Anything but yellow! Talking chemo wards

St Paul's CathedralIt is the first week of December 2012 and outside, in the sharp, wintry coldness, Christmas twinkles promisingly from shop windows and the ethereal dome of St Paul’s Cathedral casts its venerable shadow with implacable grace. It doesn’t exactly dwarf its contemporary neighbours any more, but they will never match the imposing, enduring sight of it caught as you round a street corner.

St Bartholomew’s Hospital sits a few streets behind, completing the triangle with the Old Bailey, and I am inside, folded into a large chair that has sufficient moving parts to require an operational console, a bit like the ones on massage recliners or swanky airline seats – not that I’ve much experience of either. Not all the chairs here are quite so well-equipped, however, we are not full this morning so I have been able to snaffle a good one and am, as I write, curled up, cannulated and with carboplatin running happily through my veins on its poisonous mission of destruction. His equally aggressive partner, docetaxel, will follow in a few hours.

I say not full, but we are very low on nursing staff today. I say write, though technically I’m tap tap tapping on the iPad as its much easier than use a pen while I have a needle and a drip stuck in the back of my hand. I say mission of destruction, but it’s also one of saving my life. Again.

Of the four times I’ve been diagnosed with cancer since 1980, this is my third chemo regimen, and I’m nearly halfway through – so I’ve spent quite a bit of time staring at chemo ward walls over the years, and watching their micro world go round. And what with keeping the odd friend company during the long boringness of their own chemo in other hospitals, for a little while between cancer number two and three I was convinced that every such ward in the country was painted yellow.

The new Paget ward in Bart’s Hospital is a beautiful thing to behold, as chemo wards go. Set in the lofty heights of the King George V building with spectacular views over the City, it is totally dedicated to the treatment of people with cancer, and it boasts a separate reception room, several clever treatment bays designed to help make a warm and intimate environment for chemotherapy delivery, individual rooms where a patient can be treated on their own, and myriad store rooms, preparation areas, alcoves with banks of consoles and equipment vital to our care. Everything is clean and shiny and still pretty new – and it all looks quite impressive.

But I really don’t like it because it just doesn’t work.

The NHS is more short of staff than I’ve ever experienced it, and chemo wards across the country are working at capacity and beyond. The new Paget was probably modelled on some idealistic notion of chemo delivery but I have to wonder how many practising patients, oncologists and specialist oncology nurses were consulted in it’s design, because it simply makes no sense to me. I’ve had plenty of time to observe and think about this and here’s the thing I don’t get. Spreading too few staff among so many separate areas is simply inefficient. Nurses cannot see around corners any more than they have eyes in the back of their heads. There usually aren’t enough of them in the ward, and certainly not enough in any one bay all the time. I have watched a single overstressed nurse run, quite literally, from one to another of six patients, the various stations he has to consult to do his work, and back again. For hours, endlessly, and without a break.

Sometimes people are really sick and need to be treated in a bed so its nice, I guess, that here there are several quiet rooms away from everyone else. But such privacy and peace comes at a price, for they are even more isolated from those too few nurses. As for the rest of us in our little bays, well, guess what, talky patients still talk and the quiet ones stay quiet no matter what the space between us.

Oncology nurses are the experts when it comes to getting those live-saving drugs into our bodies – for me, the skill test is always the cannulation because I am so hard to do (veins are buggered) and these guys usually get it the first stab. Believe me that is nothing short of miraculous and my relief is physical. Like midwives, this is what they do and they are very, very, good – but they seem to be the only clinicians we ever see, there is no-one talking to us about diet and nutrition, the anti-emetics are standard. Not every one tells us their name, remembers ours, or explains what is happening unless they are asked – there simply isn’t the time. Our oncologists aren’t here, neither are our specialist nurses from the breast cancer clinic – we usually won’t see either of them till right before the next treatment in three weeks time. Everything from blood counts to dosing adjustment to next appointment is communicated by computer. As long as they’re working.

Staying hydrated is a must, yet there is not a water butt in each bay, and new patients are not shown around so they can find these and other basics without disturbing nurses busy nursing. So we manage by helping one other. We show each other where the loo is, how to get water, tea, when the sandwich trolley might appear, and how to turn the beeper off when you unplug the drip-pole/console from the wall. We are attached to these for hours, obviously, and have to pee about every five minutes – but the only beeping the nurses need to know about are the ones that mean the meds are close to finishing, or done. Well, the talky ones ask/help, anyway. The quiet ones better hope they’re sitting near one of us and can figure it out.

It was all rather different in 1999, when I had my first breast cancer and my second chemotherapy.

yellowI was treated then in the OLD Paget ward – a traditional U-style where, when it was used as a medical ward, beds would have been arranged around the outside and inside of the U, with the nursing station at the top so they could see down both sides. It had been simply and (I am guessing) inexpensively converted for the purpose of delivering chemotherapy, and painted the colour of a thousand canaries. Let me explain why it worked, despite the pervasive yellowness – never a good colour for people prone to throwing up at the slightest provocation.

Two thirds of the ward was seating, one third kept for beds, there was also one small room with a bed, a tiny office where the onco on the ward saw you, and one spare room that anyone else could use if needed – often the wig chap for a fitting, or clinician talking privately with a family. The beds on the ward were only visible to a few of us at the far end on the same side, and had curtains of course, so fairly private in relative terms. Talky patients talked and quiet ones were quiet, just the same as now. But we could see each other more and you’d be surprised how much you learn just by looking. Its more than the practicalities, you take strength from witnessing the courage of others and feel compassion when someone isn’t doing so well. Most important, though, the nurses can see you. They don’t have to go running between different patient, work and store areas. They can respond more quickly to stress or emergency, hear you call or see you are uncomfortable. And you can see them, which sometimes, especially for a patient new to things, can make all the difference between comfort and distress or panic.

They knew our names – and we knew theirs. Hell, most of us probably knew the names of their husbands (or wives) and half their children too!

Oh, and we met other specialists on the old Paget. Dieticians and nutritionists, Pharmacists who would concentrate ONLY on your side effects and fine-tune medication until they’d got it right for you. They’d all seek you out the first few treatments, sit with you, talk with you, make sure everything was running OK, and would always stop by if you needed to ask anything subsequently. The wig chap would come and let you experiment. At least one oncologist was there all morning. When was the last time your consultant actually visited a chemo ward let alone administered it? Don’t get me wrong, oncology nurses will probably win the cannulation test even with their eyes shut, but I don’t believe a consultant should be this far removed from the administration of their treatment.

My recall of the outpatient ward where I had chemo for Hodgkins Lymphoma in 1980 is more hazy. I remember a depressingly dismal, dark place, with yellowing peeling walls and plastic-covered chairs that stuck to the slightest bare flesh and that sighed or squeaked when you moved. We sat or laid on a bed for our treatment, but you know what, it was given by our consultants, residents and housemen.  And I think it made them better doctors.

I believe oncologists are the alchemists of practising medical scientists – our lives depend upon them, for their close observation and ability to think beyond the Standard of Care. But treatment is much more than ordering the drugs to be used and keeping up with the research, though god knows that’s important enough. It’s about observing physical and emotional effect and impact closely, knowing your patient intimately. Knowing when something isn’t quite clicking and questioning deeply. Patients can’t always articulate what you need to know, without good probing and what your eyes are telling you first-hand. They don’t know what to expect anyway, and are often too full of fear and doubt, or too stoicly determined to push on through regardless. Sometimes they just don’t know themselves well enough to know when something is wrong. Or they forget to tell you because that might be in a clinic appointment several weeks away.

I guess what I’m getting around to is shiny new isn’t always better, even if it isn’t yellow. I guess what I’m asking is how IS new Paget more efficient? How does it help our medical team care for us and communicate with us and one other, better?

I am fortunate enough to be treated still by an oncologist who was on my team when this all started for me back in that grim old place, and I count myself phenomenally, possibly uniquely, lucky in that. I understand the hours the doctors work, and I have seen him on wards at the crack of dawn, at lunchtime, and last thing at night, having conversations with patients who, for one reason or another, were on his mind. He would slot these things in between endless hours in clinic, formal ward rounds and every other doctoring thing a doctor does to stay good enough to keep a few more of us alive every day.

Please, give our nurses and oncologists the space to stay closer to us. Think, no really REALLY THINK, when designing spaces in which such doctoring and patienting is done. We live in the real world, in the real NHS. This is where resources and staff will continue to be cut while the incidence of cancer increases. Patients suffer. Care circles are not complete. Care Pathways are littered with holes you could drive a truck down.

Ward design needs to put the people who use them front and centre, but equally, recognise the world isn’t perfectly staffed or perfectly run. It needs to work with the utmost efficiency on all the bad days, enabling the staff we have to care for us properly, safely, and with compassion.

On the plus side, of course, no canaries died in the building of new Paget – and for that, I am most grateful.

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One thought on “Anything but yellow! Talking chemo wards

  1. I found this interesting and there are parallels with maternity wards which have also introduced individual rooms and have similar issues. I think that, like your other friend who commented, from the start, it is not that clear that you are telling stories of different times with cancer. Breaking up the sentences and sections a little may help too (though I am guilty of long passages too). Use of fragments (like this: The patients suffer. The care circle is not complete. The pathway is littered with holes you could drive a truck down.) is very effective.
    It is personal and also has power and passion. I hope it helps you get closer to what you want to do with this site.
    Anita

    Like

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