Saturday, June 16, 2007

Listen to Patients Stories

I always said I learned more from patients and their carers than I ever did from bosses in my NHS career.

I am happy to say that learning from patients continues in my new work situation.

Two wonderful and touching examples in the last two days reminded me of this.

On Thursday I spoke to a young man in his thirties (I will call him 'Tom')


We were sharing our mutual love of football. Turned out he was a West Ham fan. I digress…

Tom told me how he had suffered intermittent shooting pains down his leg for a couple of years and had been told it was sciatica. He was on prescribed tablets to reduce inflammation and it seemed to work as he found that whilst taking the tablets the pain eased. When he stopped taking the tablets the pain returned. He played football and when his playing season ended a few weeks ago he decided he didn’t really want to spend the rest of his life on tablets. Tom decided to ask his doctor if there was anything that could be done. His doctor arranged for him to have a scan and it was discovered he had a rare cancer of the spine that needed surgery. Tom was rushed in as an emergency – had major surgery that lasted almost 7 hours - and here he was, back at work less than five weeks after his surgery. Tom told me he hopes to play football again and his doctor has said that should be possible.

Lesson – Respect the health professionals but also look after your own health as well. Always ask questions and don’t necessarily accept the initial diagnosis.

Then on Friday I had another powerful lesson.

I was facilitating a really interesting discussion with a group of 10 members of the public about healthy lifestyles and we were debating the controversial topic of smoking.

There were 3 smokers among the 10 people around my table. Those 3 people were understandably vocal about how everyone has the right to choose whether they smoke or not. And of course most of us agree with individual choice.

One of the other 7 people quietly made a very profound statement that affected us all. He is a man in his 70’s (for the sake of this story I will call him Bill)

Bill said he had given up smoking 40 years ago and we were all shocked when he calmly said, ‘But it was too late. I have cancer.’

Once we had recovered from this shock - and I had allowed the necessary respectful silence having heard Bill’s emotional statement - I decided to ask Bill a question.

I said ‘Bill, thank you for sharing that with us, what advice would you give to anyone who is a smoker?’

Bill replied with just one word ‘Stop’

That is all he said.

Bill's eyes moistened but he held his emotions in. It was enough for us all to know that here was a very strong man who now regrets the damage he had done in his earlier life. He was not looking for sympathy.


40 years ago smoking was not only acceptable – it was positively encouraged through glamorous advertisements.

Lesson - I pray the 3 people who smoked really thought hard about Bill’s experience and his one word of advice.

Real life stories from patients are just wonderful. There simply is no better way to learn about healthcare.

The job description of every Chief Executive in the NHS should contain a REQUIREMENT to listen to patient’s stories. This should be compulsory and regular – a minimum of three personal stories every week.

2 comments:

Richard said...

Trevor - All CEO's would hear more than 3 patient's "sick role" stories per week, trust me!

Do they listen? Those who still care certainly do! Can they fix the problems that lead to less than excellent delivery of patient care - no!

Those who care would if they could - but they are realists so they settle for doing much less than that and feel lucky if they achieve their goals.

Simplicity and health care probably comes down to the actions of each and every individual patient - it is in the patient's hands but not within their control.

Once they enter "the sick role" they are at the mercy of their chosen practitioners unless and until they have an advocate. If their advocate is a family member then, in many instances, little changes in terms of the patient's range of potential outcomes.

What they need is a strong and an influential advocate. Where to find such a person or such a mechanism? You find him or her or it (ie the knowledge we need to challenge any prognosis) when we are "well" not when we are in "the sick role".

Regrettably people stay in the sick role long after they should be well again.

We should always remember "the more things change the more things stay the same".

Some people collect straw hats in winter and profit in summer - most people buy hats in summer when the supply is scarce. Some patients work on their health care when they are well and rely on that knowledge and wisdom when they fall ill.

I have spent the past twelve months advising a CEO of major health care institution in my country. They paid me a lot of money for some very simple advice. Simply put my advice did not change - go talk to "healthy people" and be on about "wellness". Independent of what I had to say he had trials going that moved the most needy people from their worst "sick role" state to a far better state for them and the health care budget in this country.

What did they do that was so radical yet effective? They changed the lives of these extremely needy and very sick people by giving them "wellness" advocates. They did it with 40 people - spending lavishly on them to improve their "wellness" and even with this huge spend they saved the "taxpayers" money - go figure.

The sick role is itself a cancer - that is the message I get from that experiment. Next they are going to spend even more time and money on 2,000 people. Next it will 20,000 people.

Simplicity in the field of health care delivery starts and ends with "wellness".

Stay well and have fun....

Trevor Gay said...

Hi Richard - CEO’s that I know don’t hear directly from the mouths of patients their own stories. Sure the CEO’s will hear comments/complaints second hand through their underlings or by reading letters of complaints; but I am talking about sitting down and actively listening to individual patients stories as part of their job at least three times per week. I worked with probably around 20 different CEO’s in my NHS career and none of them did that.

I am sure most CEO’s do care and want to improve things. I just think their job would be enriched if they spent time listening to patients.

I am with you 100% about changing the emphasis to wellness rather than focusing so much on sickness. The NHS here in the UK is focusing more on wellness nowadays. I have always said that mot people most of the time are well. We need to focus much more money resources and energy on promoting wellness because that is where the added value really is.