Copying clinic letters to patients

J. Nixon and P. Courtney

Nottingham City Hospital, Hucknall Road, Nottingham NG5 1PB

Correspondence to: J. Nixon. E-mail: jnixon1{at}ncht.trent.nhs.uk

Sir, The initiative to copy letters to patients is part of the government's policy to increase patient involvement in their care and treatment. It was referred to in both the NHS Plan [1] and the Kennedy Report, and the subsequent Department of Health guidelines recommend that, from April 2004, patients should be offered a copy of letters written by one health-care professional to another about them. The purpose of copying letters is to empower patients by enabling them to be aware of what is written about them. The right to receive a copy of a letter should be seen as good clinical care. The full report of the working party on copying letters to patients is available in the Department of Health's website at www.doh.gov.uk/patientletters/issues.htm.

For the past 9 months, in our rheumatology department we have been routinely sending patients a copy of the letter that is sent to their GP. We undertook a survey of hospital staff and patient attitudes to copying letters. The aims were to assess how beneficial a process this is and if there are any adverse effects on patients.

Three separate questionnaires were anonymously filled in by (i) follow-up patients attending rheumatology out-patients who had received a copy of their GP letter, (ii) rheumatology health-care professionals involved in sending copy letters, i.e. consultants, nurse specialists and specialist registrars, and (iii) rheumatology secretaries.

In the patient survey, 180 questionnaires were handed out by the receptionists in the out-patient department over a 2-week period. One hundred and ten questionnaires were returned; 104 were analysed as six were unable to be used for reasons such as the patient not having received a copy letter or not fully completing the questionnaire.

The age range of the patients was from 26 to 86 yr (average 57 yr). Seventy-three per cent of the patients were female. The majority (44%) of the patients had rheumatoid arthritis. Table 1 shows some of the responses to the questionnaire. Ninety-five per cent of patients felt the letter was very/quite accurate; 95% felt it was very/quite easy to understand; 99% felt it was very/quite helpful and 99% felt it was not very or not at all upsetting to receive this letter.


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TABLE 1. Responses to the questionnaire

 
We asked if patients would like to continue to receive copies of the letter. Ninety-one per cent of patients said ‘yes’ and 9% said ‘don’t mind’.

The average length of time to receiving the clinic letter was 7 days (range 3–28 days). Thirty-five per cent of patients read the letter once; 36% said they read it twice and 9% read it three times. Some patients commented that they read it several times (11%) or keep it for future reference.

At the end of the questionnaire, we asked patients for their comments/suggestions. Forty-three out of 104 patients responded. Out of these, only three negative comments were written. One patient did not like his name and age in bold type. One patient would have liked the letter explained in more detail. One patient pointed out that medical phraseology was sometimes difficult to understand and that they kept a book at home to clarify things. The positive comments were numerous. They included: ‘I think it is an excellent idea, very informative and helpful.’

‘I think it's good they take the trouble to do this, it shows they are interested in you and it helps you to understand things better and promotes communication all round.’

‘Please continue to send letters. By the time I have got home, I have forgotten half of what was said in clinic.’

‘The letter is very reassuring—although my GP gets a copy, having my own copy reassures me that I am a person and not a disease.’

‘I find it useful to keep track of dates when medication is altered and injections I have had.’

To assess the opinion of health-care professionals on copying letters, questionnaires were filled in by six consultants, four specialist registrars and three nurse specialists. Ninety-two per cent felt this process was very/quite useful to patients. When asked how much they had had to change the style of their letter-writing, six out of 13 responded ‘to a small extent’ and five out of 13 responded ‘not much’. Only two out of 13 (15%) felt they had to change to a large extent.

When asked how often they left information out of a letter, all responded rarely or never. Nine out of 13 rarely or occasionally did not copy letters to patients and four out of 13 said they never did this.

Eleven out of 13 had had direct positive feedback from patients about receiving a copy letter. Only two out of 13 had had any negative feedback. These were from the relative of one patient with a psychiatric illness and from one patient who was very concerned about the previous letter and had a lot of questions when coming to clinic. There were other comments; for example, two patients rang to correct their medication and one patient rang to correct their alcohol intake history.

All health-care professionals surveyed felt we should continue with this practice.

The eight rheumatology secretaries based between Nottingham City Hospital and Queen's Medical Centre may be most affected by this practice in terms of increased workload.

Seven out of eight (87.5%) secretaries felt that this was very or quite beneficial to patients; only one out of eight felt it was not very beneficial. Seven out of eight (87.5%) felt that it had led to a small increase in workload. Seven out of eight said that they occasionally or rarely get contacted by patients about the contents of the letters. Five out of 8 (62.5%) felt we should continue this practice; two (25%) were neutral.

From this survey we found that copying letters to rheumatology patients was perceived as positive and popular with patients and staff. Rheumatology departments manage patients with long-term chronic disease, who are often on several medications and have multiple co-morbidities. Time in out-patients is limited and it is well known that patient recall of information given during a consultation is poor [2], so the copy letter is especially valuable.

It could be argued that there is an element of selection bias in that patients who are happy with the service may be more likely to fill in the questionnaire and be more positive. However, our results are reflected in other studies, including a dermatology study of 70 patients in which 98% of patients thought the letter was in keeping with their consultation, 98% understood all/most of the letter, and 100% found it useful or very useful [3].

The benefits of sending copy letters to rheumatology patients have been known for nearly 20 yr [4]. Several subsequent studies from oncology, paediatrics and primary care in the 1990s showed a generally positive response from patients [5, 6]. Despite the overwhelming evidence that patients want copy letters, the practice has been slow to take off. The Department of Health guidelines and changing attitudes among health-care professionals may make a difference. McConnell et al. investigated the opinions and practice of provision of audiotapes and letters by surgeons, oncologists and GPs [7]. They found that younger clinicians were more likely to make information from the consultation available to patients, which may reflect changes in emphasis in medical education.

There are some drawbacks to copying letters. There is an increased secretarial workload and administrative cost. Our survey suggests that secretaries are supportive of the process. A pilot study in 2002 in a Northeast GP surgery found that the cost of each letter was around £1, with a cost to the practice of £5000 per annum [8]. However, the study by Tomkins et al. in a dermatology department found the cost to be 25.3 pence per patient: 2 pence in paper and printing, 1 pence for the envelope, 19 pence in postage and 3.3 pence in secretarial time [3]. They felt the cost to be small in comparison with the benefits gained. If copying letters can improve compliance, hospital attendance and reduce the need for follow-up appointments, costs overall may be reduced, but this is yet to be proven.

One of the other issues is the communication of sensitive issues. Two specialties where this is most relevant are oncology and psychiatry. A Cochrane review found that between 83 and 96% of patients found recordings or summaries of their oncology consultations valuable [9]. Although patients with cancer found receiving the letter distressing to some extent, they still thought it was useful [6]. Nandhra et al. conducted a study on 76 psychiatry patients and found that 83% of the patients wished to continue to receive letters, and most found it helpful to receive letters despite 18% finding the letters distressing [10].

Our survey confirms that patients want to receive copy letters and find it very useful. The beneficial effects outweigh the drawbacks, which can easily be overcome. We suggest that the benefits of copying letters should be recognized and the process welcomed voluntarily rather than eventually responding to an imposed compulsory directive.

The authors have declared no conflicts of interest.

References

  1. Department of Health 2000. The NHS plan. Paragraph 10.3. London: Stationery Office. (www.doh.gov.uk/patientletters/)
  2. Ley P. Memory for medical information. Br J Soc Clin Pyschol 1979;18:245–55.
  3. Tomkins CS, Braid JJ, Williams HC. Do dermatology outpatients value a copy of the letter sent to their general practitioner? In what way and at what cost? Clin Exp Dermatol 200;29:86–6.
  4. Gill MW, Scott DL. Can patients benefit from reading copies of their doctors’ letters about them? BMJ 1986;293:1278–9.[ISI][Medline]
  5. Cowper DM, Lenton SW. Letter writing to parents following paediatric outpatient consultation: a survey of patient and GP views. Child Care Health Dev 1996;22:303–10.[CrossRef][ISI][Medline]
  6. Damian D, Tattersall MH. Letters to patients: improving communication in cancer care. Lancet 1991;338:923–5.[CrossRef][ISI][Medline]
  7. McConnell D, Butow PN, Tattersall MH. Audiotapes and letters to patients: the practice and views of oncologists, surgeons and general practitioners. Br J Cancer 1999;79:1782–8.[CrossRef][ISI][Medline]
  8. Jelley D, Walker C. Shouldn’t everyone know what is being written about them? Copying letters to patients. A pilot study in Northeast England, 2002. (www.doh.gov.uk/patientletters/).
  9. Scott JT, Harmsen M, Prictor MJ, Entwistle VA, Sowden AJ, Watt I. Recordings or summaries of consultations for people with cancer (Cochrane Review). Cochrane Library, Issue 3, 2004. Chichester, UK.
  10. Nandhra HS, Murray GK, Hymas N, Hunt N. Medical records: doctors’ and patients’ experiences of copying letters to patients. Psychiatr Bull 2004;28:40–2.[Abstract/Free Full Text]
Accepted 5 October 2004