When Experience Counts for Nothing

Many of us with long-term health conditions, whether common or rare, come to know an awful lot about our conditions and our bodies.

In many ways it’s a little like the experience of a car that my grandparents used to drive. She was known as Little Yellow, named for her external colour; her replacement, many years later, was known as Little Vomit, also a reflection of the external colour, or at least my grandmother’s opinion of it. Anyway, Little Yellow was a teeny little thing with slung canvas seats, perennially filled with grandchildren and sand. One thing that Little Yellow didn’t always like was starting. It took a great deal of experience with the 2-stage choke (perhaps I’m showing my age, or at least Yellow’s age) and knowledge of just how much coaxing on the accelerator pedal was enough and how much would just flood the tiny engine, at which point it was best to go for another swim, or to get another ice cream, rather than continue to try to start the car.

My body, similarly, does not always like to start. I used to describe myself as a ‘morning person’ – now something that gives rise to a slightly cynical chuckle. My blood pressure tends to be very low in the mornings, making me feel quite wobbly. My joints are also sore in the mornings (oh, hellsticks, what am I talking about? My joints hurt all the time). My joints hurt in the mornings because they slide in and out of socket, or can ‘hang’ out of socket for extended periods while I am asleep and all my muscles are too relaxed to hold my joints where they should be held (in the absence of competent ligaments, which do this for you, ‘normal’ people). Trying to get up too quickly is basically the same as saying, “I feel really optimistic today, so I need to collapse onto the floor to reconsider my attitude.” It’s the Ehlers-Danlos equivalent of time-out on the naughty step.

At the best of times, I take a lot of medication. I try not to count how many I take at the worst of times. Currently, I take somewhere in the region of 25 different medications on a regular basis. In the mornings, with low blood pressure that clouds my thoughts and keeps me lying flat for fear of enforced lying down (fainting), and joints that are weak and painful, it can take two hours just to unhook IV fluids and tube feed, hook up to daytime IV fluids (same fluids, just in a separate bag; no idea why), prepare and administer various IV, injected (with a needle), stuck-on, rubbed in, liquid (via j tube), dissolved in the mouth, or inhaled medications.

If I need to have a shower, it can double the length of the getting up process. Low blood pressure plus hot water is not a good combo (hot water makes the veins dilate, so they allow more blood away from the brain and heart), and I no longer feel safe showering when I’m alone in the house. It’s one thing to be scooped off my own kitchen floor at 3 am by paramedics because I got dizzy, fell over and dislocated my shoulder and wrist; it’s quite another thing to have that same scenario repeated when I’m half-clean (or half not, depending on your particular way of seeing the world), covered in soap, wet and naked.

For reasons that I hope are now obvious, I try not to schedule morning appointments. I’m due to have an operation in a few weeks, and I have to be ready to leave via patient transport (up, showered/dressed, and appropriately medicated) by 5 am. That means I need to get up at 2 am, optimistically. If I didn’t go to bed so early, I’d say it was hardly worth it!

I didn’t mean to write any of this extra detail (sorry). My original point, in case you’ve forgotten, was that people get to know their own particular idiosyncrasies, and learn to modify their environment accordingly. Needing several espressos before anyone can talk to you (or you’re capable of responding) is a common ‘normal’ world example, with coffee-related paraphernalia in the house (or choosing a flat above St*rb*cks) a related environmental adaptation.

Hospitals are often designed to meet the needs of as many people as possible: staff, patients and visitors, and sometimes end up suiting nobody perfectly. In this system, it can be really hard as a patient (often viewed as the person who knows least about their condition) to be assertive about their individual needs.

Many of the nurses on night shifts like to try to get tasks done in order to lighten the load for the day staff who replace them. The intention is admirable, the reality sometimes less so. In reality, ‘getting things done’ can involve putting all the lights on at 5 am and waking patients in order to check their blood pressure and stick pins in them to see if their blood sugar is ok. Quite apart from the fact that many people have low blood pressure at that time of the morning (resulting in lots of scared nurses when they check my blood pressure at that time), it’s not very helpful for people recovering from illness to have their precious sleep interrupted. Additionally, shaking me awake (I sleep with headphones in or my non-deaf ear in the pillow when in hospital) can dislocate or otherwise injure my already-sore joints.

I’d love to see a health system in which patient experience – human experience – is truly valued. I would love patients to be able to choose what time they want to sleep, eat and drink. I would love options for those with dietary restrictions to be more widely available. I would love it if there were some way of making it easier for patients and their friends and families to make the hospital environment more amenable to their own needs, whatever those happen to be.

I’m delighted that so many hospitals allow me to display (LOTS of) photographs and cards, delighted that they sometimes allow me to use my own pillowcase, and bring my own herbal teas and proper-ish coffee. I’m thrilled to report that in the 3 decades that I’ve been an NHS ‘frequent flier’, many hospitals have made great strides in improving patient experience. I remember having an operation when I was quite young (not my first surgery, but I was still under 3 years old) and remember that my parents were not allowed to stay with me outside visiting hours (which used to be pretty much just that – an hour or two once or twice a day), and I remember being intimidated by the long ward and high, narrow ‘big girl’ bed. Things have come a very, very long way since then!

Now, I’m often allowed to administer my own medication, sometimes even intravenous medication, without a huge fight (that seemed like an impossibility back in the ’90s). Not only that, but many of the nurses react with pride that I’ve been taught to look after my own care so well, and encourage me; sometimes they even ask me to talk them through the techniques that I use (I use a sterile technique of Both Hands Clean, as opposed to the more commonly used Clean Hand/Dirty Hand – more on that in another post) or ask to watch me prepare and administer my medications, to learn, rather than supervise.

Every time something like this happens, I’m so grateful to those nurses (and sometimes doctors and pharmacists) who are willing to look beyond the hospital stereotypes and see the things that I do well, or the things that I know about myself, or even the things that make me who I am.

You may have read about Dr Kate Granger’s remarkable positive campaign in the NHS, Hellomynameis – it’s a simple way to remind busy medical staff that they usually know a lot more about the patient than the patient knows about them. By offering their name at the start of any interaction, staff can make patients feel more confident, more human and less alone. This campaign was launched in 90 hospitals and NHS trusts across the UK yesterday, and I’m so proud of Dr Kate and all those who have supported and encouraged her.

I spent yesterday in my local A&E department (another other post), and almost everyone greeted me with a smile and offered me their name, from domestic staff to consultants, technicians and porters, junior doctors, nurses and admin staff. It makes such a difference. One doctor even asked how I’d met my husband (I try to throw out little reminders that I’m not just a rare disease in a bed, so she was responding to that). It pretty much made my day, along with the fact that she let me look at my own blood test results and talked to me like an educated human. She gave me the tiniest of ‘looks’ when her more senior colleague (who has met me numerous times and should have known better) tried to explain to me what blood pressure is. Having studied both medicine and physics, I know a bit about blood, pressure and even both together. I could have hugged this doctor, who didn’t know about the education, but had picked up that her colleague had pitched his ‘little talk’ at the wrong level. I don’t know if it’s that my expectations are too low from a whole life spent in close contact with the NHS, or if those tiny little changes really can change our perceptions so drastically.

Maybe this calls for a wider social experiment: smiling and being kind and aware of our fellow humans in order to change the world. I don’t know. Maybe I’ll try it. For now, though, I’ll continue to be a cheerleader of #Hellomynameis (the Twitter stream from this hashtag is inspiring and heartwarming, if you’re interested, as is @grangerkate herself), and continue to try to pluck up the courage to advocate for myself when necessary.

More soon, I promise!

Things have come a long way since I was this age (this is about the age I was at the surgery mentioned above)