The UK government's demand that patients should read doctors’ correspondence with each other will end in tears.
In 2000, the UK Department of Health brought out the NHS Plan, laying out its policies to transform the National Health Service into ‘a health service for the twenty-first century (1). Paragraph 10.3 has an inoffensive enough demand, which has medical secretaries all over Britain – the unsung, underpaid heroes of the NHS – tearing out their hair.
From April 2004, the aim was that all communications about patients would be forwarded to the patients. This sounds reasonable enough, but is a worrying prospect for doctors and administrative staff. Many feel that professional discussions will be restricted, and precious resources wasted on a scheme that seems more aimed at achieving the political goals of openness and transparency than serving the best interests of patients.
As things stand currently, if you see your GP, who refers you to hospital for a specialist review, the specialist who sees you will communicate his findings by letter to your GP. He might refer you to another specialist, also by letter. Some hospital specialists also write directly to the patient, to reiterate what was said in the consultation, but this would usually be a different letter to the one received by your GP.
Now, in the name of openness and patients’ rights, you will receive copies of all of these letters. ‘I want to put the patient at the centre in every part of the NHS’, said health secretary John Reid in November 2003, advocating the ‘CL2P’ initiative, as it is known by its supporters (2).But is this as sensible or desirable as it sounds?
It is irritating that this move is being touted as a major breakthrough in patients’ treatment by the NHS. Many hospital doctors already do write directly to patients about their treatment and investigations. Patients are routinely given leaflets and literature about whatever treatment they are receiving.
The pressing needs of most hospitals are for more doctors, nurses and equipment to carry out treatment. With limited resources in the NHS, more communication cannot always be a priority. The district general hospital I last worked in estimated that the whole ‘letter copying’ exercise would cost at least £200,000 per annum. As one medical secretary put it to me, ‘I’m sure the phone would never have stopped ringing, with people not understanding the letters, wanting explanations – and I just haven’t got time to deal with that’. Not surprisingly, the scheme has been quietly ‘temporarily shelved’ in my hospital and others.
However, these practical issues are resolvable, with sufficient resources. And there are good arguments for patients to receive letters about their condition. Most doctors are very much in favour of more communications with patients. Often in a busy outpatients’ clinic, there are important decisions to be made, and it is helpful for patients to have some written adjunct to the discussion in clinic, either in the form of leaflets or a personal letter from the specialist who saw them, reiterating their discussion.
But there is a more fundamental problem underlying these changes. Improving communication between doctors and patients is not the same as routinely giving patients access to communication between doctors, as these new changes demand. Do we want to allow a level of communication between professionals that patients will not always understand, at least without explanation? This sort of frank communication is likely to be hampered by the new ‘letter copying’ scheme, to the detriment of patients.
Why should doctors want to mention, in correspondence with each other, things that patients would not understand, or things they would not wish to talk about in front of patients? There are many situations where this is important. For example, a newly diagnosed cancer patient will be put though a system known as ‘staging’ – a system that is different for different cancers, and which takes into account the size of the tumour, and the degree of local and distal spread. A surgeon, seeing this patient, will write to an oncologist colleague for input into the management of the cancer. This staging system will mean little to an individual patient, who previously knows nothing about their cancer or its treatment, and will not be able to put the information in any context.
A few figures and letters will quickly sum up to a consultant oncologist much about potential treatment options, and general prognosis – allowing the appropriate care to be administered as quickly as possible. But patients who are coming to terms with the shocking news that they have cancer may not feel up to taking on board enormous amounts of new information in a seemingly different language. Is it really in their best interests to have this unmediated information divulged to them?
It is important to differentiate between open and honest communication, and expecting patients to become experts in their illness. I feel often it is harsh to over-burden patients with information and language they are not equipped to deal with. A breast care nurse I worked with used to tell women newly diagnosed with breast cancer, ‘Whatever you do, don’t look on the internet’.
I think we doctors have to remember that dealing with illness is our job – we are experts, and part of our professional responsibility is to be kind about how we talk to patients about what is wrong with them. It should not be up to the government to intervene and regulate how we do this. Nor should the principles of transparency be used to determine how doctors communicate with other doctors. There should be no place for ‘tact’ when discussing patients with colleagues, as this might potentially compromise patients’ care.
In the end, it should be up to doctors, not politicians, to decide how we communicate with patients and each other.
Liz Frayn is a surgical trainee working in south-west England.
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