Patient Education and Counseling 54 (2004) 159–161

Copying referral letters to patients: prepare for changePhilip White∗

Department of General Practice and Primary Care, Guy’s, King’s and St. Thomas’ School of Medicine,5 Lambeth walk, London SE11 5SP, UK

Received 18 December 2002; received in revised form 3 April 2003; accepted 9 June 2003

Abstract

The National Health Service (NHS) Plan for England has directed that from April 2004 clinicians will offer patients the opportunity toreceive copies of letters that are written about them. Patients like to have more information and patients who have received copies of lettershave found them useful. It is hoped that copying letters will improve relationships between doctors and patients, encourage patients to bebetter informed, and improve the quality of information provided to patients. Relatively little empirical research has been performed in thisarea but what exists is generally supportive. Attention will need to be paid to issues of confidentiality, the language and content of letters,and individuals who may have difficulty obtaining information from letters. This initiative is one of many that the NHS has introduced toenhance openness, honesty and the quality of information provided to patients.© 2003 Elsevier Ireland Ltd. All rights reserved.

Keywords: Education; Information; Knowledge; Patient letters

1. Introduction

The National Health Service (NHS) Plan for England hasdirected that from April 2004 clinicians will offer patientsthe opportunity to receive copies of letters that are writtenabout them[1].

Patient leaflets[2–4], tape recordings of consultations[5–7], access to patient records[8–10], and interactive de-cision aid computer programs[11,12] have all been founduseful by patients in enhancing communication. However,the copying referral letters to patients initiative is the firsttime in England the Department of Health has directed thatsuch a communication aid will be obligatory.

Having access to copies of referral letters is a right thatpatients already have but few are aware of it. Presumablyprimary healthcare trusts will be advertising this ‘new’ ser-vice in the months leading up to April 2004. This govern-ment initiative has been supported by the recommendationsmade in the Kennedy report[13] and those highlighted bythe Alder Hey enquiry[14]. It aims to enhance communi-cation, openness and trust between patient and doctor. It isa step along the way to the electronic patient health record,where patients will be able to access all medical informa-tion held about them. The electronic patient health record

∗ Corresponding address: 70 Beauval Road, East Dulwich, London SE228UQ, UK Tel.: +44-771-283-7033.E-mail address: mail@philipwhite.co.uk (P. White).

may not be available for a few years yet, but for now thecopying letters initiative shows that the government is seri-ous about encouraging patients to have access to, and lookat their medical records.

2. The evidence

Patients like to have more information about their ill-nesses[15], and it has been shown that those patients who re-ceived copies of their letters have found them useful[16–20].Most doctors supported copying letters to patients, how-ever, doctors’ enthusiasm for the initiative was not universal[17,18,21–23]. Most of the research into copying letters topatients has looked at copying hospital outpatient letters topatients; only two studies have specifically investigated theeffects of copying referral letters from general practitioners(GPs) to patients. Hamilton et al. performed a blinded ran-domised controlled trial to investigate the effects of copy-ing GP referral letters to patients on non-attendance rates atoutpatient departments[20]. In their study of over 2000 pa-tients, they found that copying referral letters to patients didnot reduce non-attendance at hospital outpatients, but pa-tients did find the letters helpful. In a small qualitative studyJelley and Van Zwanenberg copied GP referral letters to 20patients and found that patients valued receiving a copy oftheir letter and appreciated a greater understanding of an in-volvement in the referral process[19].

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160 P. White / Patient Education and Counseling 54 (2004) 159–161

A working group appointed by the Department of Health[24] to consider this initiative in its report suggested thatcopying letters could improve the quality of healthcare by:

• fostering partnership between patients and health profes-sionals;

• encouraging patients to be informed and responsible usersof health services;

• increasing the opportunities health care providers have togive information to patients;

• increasing the chances of inaccurate information beingcorrected.

At first glance the implementation of this policy seemsbeneficial and straightforward. Whoever produces the lettersimply prints a copy for the patient. However, a more carefulinspection reveals there are a number of important issues tobe considered.

3. The issues

Patient confidentiality must remain paramount and theremay be increased risks to confidentiality as correspondenceto patients can get lost in paper or electronic mail delivery.Tighter identification checks may be needed if patients areto personally collect letters and patients must be made awareof the consequences of unintended third parties seeing theirhealth records when not securely kept. The Data ProtectionAct requires no amendment to implement this policy butorganisations must ensure that reliable procedures are inplace to see that it is adhered to.

Not all patients are going to be able to get informationfrom letters. Those who do not have a level of English usesufficient to understand a letter may need help, and it needsto be made clear how and by whom this assistance will beprovided. Careful consideration will also need to be given tochildren and their carers, patients who are hearing or visuallyimpaired, and those who do not have the capacity to makedecisions for themselves.

It is likely that the language used in letters is going tohave to change. Difficulties in understanding medical termi-nology in letters could be overcome by providing a separateexplanatory letter using lay terms in addition to the usualletter. Another possibility is a letter containing two sections,one for clinician and one for patient. A third possibility isto write a ‘patient friendly’ letter. The working group oncopying letters to patients has suggested that this could beachieved by using words such as ‘kidney’ instead of ‘renal’and ‘heart attack’, instead of ‘myocardial infarction,’ andby using Read Codes to ensure consistency. Unfortunatelyusing Read Codes in some circumstances can introduce in-accuracies when the most appropriate clinical term does nothave a matching Read Code. Also a ‘heart attack’ to one per-son could mean ‘heart failure’ or ‘cardiac arrest’ to another.

Perhaps more contentious is the possibility of dissatis-faction over the factual content that letters contain. This is

particularly pertinent where GPs arrange appointments forpatients at hospital outpatient departments as GPs may haveinformation in patients’ records of which patients are notaware. The inclusion in letters of potentially sensitive infor-mation and its relevance to the referral may need to be nego-tiated between patient and doctor. If patients are encouragedto see their referral letters occasionally GP and patient willdisagree on what its content should be. This may not onlybe because of the inclusion of personal facts that the patientfinds distressing, but also because of information that mayprioritise the referral and determine the time the patient hasto wait for the appointment. Certainly information and opin-ions that have not been discussed between GP and patientshould not appear in referral letters, but a situation couldarise where patient and doctor have difficulty agreeing onappropriate referral letter content.

Some doctors have expressed reservations over copyingletters to patients[17,18,21–23]. It is probable that doctorswill not welcome the additional work that copying letterswill create. Most clinicians will surely appreciate the oppor-tunity for patients to correct inaccurate basic patient details,but whether they will appreciate patient scrutiny of theirclinical management is less certain. Evidence based guide-lines and National Service Frameworks are now availableto patients and some doctors may have difficulty explain-ing why they are not strictly adhering to them. This delicatematter could be the most threatening issue as far as GPs areconcerned.

The working group on copying letters to patients has rec-ommended that additional resources will be needed to im-plement this policy. It identified the possible need for longerconsultations, more administration and stationary, arrange-ments to ensure equal opportunities and time to correct inac-curacies and answer queries. For some training, supervisionand support will also be required.

4. Conclusion

It seems that copying referral letters to patients is a wor-thy development in promoting trust and honesty in the NHS.Although the evidence base to support this initiative is rela-tively small, patients appear to welcome the opportunity ofhaving copies of their letters. From what has been consid-ered so far the benefits may outweigh the challenges, butwhether this initiative is widely taken up by patients remainsto be seen.

Before starting to copy referral letters to patients the fol-lowing points should be considered:

• Provide the opportunity for patients to make correctionsto referral letters where needed.

• Minimise the use of medical terminology in letters.• Use factual descriptions about patients that are strictly

relevant to their referral.• Provide follow-up support for patients and carers to ex-

plain the content of letters if needed.

P. White / Patient Education and Counseling 54 (2004) 159–161 161

• Agree the content of the referral letter with the patient dur-ing the consultation, especially when ‘sensitive’ patientinformation is included.

The NHS culture change to openness and patient–doctorpartnership is underway and the copying letters initiative isjust one of many current NHS initiatives aimed to make pro-viding high quality information to patients more efficient. Itappears that providing copies of letters to patients is going tobe specifically linked to the income of health care providersand already it is included in the National Service Frame-works for diabetes and coronary heart disease. We must hopethat the implementation of the copying letters initiative canbe achieved without sacrificing other important services.

References

[1] Department of Health. The NHS plan. London: Stationary Office;2000.

[2] Morris LA, Halperin JA. Effects of written drug informationon patient knowledge and compliance: a literature review. AJPH1979;69:47–52.

[3] Gauld VA. Written advice: compliance and recall. J R Coll GenPract 1981;31:553–6.

[4] Little P, Somerville J, Williamson I, Warner G, Moore M, Wiles R, etal. Randomised controlled trial of self management leaflets and book-lets for minor illness provided by post. Br Med J 2001;322:1214–7.

[5] Tattersall MH. Consultation audio-tapes: an information aid, and aquality assurance and research tool. Suppl Care Cancer 2002;10:217–21.

[6] Knox R, Butow PN, Devine R, Tattersall MH. Audiotapes of on-cology consultations: only for the first consultation? Ann Oncol2002;13:622–7.

[7] Reynolds PM, Sanson-Fisher RW, Poole AD, Harker J, Byrne MJ.Cancer and communication: information-giving in an oncology clinic.Br Med J 1981;282:1449–51.

[8] Bird AP, Walji MTI. Our patients have access to their medicalrecords. Br Med J 1986;292:595–8.

[9] Drury M, Yudkin P, Harcourt J, Fitzpatrick R, Jones L, Alcock C,et al. Patients with cancer holding their own records: a randomisedcontrolled trial. Br J Gen Pract 2000;50:105–10.

[10] Jones RB, McGhee SM, McGhee D. Patient on-line access to medicalrecords in general practice. Health Bull 1992;50:143–50.

[11] Murray E, Davis H, Tai SS, Coulter A, Gray A, Haines A.Randomised controlled trial of an interactive multimedia decisionaid on benign prostatic hypertrophy in primary care. Br Med J2001;323:493–6.

[12] Murray E, Davis H, Tai SS, Coulter A, Gray A, Haines A.Randomised controlled trial of an interactive multimedia decisionaid on hormone replacement therapy in primary care. Br Med J2001;323:490–3.

[13] Kennedy I. Learning from Bristol: the report of the public in-quiry into children’s heart surgery at the Bristol Royal Infirmary1984–1995.http://www.bristol-inquiry.org.uk/; 2001 (accessed 18November 2002).

[14] Department of Health. Families and postmortems: a code of prac-tice. http://www.doh.gov.uk/tissue/familiescode.htm; 2002 (accessed18 November 2002).

[15] Coulter A, Entwistle V, Gilbert D. Sharing decisions with patients:is the information good enough? Br Med J 1999;318:318–22.

[16] Bailey G, Hyde L, Morton R. Sending a copy of the letter to thegeneral practitioner also to the parents in a child development centre:does it work? Child Care Health Dev 1996;22:411–9.

[17] Cowper DM, Lenton SW. Letter writing to parents following paedi-atric outpatient consultation: a survey of parent and GP views. ChildCare Health Dev 1996;22:303–10.

[18] Waterston T, San Lazaro C. Sending parents outpatient letters abouttheir children: parents’ and general practitioners’ views. Qual HealthCare 1994;3:142–6.

[19] Jelley D, Van Zwanenberg T. Copying general practitioner refer-ral letters to patients: a study of patients’ views. Br J Gen Pract2000;50:657–8.

[20] Hamilton W, Round A, Sharp D. Effect on hospital attendance ratesof giving patients a copy of their referral letter: randomised controlledtrial. Br Med J 1999;318:1392–5.

[21] McConnell D, Butow PN, Tattersall MH. Audiotapes and letters topatients: the practice and views of oncologists, surgeons and generalpractitioners. Br J Cancer 1999;79:1782–8.

[22] Jelley D, Van Zwanenberg T, Walker CL. Letter. Concerns ofclinicians and patients need to be addressed first. Br Med J2002;325:1359.

[23] Towler HMA. Letter. No one really cares. Br Med J 2002;325:1360.

[24] Working group on copying letters to patients. Copying letters topatients. www.doh.gov.uk/patientletters/mar02report.pdf; 2002 (ac-cessed 18 November 2002).