Copying letters to patients
BMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7386.449 (Published 22 February 2003) Cite this as: BMJ 2003;326:449All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles or when it is brought to our attention that a response spreads misinformation.
From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit.
The word limit for letters selected from posted responses remains 300 words.
The experience of this carer of a young man with long term ME/CFS
being denied access to medical information is disturbing [1].
It might be timely to draw readers' attention to the following:
The recently set up 'Connexions Service' (a 'One Stop Shop' for
school children and young people delivering advice on careers, education,
training, behavioural and social problems, drugs and sexual health) has
taken over from the old 'Careers Service'.
Personal Advisors in the Connexions Service have been given the power
to obtain consent from young people for 'information sharing' between the
various agencies that may be involved with a young person's education,
health and social welfare.
The Personal Advisor can decide whether a young person is
'sufficiently mature' to make the decision to give consent for
'information sharing' between agencies and for a Personal Advisor's
'assessment profile' of the young person to be carried out. If the
Personal Advisor thinks it appropriate, the parents or carers do not have
to be informed that consent has been obtained from their child for this.
Young people must be given access to information held on file, but
parents can have access only if the young person agrees to this. How can a
parent question the validity of a PA's assessment or opinion when they may
not be aware of what has been written by the PA, obtained from another
agency or judge whether this should be passed on to other agencies
involved in their young person's education or welfare?
Personal Advisors are also given guidelines for carrying out
'assessment profiles' in which extremely intrusive 'issues' relating to
the young person and the family can be 'explored' – not just in the areas
of 'Key and Social Skills' but identifying evidence of possible mental
health problems in the young person
and the assessment of 'parenting skills' and 'family dynamics'.
The potential for ill-judged assessments and the possibility of
inaccurate or inappropriate information being passed from agency to agency
by newly trained, but as yet, inexperienced Connexions staff coupled with
the potential for these assessments leading to recommendations for
referrals to yet further agencies, needs urgent addressing, not to mention
concerns over data protection issues and the long-term storage of these
records.
The culture that still persists in some spheres, within the UK, over
who 'owns' personal information is of grave concern to many parents not
just those with
young people unable to access mainstream education because of long-term
sickness.
Parents should be provided with copies of correspondence between all
agencies involved in their child or young person's welfare not just
medical letters between hospitals and GPs.
1 Re: Copying letters to patients: Name and address supplied(eBMJ 24
February 2003)
Competing interests:
None declared
Competing interests: No competing interests
Dear Sir,
There are many advantages to providing patients with written records
of a consultation, including those outlined by Suzy Chapman (1) - for
information, to allow errors to be corrected, improved communication and
to aid recall of complicated and/or distressing information.
It is also necessary to reply to the referring doctor with
appropriate information, diagnoses, management strategies and prognosis.
It is likely that most of this will have been discussed with the patient
but some may have been kept back for reasons elicited by Graham Murray et
al. (2) such as patient distress and confidentiality to third parties.
It does not seem clear, however, that these two letters with
different purposes and different receivers should necessarily be copies of
each other. This seems particularly the case as doctors communicating
with each other (like all professionals) use specific terminology to
convey precise information that may be either unintelligible or
misinterpreted by a lay person. In psychiatry the words "psychosis" and
"schizophrenia" both have very different interpretations in the non-
medical world even if the letter simply excludes these symptoms/diagnosis.
There is a possibility that copies of the same letter to all parties
may hinder communication rather than aid it.
Yours sincerely,
Dr. C. O'Loughlin MRCP MRCPsych
SpR, Cambridge
(1) Suzy Chapman, Copying letters can help avoid communications
nightmare, BMJ 2003;326:449 (22 February)
(2) Graham K Murray, Harpal Nandhra, Nigel Hymas, Neil Hunt,
Psychiatrists omit information from letters when they know patients will
be sent copies, BMJ 2003;326:449 (22 February)
Competing interests:
None declared
Competing interests: No competing interests
Dr. Murray and his colleagues(1), recent letter outline the readiness
of psychiatrists to disclose complete written information to patients.
Inability to recall physicians encounter may lead to patient
dissatisfaction. In patients with a serious medical disorder, such as
malignancy, several sources of poor communication has been identified
including poor communication skills, lack of time, patient's anxiety and
shock, and patient denial (2). Doctor-patients communication have often
been identified to vary in quality and quantity(3).
It is customarily to summarize the exit interview of patients and
send a letter to the patient and referring physician. These letters have
to be written, keeping the fact that the patients should be able to
interpret the recommendation and identify the information included as
accurate. Physicians often include medical terminology which may not be
clear to the patients and these generate additional phone call from
patients. Also, physicians should be ready to correct an incorrect
information or omit information which the patients might later point out.
In the quest to provide the patient and their referring physicians
with complete information very often letters are helpful. Letters also
reinforce recommendation made by physicians which the patient might have
forgotten during their visit. It has been postulated that letters may
invoke anxiety in patients however the evidence is often lacking in this
case. Additional study is indicated in the direction of interpretability
of physicians letters by patients . Letters remain an important modality
of communication with our patients and also remind us, the patients and
other providers regarding our mutual medical decision making process. Very
often when decisions are taken contrary to current medical evidence based
on patients preference, a good letter maybe our only reference.
References:
1) Murray G, Nandhra H, Hymas N, Hunt N. Psychiatrists omit
information from letters when they know patients will be sent copies. BMJ
2003;326:449.
2) Dunn S M, Butow PN, Tattersall MHN, Jones QJ et al. General
information tapes inhibit recall of the cancer consultation. J Clin Oncol.
1993;11:2279-2285
3) Mackillop WJ, Stewart WE, Ginsberg AD et. al. Cancer patients
perception of their disease and its treatment. Brit J Cancer 1988;58:355-8
Competing interests:
None declared
Competing interests: No competing interests
Editor-
Murray, Nandhra, Hymas and Hunt highlight some pertinent issues regarding the NHS plan for patients to receive copies of their medical correspondence as of right.1 2 Indeed, this has wide-ranging implications for our current practice and raises serious concerns about confidentiality, resources and medico-legal issues. Furthermore, as April 2004 fast approaches we feel it is still unclear whether this introduction reflects the true desires of patients and their carers.
In an attempt to elucidate this point we performed a questionnaire survey in a psychiatric hospital outpatient department over a 10-week period, between September and November 2002. All older adult patients and their carers attending the clinic were approached to take part. Our research tool comprised separate questionnaires for patients and carers using a multiple-choice format. We asked subjects how they would like to receive information about their treatment and care and also if they felt it was appropriate for carers to have copies of a patient’s medical correspondence. Descriptive data were produced and the Chi-square statistical test was used to further analyse data.
A total of 50 subjects were recruited in the patient group. It was found that by far the majority of patients wanted a letter of some sort about their treatment and care but that most would rather this was in the form of a separate, simple letter (see Table 1). Most patients said they had somebody who helped them with their problems (n=43). When asked if they would like their helper to have a copy of their letter, 27 said yes and only 9 said no. 14 patients gave no response.
A total of 38 subjects were recruited to the carer group. The majority of carers also wanted a letter about patients’ treatment (see Table 1). For letter preference the results of the carer group closely resembled those of the patient group, most subjects preferring a simple letter separate to the one sent to the GP. There was no significant difference between the patient and carer groups for letter preference (chi2 =2.562, p=0.464). When asked if they thought they should receive letters about a patient’s care and treatment if the patient was unable to give their permission, 34 carers said yes and only three said no. Nine subjects gave no response.
It is clear that patients want written information about their care and our small survey reflects this current understanding.3 However, our results indicate that the majority of patients and their carers would like a separate, simple letter rather than a copy of the correspondence sent to the GP. In addition, we have highlighted the fact that we must consider the needs and wants of carers when we decide how best to relate medical information. More specifically, we would argue that extra caution should be taken when looking at the older adult population and psychiatric patients where issues of mental capacity and risk are precedent. Further thought and research is needed to find a way to satisfy patients, carers and their doctors.
It appears that we are faced with the task of implementing policies with little, or no, evidence base, which have no regard for potentially undesirable, even harmful, implications.
1. Murray G, Nandhra H, Hymas N, Hunt N. Psychiatrists omit information from letters when they know patients will be sent copies. BMJ 2003;326:449.
2. Department of Health. The NHS Plan. London: Stationery Office, 2000.
3. Jelley D, van Zwanenberg T, Walker C. Copying letters to patients: Concerns of clinicians and patients need to be addressed first. BMJ 2002;325:1359.
Table 1. Letter Preference of Patients and Carers Letter preference Patients n=50 (%) Carers n=38 (%) Copy of GP letter 10 (20) 9 (24) Medical letter with a copy to the GP 14 (28) 11 (29) Separate/simple letter 18 (36) 16 (42) No letter 3 (6) 0 (0) No response 5 (10) 2(5)
Jenny Dale
senior house officer, psychiatry
Queen Elizabeth Psychiatric Hospital, Mindelsohn Way, Edgbaston, Birmingham, B15 2QZ
George Tadros
consultant psychiatrist
Queen Elizabeth Psychiatric Hospital, Mindelsohn Way, Edgbaston, Birmingham, B15 2QZ
Susan Adams
clinical psychologist
Queen Elizabeth Psychiatric Hospital, Mindelsohn Way, Edgbaston, Birmingham, B15 2QZ
Nikhila Deshpande
SpR in psychiatry
Birmingham
Competing interests:
None declared
Competing interests: Table 1. Letter Preference of Patients and CarersLetter preference Patients n=50 (%) Carers n=38 (%)Copy of GP letter 10 (20) 9 (24)Medical letter with a copy to the GP 14 (28) 11 (29)Separate/simple letter 18 (36) 16 (42)No letter 3 (6) 0 (0)No response 5 (10) 2(5)
I was interested to note that the
Psychiatrists involved in the research expressed similar concerns to other
health professionals. Where concern centres on the possibility of the
information causing harm (to the patient) then exclusions contained in the
Data Protection Act - and formerly in the Access to Medical Records Act-
apply in that the health professional can choose not to copy the patient
into the correspondence.
A study carried out at the George Eliot Hospital has demonstrated
that health professionals have similar concerns to those expressed by the
Pyschiatrists around possible distress to patients when providing
information. However our study showed that patients would prefer to have
the full facts irrespective of what they may be.
Competing interests:
None declared
Competing interests: No competing interests
As a carer for my son who has had ME/CFS for some 6
years and who is now 18, I read Suzy Chapman's views with
interest.I could particularly relate to her statement;
"For parents of young people who are unable to access
mainstream education because of long term illnesses such
as myalgic encephalomyelitis/chronic fatigue syndrome the
difficulties in maintaining effective liaison between
school, special educational needs coordinator, educational
welfare officer, home tuition coordinator, general
practitioner, hospital consultant, community
paediatrician, and local education authority can be
serious."
We have been denied access to some of the
information in medical records and blocked from any active
discussion about them. In addition, a private ME
Consultant was also discouraged and obstructed from
receiving the information.
As a professional with considerable experience of
child protection issues, I can only summise that we might
have been considered Munchhausen by Proxy or that our son
might have been considered to be at risk from Fabricated
or Induced Illness by Carers.
We are not the only local family to feel
intimidated and threaten when we have taken an active
interest in our son's health.
Whilst understanding and recognising that caution
has to be exercised in some cases, we wonder if our
experience is the norm rather than the exception.
We welcome the guidelines to be introduced in
April 2004.
We would ask you to consider withholding our
personal details due to the sensitivity of the
information, but understand if this is not possible.
Competing interests:
None declared
Competing interests: No competing interests
The authors have treated the issue of copying letters with real
sensitivity but have highlighted a significant ethical problem. Those
practitioners who are uninfomed of research, think they know best anyway,
are less experienced or convinced, will find loopholes with which to by
pass the new regulations. Already some phone each other so that parts of
discussions are off the record. Anybody would feel uneasy if they sense
something covert has been carried out but this is it very difficult to
challenge and practitioners are highly unlikely likely to admit it. If new
regulations are being breached by some and not others this will soon get
around the user movement.
Whose health is it? Why should some
doctors feel so possessive about others' information? The misuse of power
cannot be any part of a healing relationship. At the least practitioners
should honestly state their views to those who consult them so that the
minority (according to this study) who have no objection to denial of
parts of their information may continue to consult them and those with
the majority view, seek help elsewhere.
Obviously I realise this is a little pie in the sky as there is no real
choice in reality but this would be a right not a favour.
Competing interests:
None declared
Competing interests: No competing interests
re: Copying letters to patients
I share Suzy Chapman's concerns relating to the
Connexions service remit and framework.
As a specialist teacher working with emotinal and
behaviourally disturbed young people, I am aware of
difficulties experienced relating to confidential and
sensitive information being misused.I agree with her
analysis,
"The potential for ill-judged assessments and the
possibility of inaccurate or inappropriate information
being passed from agency to agency by newly trained, but
as yet, inexperienced Connexions staff coupled with the
potential for these assessments leading to recommendations
for referrals to yet further agencies, needs urgent
addressing, not to mention concerns over data protection
issues and the long-term storage of these records."
Parents need to be aware that they have legal entitlement
to access their children's educational files up to the age
of 16 and with the young person's consent, up to the age
of 17.These files should contain all relevant information
held on the child, including correspondance from medical
and other practioners
I believe Connexions may not readily always have access to
these files, certainly the schools and LEA have to retain
the information for about 5 years after the end of
"compulsory schooling".
Connexions staff tried very hard to help our son, however
they encountered the same barriers and difficuties as we,
the parents did inmoving thingd forward.
When I accessed my son's file, I found letters containing
inaccurate information about my son's attendance at school
from a paediatricain which resulted in him being refused
appropriate educational support.
In addition, a report in the file from another health
professional expressed a view about my son's difficulties
with which I disagreed.
This view resulted in the school regarding my son as
phobic,not sick.
They subsequently "excluded" him at the first opportunity
post 16.
This had a profound and detrimental effect on him
emotionally, socially and educationally.It also put an
enormous strain on family relationships.
We have had a 3 year fight to gain recognition of his
entitlement.
It is hard enough coping with a severely ill young person
let alone having to fight the system too.
If we had been aware of these difficulties and
inaccuracies sooner, we could have pre-empted many of the
difficulties and could have better aided some recovery.
The Department of Education and Skills, Connexions and the
learning and Skills Council have yet to publicly agree on
how to support "Additional Needs Learners".
Meanwhile "disadvantaged" chronically sick young young
people are being marginalised by some education and
training providers. This does little to help the managment
of the transition to adult life,to aid independence or to
assist professions enlisted to help young people.
Proper sharing of appropriate information is therefore
essential.
Competing interests:
None declared
Competing interests: No competing interests