“The noun doesn’t matter after an adjective like ‘multiple.’ Nothing good ever follows ‘multiple.‘”
~Terry Pratchett, Guards! Guards!
Saw a series of truly shocking tweets at the weekend. Bex, who had just had her third round of major surgery for breast cancer, and still had wound drains in situ, was left to bleed all over herself and the floor of the hospital in which she was an inpatient.
Nurses competent to manage the drains refused to attend her. The ward she was in wasn’t the one where she’d had her operation; the pain and trauma surrounding the surgery had triggered a seriously depressive phase of her bipolar disorder, and she had been admitted to a psychiatric hospital for safety. The district nurses who would have visited her at home to do her wound care refused to come into a ‘ward environment’, and the psych ward staff did not have current training in management of surgical drains. Brain-melt territory. The best the psychiatric ward staff could offer (and in the circumstances, I feel this was laudably creative and person-centred problem-solving) was to escort her on a trip to A&E in the main hospital on the same site, if the district nurses remained obdurate.
“I mean, it’s bad luck to have Bipolar Disorder AND cancer,” tweeted Bex, “but I do, and I should be treated as a whole person.”
J responded, ” I’m slightly astonished. What do they expect you to do precisely, park one to the side?”
To my regret, I was not in the least astonished. Horrified, yes, but unsurprised. Grenouille has been admitted to a ward for planned treatment of one condition, and I have warned the team in advance that they will need to manage what medicine so charmingly dubs ‘co-morbidities’. I have written letters explaining as succinctly as possible what needs to be done for said management. I have done my very best to to get the respiratory team in Admitting Hospital talking to the gastro team in Outpatient Treatment hospital so that Admitting Hospital has its information from reliable fellow-professionals instead of a mere, notoriously unreliable ‘Mum’; only to be met at the ward nurses’ station with blank stares when I tentatively enquired about the gastro provision.
‘Parking one to the side’ seems to be exactly what is expected, or alternatively, “You may have multiple problems, but we are only here to look after one of them”. As though it were possible for G’s other damaged organs to jolly well buck up and work properly again for the duration.
And because, if I’m honest, I wasn’t actually expecting anything different, however much I might have hoped for it, I had come prepared with not only all that I would need to camp at G’s bedside during the incarceration (ten days, as it turned out) but with a great clanking bagful of all the equipment and instructions that we use at home. I had to lodge all this with the ward staff and ask for it to be liberated whenever G needed to use it, but at least it was there and could be used on G’s schedule, rather than on the ward schedule, which in all probability would have caused G to become seriously unwell after a day or two.
In the cot next to G was a four-month-old baby who had spent her entire life in hospital. She lay on her back, staring at a blank ceiling, and was only handled when nurses stopped by to change her nappy and clean her, or change her NG tube and feed bag. Occasionally they would come and prod her – “C’mon lazybones, you need to breathe” – when her desaturation alarm went off. Sometimes the sats monitor would clong for minutes at a time before anyone came, and on several occasions, especially at night, I got up to retrieve an oblivious nurse from the far end of the ward. I worried like hell about that baby, and not only for her physical well-being. A four-month-old needs movement, stimulation, conversation as well as food and sleep. What would all this inactivity do to her proprioceptive system, to her social interaction, to her mobility, later on? My arms ached to pick her up and let her get a different view of the world, to make her part of a normal three-way chat between her, G and myself.
Of course, I didn’t. Even talking to her while standing in G’s bedspace wasn’t appropriate – I wasn’t staff or approved volunteer. All I could do was hassle the nurses when the alarm went off, and I tried to be choosy about when I did that, because I noticed that if the nurses had to respond too frequently, they became impatient – with the baby.
Near the end of G’s stay, the baby’s parents came to visit her. They picked her up as soon as the nurses would let them, and cuddled her for their entire visit. Tears ran down her mother’s face as she and her daughter gazed into one another’s eyes, while the father talked softly to his baby and stroked her cheeks and toes. The baby waved her arms and made little cawing noises. At one point, the mother looked across at me and apologised for causing a disturbance. I told her those were the sort of noises it did my heart good to hear, and asked if I could get them drinks and some food from the parents’ room so that they didn’t need to waste any of their precious cuddle time. Two orange juices and a plate of sandwiches later, the mother had confided that they could only visit once a week, owing to the demands of work, their older children, and the prohibitive costs of travel. “We just want to get her home, so I can do this all day long”, she said. I completely empathised. The duration of her parents’ visit was the only normal interaction that baby had all week. Two hours out of 168.
So what stops hospital health workers from truly caring? After long observation and much thought, I think there’s a relatively minor element of professional high-handedness. I’ve encountered it most acutely with junior doctors, over-eager to bolster their standing, and some long-serving ward staff who expect everyone to fit into their standard model of ‘how we do things here’.
There’s definitely a problem with professional demarcation, aka the silo mentality. As parents, we work across all the health specialisms (plus the education, therapy and care ones). We do it mostly unpaid, mostly self-trained-on-the-job, and on the whole, we make a bloody good fist of it. So it is hard for parents to cut much slack to trained and qualified professionals who can’t or won’t do the same, those who project the reverse-whistle, more-than-my-job’s-worth attitude, even if they don’t actually inhale sharply or say anything. The sort of person who wants you to go home and get yet another referral from your GP, rather than referring you directly across departments within the hospital. At the end of the day, sunshine, my child’s needs trump your professional etiquette in all suits.
But the biggest problem is the dire interaction between staff numbers and time. If a nurse is expected to care for, say, eight patients over a twelve-hour shift, that means that at best those patients can only expect, on average, three hours’ direct care in 24. In practice, they won’t get anything like that – there is paperwork to do, a telephone to answer, visitors to admit, handovers to be managed. Even if there is a ward manager charged with ordering supplies and overseeing the domestic work, the nursing staff still have to spend time on liaison. No wonder they don’t have time to read letters from mothers of patients who have not even been admitted yet. No wonder that as long as a baby is still breathing, then she can be classed as No Further Action Required – and that if she fails to breathe too often, she will be treated as an inconvenience.
And I will never understand how a Mental Health Trust that couldn’t make time and provision to prevent a healthy eighteen-year-old from drowning can find the time and the money to invent reams and hours of spin and lies.