How can patients make doctors listen to them?

Conversation between doctor and patient/consumer.

Good Communication

Getting rid of ‘Dr. 30 Second’

Moaning to my lovely GP about one doctor known to nurses as Dr. 30 second, he said, “you can ask for another one”.  So I did.

So if your doctor won’t communicate properly with you, ask to be changed.

When enough patients have done this, hospitals might do something about teaching all doctors to COMMUNICATE.

The louder we shout, the quicker this will happen!

Royal Marsden staff can be bad at communicating

The late Chaplain at the Royal Marsden used to say doctors were constantly saying to him that they didn’t know how to talk to patients.

Now there is confirmation that this problem is officially recognised:  these views had been expressed in a survey conducted on behalf of the Department of Health‘s cancer czar Professor Sir Mike Richards.

London’s Evening Standard (16th February) had Kiran Randhawa reporting on this, saying the hospital had been “rated as one of the worst at communicating with patients about their condition“.

The story said medics at the Royal Marsden Hospital in Chelsea have come under fire for confusing cancer victims and giving them conflicting information about the disease.  Patients also say they did not think doctors seeing them knew how to treat their cancer. Hospital bosses have now ordered consultants to improve standards in a memo, leaked to the Standard”.

The Standard went on to say the hospital’s medical director “sent out an email to staff saying the hospital trust was in “the bottom 20 per cent of trusts in the country”.  And very worryingly, talking about patients,  “almost one quarter were given confusing information about their condition”.

Talking to someone working for Imperial college trust, she told me the Marsden had approached her trust to ask them to talk about what they can do to improve communications.  I can tell them the first candidate for any training should be the Marsden nurse who told me, “you are ONLY a patient”.

Patient Experience

As a patient  at the Marsden, I had been terrified when Tamoxifen (one of the drugs I was prescribed) made me blind in one eye.  But instead of talking me through this side effect, all my doctor could offer me was “do you want to come off the drug?”

This seemed unhelpful – and I quoted this one sentence on my website.  Next thing I was ‘ambushed’ by a patient committee and told I was being ‘disloyal’ to the Marsden (no mention of disloyalty to me!).

Eventually I consulted a French specialist.  He did tests; said this was a common side effect of Tamoxifen;  I didn’t have any permanent scarring, and my sight would return in 2 – 3 months.  This Communication was all it took to reassure me, so I kept on with Tamoxifen.

Same story when I came out in skin lesions overnight all over my body.  This time I was told  “it’s your age” after a two minute consultation: given to me whilst I was stark naked, in front of students – who, when I summoned up courage to ask questions, whispered “she’s right”.  The Consultant didn’t like this, and swept out of room.

Again the French came to my rescue, saying that it was ‘classique’ Tamoxifen side effect.   And produced all the lovely products I mention elsewhere which cleared up the problem.

But final word rests with Geoff Martin, chairman of NHS campaign group Health Emergency.  The Standard quotes him:  “It’s of huge concern to Londoners and to those across the country that an internationally renowned specialist cancer hospital has fallen so low in terms of patient satisfaction. The hospital needs to give us an explanation for this.”

Ignoring hormonal drug side effects  is no way to help patients survive longer

A study by Kaiser Permanente in the USA confirms the worrying trend in Britain;  if doctors don’t communicate, researchers have found more than half of Breast Cancer patients don’t take their drugs, or come off them – often long before the end of their course.

This research confirms this is a serious problem on both sides of the Atlantic, and in Britain’s case might point to why UK patients don’t live as long post cancer as do Europeans.  Worryingly, British levels of non-compliance are probably up to 15% higher (approx 50% v. 65%) than those in US.

Dr. Dawn Hershman published research in  Journal of Clinical Oncology. It said only half the women with early-stage breast cancer who were prescribed tamoxifen and/or aromatase inhibitors, completed the full course of treatment, putting themselves at increased risk for breast cancer recurrence.

So what needs to be done before it occurs to Oncologists that it might be an idea to LISTEN to patients, and help them cope with side effects, so we stay on drugs and reap the benefits?

What can patients do?

If doctors are reluctant to listen, it can help to call one of the cancer charity helplines:

Breakthrough Breast Cancer  08080 100 200

Breast Cancer Care  0808 800 6000

Cancer Research UK 0808 800 4040

Macmillan 0808 808 0000

Then, exercise your right to a second opinion, and change your doctor to one who will COMMUNICATE.

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