Doctors are from Mars: Patients from Betelgeuse

“Mrs Smith, your child has accompanying gliosis in the posterior right temporal
lobe.”

Involving patients in decisions about their health care is central to the NHS plan as is
clear communication. Engaging and informing patients results in greater patient
understanding and involvement in shared decision making, better compliance with
treatment and improved outcomes, especially for patients with chronic conditions.
One of the pillars of the NHS Plan was sending patients a copy of all the letters
doctors wrote about them to other doctors or allied professionals.

The main concern of NHS managers and clinicians when the initiative was first
mooted was the cost of the exercise. With millions of patient referral or discharge
letters sent between consultants and GPs each year, who was going to pay for
someone to photocopy the extra letters, put them in an envelope and stamp it?

What most concerned patient representatives was not the cost of the exercise, but the
ability of the patient to be able to comprehend what was being written about them.

Doctors were encouraged to write letters in simple language so everyone could

understand what was being said. They were offered training courses in
communication. But how would they be able to talk to their patients, examine them,
make a diagnosis, decide on treatment and then explain their proposed action plan,
when they were being penalised for going over the Government deadline of not
keeping any patient waiting more than thirty minutes after the time of their
appointment?

“Copying letters to patients” was supposed to be rolled out by every NHS Trust by
April 2004, but many Trusts are still not complying with Government guidance.
Those who are diligently copying the patient in on every major letter written about
them have forgotten to include one very important item – the medical dictionary.

When doctors write to doctors, either in letters or in reports, they may think they are
writing in English. In fact they are communicating in a language it took them seven
years to learn. Patients, unless they have access to interpreters and outside information
sources, have not had the opportunity to spend time becoming proficient in the same
language. This means when the letter arrives on their doorstep, they believe they
should understand what is written, but often are left feeling totally bemused about
what has been said. The doctor may have explained what s/he is going to write during
the previous consultation, but although the patient and their family member or carer
who accompanied them may well have nodded and smiled at the time and even
agreed, the chances are their recall of the conversation will be limited.

Here are two examples I have recently come across.

Case One
A nine year old girl was being treated by her local hospital for severe asthma. The
mother had a good relationship with the consultant, but wondered why she had not
been given an appointment to see him for the past twelve months. After her last out-
patient appointment, the consultant sent her a copy of the letter he sent to the GP. In
the letter, the consultant wrote “The real time effects of the asthma attacks need to be
studied. The blood gas concentrations must be analyzed in the nearest Accident and
Emergency Department during the next attack so the results can be ascertained and
further treatment decided.”

The mother was asked if she had taken her daughter to the nearest hospital for a blood
test when she had an asthma attack. She looked blank and said no, no-one had told her
to do so. She had no idea such an instruction was included in the letter she was given.
She presumed the letter was between her consultant and her GP and had not liked to
ask for an explanation of the terms she did not understand.

Case two
A twelve year old boy with acquired brain injury from a road traffic accident was sent
for an MRI scan. The mother was given a copy of the radiographer’s report. This is an
extract from the report. “There is volume loss and accompanying gliosis in the
posterior right temporal lobe, which is predominantly cortically based. This is the
sequelae of contusion, as seen on the previous CT scan post head injury.” The mother
said “I can’t even pronounce the words, let alone understand what they mean! I know
I should be able to read the report, but it doesn’t make any sense at all.”

Despite the severity of the son’s trauma, no-one at the hospital where he was treated
had thought to give the family easily understandable written information they could
take away and digest about how the brain works, what terms were used to describe the
functions of the various parts and the damage that had been caused and the
implications for her son’s future development. She was the full time carer, trying to
understand why her son was acting in the way he did, but the professionals, although
doing their best to be helpful and comply with Government demands, had not thought
through the implications and responsibilities of passing on information in a form
which could be both easily understood and retained.

Doctors must be accurate when sending information to their colleagues. They use
words they have been trained to use to describe medical conditions and their
consequences. This means they produce an accurate medical picture of events and
future treatment. They do not have time to explain what they mean in simple terms in
a written form. They may well do this and draw pictures during face to face
consultations, but they don’t have the opportunity to carry this through in the letter to
another professional.

What can be done?

Many people need a translation of what has been written, so they can understand what
is being said about them or their loved ones. Only then can they begin to contribute to
the debate about their care and act upon the information received in the most helpful
way. If letters are to continue to be copied to patients, they must highlight any
important action points and be accompanied by a glossary of words used and simple
diagrams of body parts which explain terms and functions. This way, not only will the
letters keep patients informed, but will also provide an easy reference for them to
access.

References

DOH NHS Plan July 2000 HMSO

DOH “Copying Letters to Patients : Background, Issues and Progress”
http://www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/PatientAndPublicInvol
vement/CopyingLettersToPatients/CopyingLettersToPatientsArticle/fs/en?
CONTENT_ID=4000431&chk=Tia2zO 9 November 2005