This patient’s experience

I did not fasten my seatbelt. It was 4.30am on a Thursday morning in the middle of the summer 2013 heat wave, and I was in the back seat of a London cab in the late stages of labour. The cab driver was appropriately silent as he sped to our local hospital.

I had watched One Born Every Minute and kept my eyes open; I’d attended NCT classes and yoga workshops; I’d done my reading. None of this really prepared me for the extreme pain and joy involved in giving birth to my first child, but it helped a bit.

What I was absolutely unprepared for was the experience of being a hospital inpatient. Although I had had a straightforward birth, I had lost a lot of blood, and as my blood pressure dropped and my heart rate became too high, I needed a blood transfusion, some surgery and ongoing monitoring. There was nothing exceptional about this experience, and yet, in spite of nearly ten years’ experience in health services research, I was shocked by how intensely vulnerable and terrified I felt as an ill person receiving hospital care.

That care was both truly excellent, and very poor. Some staff were profoundly kind and others bordered on hostile; problems were caught through meticulous examination, and potentially harmful errors were made because of inattention. The atmosphere of the wards varied significantly; some staff seemed well supported and motivated, while others appeared highly pressured and disengaged.

The week after my discharge I made some notes on what for me had made for ‘good’ and ‘not so good’ care. Here they are in their original form:

The good:

  • staff coming to say goodbye at the end of their shifts and checking in on my progress after ward transfers
  • staff listening and responding to my concerns and explaining options and decisions
  • staff being meticulous and as a result discovering a previously overlooked problem
  • a nurse holding my hand the whole way through my session in theatre 
  • staff expressing sympathy 
  • staff sounding confident, authoritative and reassuring – making me feel cared for.

The not so good:

  • not being offered food for very long periods of time and meals not turning up
  • staff repeatedly remarking on my too-high heart rate to one another in hearing distance but not talking to me about it
  • no midwife assigned on transfer between wards, which meant my medication was missed – something for which a nurse initially tried to blame me
  • staff getting annoyed with one another in the presence of me and other patients – scary when you're feeling so vulnerable 
  • staff being very clumsy with equipment before a stitching procedure
  • very poor management of patient flow in the postnatal ward which meant queues for beds and for discharge
  • being told-off for staying in bed and not moving around after theatre, having been given no advice about the importance of getting up and moving around.

With my professional health policy hat back on, I am struck by how many of these points relate to the emotional aspects of care, and what a significant impact that had on my general sense of wellbeing. I can also see the familiar themes of the importance of good communication – both talking and listening – between staff and patients and the need for effective co-ordination between different hospital wards (never mind between different services and organisations). But they mean more now: I feel I better understand how much these aspects of care really matter.

So how would I rate my care overall? Would I recommend the hospital to a pregnant friend? Giving an overall satisfaction rating to services at the hospital would feel pretty meaningless. In fact even responding to the more detailed and relevant questions of the NHS maternity survey about ‘information and explanations’ and ‘kindness and understanding’ would be tricky in the context of such variation in care within, let alone between, wards. My care varied significantly by shift (the night staff seemed to be much less skilled) and the particular combination of staff working at any one time. In the last national survey, postnatal care at that hospital received 7 out of 10 and was deemed ‘average’. I really hope the hospital is getting a richer picture of patient experience through PALs (my chosen route of feedback), patient complaints and its own monitoring systems.

Back in August 2013, as my partner and I walked with our new baby down the stairs and towards the daylight, a member of staff appeared panting behind us: ‘You can’t leave yet!’ Although I had been formally discharged, she told us that our son still needed to be signed-off by a paediatrician, and we would have to return to the ward to wait. I looked furtively at the remainder of the flight of stairs and actually considered running. Physical weakness, extensive stitching and, of course, concern for the wellbeing of our son, stopped me. But I hope I will always remember how I felt at that moment, and will be more mindful in my work of the profound and complex emotional and psychological effects of ‘illness’ and ‘care’, for both patients and staff.

Since writing this piece, the head of midwifery at the hospital got in contact in response to my feedback. She apologised for the poor aspects of care, detailing changes they have since made to the service (including staff training and restructuring), and committed to using parts of my story to remind staff about the importance of good communication and sympathy. She sounded like she really cared, which meant a lot to me personally, and knowing that someone there thinks that the bad parts of my treatment were unacceptable makes me a little less scared for the next time I find myself in hospital.

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