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Blog Mary Agnew


My patient experience

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Regular readers may have noticed the blog falling silent for a while, perhaps assuming that I’d gone off the idea or had simply been too busy. In fact, I’ve been having emergency surgery for an infected appendix – a surprisingly common if strangely old-fashioned problem – and discovering that recovery was not quite as speedy as I’d assumed. Even now, over a month on, I still feel terribly tired much of the time, although admittedly that could relate to it being a particularly demanding time for the team at work now…

My children were surprisingly unfazed, even excited, by the whole appendix drama, aided by familiarity with the 1939 picture book classic, Ludwig Bemelmans’ eminently quotable 'Madeline'. In this, the fearless Parisian heroine spends weeks in hospital (she had her first visitors on day 10), proudly shows off an impressive scar, and is the envy of the other girls for the special treatment and toys she receives. Three quarters of a century on, treatment has of course advanced tremendously – my scars are small and I was home less than 48 hours after surgery. But I can’t help but wonder whether the patient experience has evolved quite as impressively?

So, here are some reflections on my experience, although I dithered long and hard about whether to share these here, faced with an uncomfortable collision of the work and the personal.

Though no stranger to hospitals, I was reminded of how it feels to be in serious and constant pain, that horrible combination of desperation, vulnerability and just wanting to curl up and hide. I was struck by the strange anonymity and powerlessness that comes with being wired up to drips and monitors and having all sorts of clever medical things done to you.

Much of the care was really great: the paramedic team, arriving minutes after a call to NHS 111, who were professional and gently persuasive that this was indeed a medical emergency despite my protestations; the calm and friendly team of anesthetists; the nurse in the recovery room who talked me through how everything had gone; the fantastic nurse in charge of my care on the first night who was caring, authoritative, friendly and spoke to me person to person; and indeed my own GP when I developed an infection several days later.

I also saw first-hand the challenging environments staff have to work in, particularly in A&E with new patients arriving all the time, some of whom were very distressed or confused or insistent. The man in the next bay, racked with toothache, became increasingly angry and aggressive with staff who tried to encourage him to go to a dentist.  The skill of the doctor who eventually calmed him down was extraordinary, but it was easy to see how scary and unpredictable the situation must have felt for staff.

On the ward, the care was far more mixed. It was difficult to identify who was in charge and know who to ask for what sort of help. Visiting families of the most unwell patients often struggled to find answers to their questions or find out what the doctors had said on ward rounds. There were repeated confusions about who was and wasn’t nil-by-mouth. One patient had to ask several times to get the name above her bed changed from that of the previous patient. There were frequently significant delays in answering buzzers, helping people to the toilet and providing pain relief. There was a striking difference from shift to shift in the quality of team working and the ‘feel’ or culture of the ward, with one night in particular feeling chaotic, noisy, frantic, with staff seeming too stressed and busy to help.

Perhaps my experiences were different because I saw it all through a ‘Francis lens’, or perhaps the distorting haze of pain, anxiety and morphine meant I dwelt on the negative. The ward can be a lonely and scary place to face the 4am demons. In parts excellent, but in parts pretty dismal, and overall quite disjointed, I couldn’t help but feel there was a long way to go for this ward to achieve consistently the fundamentals of care and to ensure people felt safe and welcome in their hospital beds. 

Shortly after my return to work, I saw a presentation from University College Hospitals London NHS Foundation Trust on their new patient whiteboard system. This records, in discussion with the patient, the patient’s preferred name, their named nurse for that shift, the consultant whose care they are under, and their predicted discharge date. A series of magnetic symbols provide key information about their care – a forget-me-not for a person with dementia, a glass to indicate someone needing help with feeding, NBM for those currently nil-by-month. At the beginning of each shift, the nurse taking over the person’s care goes to the bed to greet the patient and update the board. A simple system, introduced within only a few days at UCLH, but offering significant solutions to better communication at the bedside, more effective coordination of care, and helping staff, patients and families to work together more effectively.

Professor Michael West and his team of researchers recently published the results of a large, multi-method four-year study of Quality and Safety in the NHS. This found many inspiring ‘bright spots’ of high quality care, but considerable inconsistency and ‘dark spots’ of substandard care. The study highlights the fundamental importance of good staff support and management, including meaningful appraisal, and the direct relationship to patient experience, safety and quality of care. Their extensive research suggests the blueprint for transforming NHS culture includes clear goals for improvement, strong patient engagement and voice, team-working, and crucially supporting, respecting, valuing and developing staff, and engaging them in developing their organisations.

I’m a huge admirer of the NHS and its staff, and think a significant shift in culture is already underway – of openness, transparency, a clear focus on safety and on really listening to and learning from patients. But my stay offered a reminder that this is a major transformation that needs to reach each and every service, each and every shift, and each and every member of the healthcare team.

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  1. Comment by James Munro posted on

    Hi Mary
    Thanks for sharing this - as one of the team here at Patient Opinion, your mixed experience sounds very familiar to me. We hear very similar accounts frequently.
    Your focus on the need for openness, transparency, and listening to feedback from patients is (obviously) very close to our hearts - and as you say, the culture change that we now see in progress needs to occur in every team, on every ward, for every shift.
    Have you posted your story on Patient Opinion? We can get your feedback to the providers concerned without identifying you, and that would be a different contribution to the change we all want to see (in addition to the big contribution you are already making!).
    If you do this, let me know whether Patient Opinion works for you, and how it felt too.

  2. Comment by Mary Agnew posted on

    Hi James. I haven't posted it on Patient Opinion (as yet anyway) as I gave full feedback to the Trust via PALS, and I've subsequently met with them to discuss it. I also met Paul Hodgkin recently and was really impressed by the work Patient Opinion is doing. I'll definitely try posting next time. As a postscript, I had to return to their A&E with my son late one night last week (he's fine). He was treated brilliantly and filled in their feedback form (unprompted) with 'staff were great'!

  3. Comment by Karen Taylor posted on

    Hi Mary - reading your story reminded me so much of my own experience of appendicitis with similar very varied levels of care from shift to shift on the same ward - showing just how difficult it is to rate a hospital and even like you with great familiarity of the system being a patient is so disempowering - in my case they took 4 days to diagnose and then 4 days to try and reduce the infection before bring me back a week later for elective key hole surgery - the latter experience being again very different - quick efficient professional albeit difficulties finding me a bed post surgery. But the delay in diagnosis cost at least 4 extra days of hospitalisation plus a second admission and an expensive journey through the diagnostic pathway starting with X-rays on day 1, Ultrasound day 2, MRI scan day 4 before diagnosis. All the time receiving pain medication and then staff being surprised when asking me to rate on a scale of 1-10 my degree of pain which went from 8-10 when medication wearing of to around when medication working - not really sure what that was all about. I couldn't help thinking a quicker diagnosis and treatment could have saved me and the hospital a lot of time and resources ( in my case extended absence from work!). Part of the impetus for my recent report Improving services through earlier diagnosis. Good to know you're well.


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