My father underwent major lung surgery just over a week ago. He was diagnosed with primary lung cancer in March as a result of a follow-up CT scan from a previous cancer. If he hadn’t had cancer before, they probably would have caught this cancer too late: the two are unrelated. Seems odd to think about the first cancer as somehow beneficial. Anyway,after a battery of tests, the surgeons at the Imperial College Healthcare Trust decided to remove part of his right lung. My dad is 83 and having been through bowel cancer surgery only a year ago, we were all dreading the emotional and physical roller-coaster of this new cancer and another major op.
He’s fairly spritely my dad, no marathon runner, but slim and walks around easily. For both diagnoses, he very quickly accepted the situation he was in and the recommendations for treatment. Motivated by being able to continue enjoying his painting (a hobby he found in his late 70s) and,from what I can see, a general determination to get on with life, he is always described as a “gem” of a patient. Quietly he’d sit whilst tubes were removed and blood was taken. Always joking with the nurses ‘Lydia looks after me’. I think he’s either charming them, wants to show his appreciation in the way he can, or is just being his sociable self. Haven’t really worked out which yet. My mum and I always had the urge to look after him whilst visiting, wanting to tuck in his blanket or feed him his water, but he is independent, certainly not wanting a fuss or any ‘Molly-coddling’; he always wants to do things on his own.
So whilst I was there, I was asked to help my dad with a satisfaction survey, on one of those little palm pilot-type gadgets. I thought, this will be quick and easy because I am sure, apart from 1 or 2 minor events, he is delighted with his care and also I spent years working in conventional market research, so I can help him interpret it. Except it wasn’t easy and I think the NHS now has misrepresentative info from my dad’s experience.
I wasn’t really supposed to be doing it. I think he was either supposed to do it himself, which would be far too confusing (technically using the gadget, ability to think lucidly in hospital, generally not understanding it, slightly shaky hands from the op, etc) and he’d therefore probably drop out . Or, if the nurses were supposed to facilitate questions, then they’d misinterpret what he thinks because it is difficult for him (or many people) to be clear and single-minded about answers unless they are extreme and especially if it is 5 days after an op.
So I took him through the battery of typical satisfaction questions
How satisfied were you with the treatment from the nurses during the day?
- Extremely satisfied
- Somewhat satisfied
- I didn’t need treatment during the day
- Don’t know or can’t remember
- Not satisfied
NB I can’t remember the exact wording of answers, but they were more or les like the above
And so the questions went on….
- How satisfied were you with the treatment of nurses during the night?
- How satisfied were you with the treatment from doctors during the day?
- How satisfied were you with treatment of doctors during the night?
- Did the nurses looking after you explain the treatment being given to you?
- Did the doctors looking after you explain the treatment being given to you?
- Did the doctors explain the treatment being given to you in a way you could understand?
- Did the doctors talk in front of you as if you weren’t there?
- Did the nurses talk in front of you as if you weren’t there?
- When you needed something how quickly did someone come after you pressed the call button?
- How would you rate the quality of the food?
- Were you on a ward with members of the opposite sex?
- Was there enough space around your bed?
Etc for around 10 minutes I guess
So, for quite a lot of these questions, my dad would say to me “what are they trying to get at?” or “I really don’t know what they mean”, “when they say treatment what’s that about? I’m not sure”. He’s not confused. Treatment, just sounds like an odd, clinical and somewhat technical word when you are talking to someone in this context. And I know from being by his bedside, visiting for 3 hours at a time, 4 days in a row, that he did have a rich and deep experience of his time on that ward and with the people looking after him, enough to express answers to all of the questions being asked and provide helpful feedback.
The NHS is missing out on the feedback from an extremely satisfied patient, because sadly his answers are littered with too many don’t knows than are necessary. What would have been more helpful, or at least a support to this satisfaction survey is if there could have been some detailed open qualitative, exploratory research done at the same time. And even better if this was followed up a second time once he is home. I am sure the NHS would then get some excellent and very useful findings. They’d certainly see what a life-line the NHS has been to my dad, what a satisfied and appreciative patient he was. And also other insights such as the importance of the patient’s mind-set, acceptance of the current situation, motivation to progress, ability to trust care-givers. Think what service innovations could spring from patients attitude to being looked after (seriously, you’d be surprised how cantankerous and ungrateful some patients are, like it is the nurses fault they are il!!). My dad would be a great role-model for the perfect attitude to post-operative care, such a shame he couldn’t express that in the satisfaction survey.