presented this whole experience to me in the form of a coherent hallucination about us inmates being in a hospital-based TV soap opera. We learned our lines and acted our roles, as did the doctors holding their rounds. The supposed fact that the story was based in France and featured a number of Corsican actors and technical staff only illustrated the extent of my brain dysfunction at the time.
Who takes responsibility?
It seemed clear to us that good patient care should not be conditional on individual ward practice. Yet who is empowered to make sure that consistent and appropriate care actually happens across wards or indeed across hospitals? This question unavoidably leads to the conclusion that hospital services as envisaged by managers and by specialists are not necessarily the same at all; nor are they necessarily the same as those which patients might want, or need. I’d even question whether the individual ward structure of hospitals, as we know them at present, are necessarily the most healthy for patients.
This sort of questioning also raises other issues such as whether it is possible to reconfigure health services to rid hospitals of ‘geriatric’ wards, where staff expectations of patients’ wellbeing and capabilities can be so awfully low.
Unfortunately the silo syndrome in healthcare affects patients not only in hospital but in the community as well. For example I’m aware that my GP is reliant on the hospital doctors for advice about medications for instance but she often finds it difficult to contact them. Meanwhile it’s clear that consultants are usually under great pressure to perform and are consequently overworked and find it difficult to respond to queries from patients of GPs in a timely way.
For our part we patients, and our carers, can be left struggling to find out from our own local doctor, or a hospital doctor, what is causing certain symptoms, and how to cope with worrying side effects; for instance what is ‘normal’ or to be expected?
Finally, my wife and I have managed to interact usefully with medics, but then we’re both used to dealing with authority figures. So what happens to people who are less confident or less articulate? It is upsetting to say so but it seems likely that they basically get left behind, often confused and frequently frightened. This is not, course, how a national health service should be, but I think it is.
“Cleverness is not wisdom” – Euripides
