'I had the tea lady from hell. I woke to be greeted by a short, angry person wielding a large trolley'
Four years ago, I had breast cancer. Since writing my last column, it has come back.
Because this has given me plenty of time to observe the NHS 360 degrees from the hospital bed, I hope you will tolerate my writing from this perspective this month.
Lying in hospital, it is obvious that quality of care from a patient perspective relates to three things. The first is quality of relationship. The second is systems. The third is technical skill and equipment.
This is because you need to feel cared for, that things are in control, and that the right things are being done to you.
It is also clear that quality of relationship underpins the other two, because it connects people through all their tasks. Relationship is the invisible yet potent force that forges and sustains action beyond the immediate task to hand.
If relationships are good, then technique is likely to be masterful and systems sustainable, because a connected web of people will pay attention to them. If not, technical skill becomes brutal and systems officious and flawed. Neglect is a random and destructive force that can swiftly wreck systems.
Everything that went right (90 per cent) and wrong (10 per cent) with my transition from 'normal person' to 'person with cancer' related to these three factors.
Most of my NHS experience was superb, from GP reception to oncology ward. I am fortunate to live near University College London Hospitals foundation trust, a major teaching hospital.
I could wax lyrical about so many aspects of the service I received: the skill and kindness of NHS staff, the speed of interventions (waiting only a few hours for complex procedures), the quality of the building and equipment.
For years I've travelled the world as a health policy wonk. I know I would not have received better care anywhere else. The NHS transformed what should have been a crisis into a humane, manageable process.
So what went wrong? Two things, both common. The most obvious was the contrast in quality of care from the contracted staff on minimum wages; the 'invisible' people: the tea ladies, the porters. Employed on sometimes daily contracts, the potential for relationship and contribution from these people is systematically minimised.
Polly Toynbee's book Hard Work: life in low-pay Britain makes this plain and is a must-read for anyone concerned with patient-centred care. These people are not invisible to patients, who face them full-body many times each day.
I had the tea lady from hell. I woke on the first morning in quiet shock to be greeted by a short, angry person wielding a large trolley. 'Tea, coffee, sugar,' she barked, staring angrily at me. I ask her what's for breakfast.
'What there always is,' she shouted. I told her I wasn't here yesterday. 'Cornflake-Special K-Rice Bubble,' she said, flinging a bowl on a tray and pushing it at me. She looked like she wanted to explode. I wanted to cry. I tried to be nice and get her to be nice to me. I failed. Every hour for four days.
As a patient, it is impossible not to be affected by these people's lack of belonging, training, and troubled personal situations. And despite the minimum wages and flexibility that agency contracting allows, it is not clear that the sums add up, given the opportunity cost from compressing so many people into the meanest human package possible.
Having already lost a friend to severe brain damage when an orderly who didn't know the ward mistakenly gave her food (she had initially suffered a mild stroke and had difficulty swallowing), I suspect that the true cost is far greater than simple accounting admits.
It would be interesting to know the cost of medical errors alone resulting from this form of non-joined-up-working.
The second issue, the discharge process, was another example of how transition between systems. hospital and community. still isn't completely joined up. I was surprised by how vaguely chaotic the process remains and by how much it affected me: a patient-doctor who more or less knows the ropes. The key problem is that you are discharged at an unspecified time in a disoriented state with no map to guide you.
You're addled by having sat in a strange bed for a week on new drugs with new routines. You know you have drugs to take. But what more?
On my first night I got breathless. The home oxygen tanks hadn't arrived because ward staff were foxed by the order forms (they turned up a week later).
I was desperate to avoid accident and emergency. I didn't know what my GP's out-of-hours service provided. I knew there were further cancer support teams out there somewhere, but not their hours, phone numbers, or precisely what I could call them for.
Patients need an idiot's guide to going home. It should tell you who to call for what; what to do if a crisis arises; and who does what so you don't spend hours fretting, waiting for the wrong switchboard and bothering the wrong people.
The usual ports of call: 999, GP, NHS Direct are fine when you're well. But when you come home after the awesome spaces of the hospital, unwell and apprehensive about what lies ahead, you need an orientation guide.
A pack of drugs is not sufficient. A condition-specific, up-to-date guide with local phone numbers, names and functions would make a big difference.
For all that, my experience of the NHS in a centre of excellence was, well, excellent. I am left in no doubt that the NHS is capable of the best in the world. God Bless the NHS. I mean it. -
Dr Anna Donald is chief executive of healthcare information provider Bazian.