I have been spending a little more time than I would like investigating health clinics, diagnostic procedures and hospital. A recurring theme for me is inadequate, conflicting or confusing communication of potentially important medical information. My own position is that I have a wide vocabulary and good verbal fluency, but my listening comprehension is sometimes over-ridden by my own preconceptions or overwhelmed by sensory and emotional overload. At my worst I babble very fast, repetitively ask for confirmation of the same answer or simply become mute. This confuses people.

I am currently in-between two abdominal surgeries, the first involving 3 nights recovery in Intensive Care and a further 4 in a ward; the second will follow 6 weeks of recuperation at home (in which I am barred from lifting anything heavier than a jug of water). Needless to say the delivery of a diagnosis of major surgery at 53 requires some emotional processing (which I don’t think I have really started) and a great deal of exposure to beeping monitors, machinery and over-lapping conversation.

The staff have been absolutely fantastic and extremely accommodating. There are some areas of procedure and infrastructure that I found confusing.

Historic signage

I attended a number of diagnostic procedures in many buildings and noticed a huge variety of inconsistent signage. Some buildings are excellent and some extremely lacking – which is fine if asking the way doesn’t promote anxiety, as it does for me.

One building had expanded some years ago with a new wing, allowing departments to increase in size in the older wings. One had renumbered all the consultation rooms, but bizarrely had applied the new numbers below the old ones and giving me the option of two Room 15s to wait outside.

Two hospitals had floors had the most gorgeous coloured directional lines inlaid in the lino, except reorganisations (some years ago) meant that they were no longer correct. Following the red line to Bloods worked, but none of the others – again fine, if you don’t panic when lost and forced to ask a stranger for directions.

It would be fantastic to see signs made at eye-level, in a consistent size, font and colour combination, with the same wording throughout the health system.

Missing signage

One hospital had a newly architect-designed entrance lobby. It was a beautiful, minimalist design with a kind of Zen appearance involving a small babbling fountain in front of a tiny kiosk with a human receptionist. There were, as far as I could see, no signs of any kind anywhere in the lobby, so there was no option but to ask the way to the clinic I needed.

In the same building, having finished one test, there were no signs either to the exit or to other departments. The poor receptionists was quite understandably irritated by the constant stream of visitors looking for something else.

Incorrect messages

A hilarious (unless hilarity makes you panic) episode occurred when my in-patient instructions directed me to report to “Patient Admissions” at a set time. There is no desk, door or office called admissions anywhere in the building. After a bit of pacing and heart-racing I asked at a desk called “Enquiries”, where a charming member of staff told me this desk was in fact “Reception” and incorporated the patient admissions process. It would be so nice if the admission letters matched the signage, or (better still) shared a unified physical map provided by the hospital.

Mutating unit sizes

What is a Suite or Clinic? In one organisation the buildings contain suites, which in turn contain clinics – a particular Clinic is one of many in a Suite of similar clinics in the Out Patient Department building. In another organisation there are several buildings on one site, each building a numbered Clinic, within which the specialist occupy one Suites per specialty.

In mental health and primary care it seems more common for a Clinic to be an entire complex of buildings, the Out Patient Clinic or the Community Health Clinic, for instance.

Just to confuse the issue further, a Clinic may be an event and not a physical structure (like politicians’ clinics) with moveable times and locations, e.g. “I have booked you into her Thursday Clinic, which is held on the other campus”.

Oral, visual and written communication

My in-patient admission did include a set of questions on barriers to communication including visual (such as requiring glasses, which are taken away during surgery), hearing aids, language and cognitive barriers. Asperger syndrome does not fit well into the barrier questions, but was added as a note. It would be good to see cognitive barriers such as dyslexia, sensory sensitivity, limited working memory and social-communication differences included in the list. Understanding of Asperger syndrome / autism is improving but not yet universal.

It is very hard to hear, comprehend and retain verbal instructions, especially when surrounded by the amount of machine noise and competing human voice in a typical health setting. It used to be common practice to always hand a written appointment card to visitors, but not any longer. I always try to confirm the day of week by asking the receptionist to repeat the date (from my phone calendar), or confirm the date from the day. I do feel that I am imposing and delaying their work, but I really can not retain vital information like this.

Ideally the receptionist would confirm “the five Ws” in writing, “Who, What, Where, When, Why”, e.g. “Jane (Nutritionist) in Outpatient Clinic at 2.30 pm on Tuesday 21 February 2017 for dietary review”. Visual reinforcements, such as the clinic logo, colour scheme and mini-map are great reminders on appointment cards, and help sort them if you have many.

I am the terrible patient of Dr Google, but I find it very helpful to have in front of me some material (from  reputable site such as the HSE, NHS Choices, the National Institute for Health and Care Excellence (NICE) or any of the health insurers. These usually contain an appropriate shared terminology (so I am not struggling to contain my mirth at a grown-up asking about my poo or my “under-bits”) and sometimes labelled diagrams of where and what a procedure involves.

Ideally all consultations will end either with annotations on the notes I bring (or rejecting them if I picked inappropriate guidance), or some visual and written guide to what was said and what is expected of both sides in the future. I will not remember the schedule for any more than one medication, so I need a visual timetable of dose and time; and I will not remember the timing and repetition of physiotherapy exercises without a picture, written count and timetable.

Mixed messages

Nurses and phlebotomists are outstandingly good at communicating touch. They almost always say exactly where, when, how and why they intend to touch people, and indicate the sensations it might cause. A small number of doctors are outstandingly bad and might, for instance, make an announced palpitation of your genitalia simply because they are accessible and look clinically interesting. I find touch, especially skin contact, very distressing. Announcing it in advance makes it bearable and the good, positive-pressure contact that nurses are trained to use is very reassuring and even comforting. (No, I don’t want a hug, or a pat, but continuing to hold my arm a little longer after taking a blood sample is very pleasant).

Most of what happens in a medical context is quite practical and full of overt meaning. There is rarely covert meaning, subtext or body language to take account of. There was one occasion (which I may well have totally misunderstood) when a member of staff said something that was plainly false, asked for my response and then stormed off in a huff. I am convinced that the overt language of her question was entirely different than the unspoken subtext of what she wanted, but could not reconcile the two (apart from the dizzying effect of morphine analgesics!). Obviously I am sorry to have hurt or offended the individual, but equally I don’t think my needs were accommodated in the process.

A big thank you

The huge number of people who have done so much for me over the past few weeks, with smiles and kind words, deserve a massive thank you for all their help and consideration. They were excellent at giving me time to respond, providing written confirmation or repetition of important information and incorporated my wife into the information sharing throughout. They also did a grand job of understanding how Asperger syndrome was impacting on my communication and needs. I am sorry that my retention of names is very, very limited and I can not name all the people who were so kind to me.

Thank you all.