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Personal Views Personal views

A patient's eye view of quality

BMJ 1999; 319 doi: https://doi.org/10.1136/bmj.319.7208.525 (Published 21 August 1999) Cite this as: BMJ 1999;319:525
  1. Claire Rayner, president
  1. Patients Association

    One of the difficulties of being a patient is the way ordinary words are given medical meanings. “What are you complaining of?” means, to a patient, “What are you whining and moaning about?” To a doctor it means, “What's your problem?” Similarly, “The procedure was explained and the patient reassured” looks good on nursing notes, but would startle the patient who could not understand the explanation.

    Can't you, with such a superior service to offer, do the same?

    The word “quality” is the new buzzword, with everyone in the health industry telling everyone else what quality is and how to achieve it. But who is talking to the patients, or, more importantly, listening to them? Their definition of quality does not necessarily match with yours.

    The Patients Association collects the views of patients and offers them to healthcare professionals. I now offer them to you.

    So, what does the word quality mean to us? In general terms we need to feel total trust in the system and the people in it who care for us and our families when we are ill. We need to be sure that all staff have been fully prepared for their work by the right sort of training, have the right sort of supervision at all levels, and are listed on a register which ensures the employment of eligible staff only.

    We need to be sure that the staff have decent working conditions and remuneration. We know perfectly well that unhappy workers cannot give of their best. We need staff to remember how vulnerable we are Patients may simulate self confidence and peace of mind to make themselves look sensible, but in reality it is rare for any individual to speak to a doctor or nurse about their condition without being anxious. And while no reasonable patient would ever condone violence or even rudeness to a hospital worker, many complain to the Patients Association of unpleasant attitudes from healthcare workers and say that that engenders similar behaviour from them.

    These are general needs. What are our particular ones? In all healthcare units we need appointment systems that work allied to telephone systems which allow us to make changes; otherwise we are unjustly labelled as “do nothing abouts.” We need efficiency in your dealings with us. Failure to let patients know the results of tests over which they are worrying themselves even sicker causes great distress. In the general practitioner's surgery we need clear explanations if we are no longer persona grata. One of the commonest complaints is of being struck off a list without explanation.

    We need to be sure that we will continue to get the treatment and drugs we need however expensive we may become. Older people worry a great deal over this. We need careful assessment of how far we should be involved in our care. We understand that on the one hand the majority cry out for explanation and honesty, but some patients may suffer from information overload and find it easier to cope without too much on offer.

    When in hospital we ask for concern for our dignity: screens and lowered voices and a private corner for discussion wherever possible. Lack of concern for the dignity of the elderly in particular is rife, with current standards appearing to be shamefully low.

    We need attention to our creature comforts and sensory experiences. Noise is a most cruel absence of care, said Florence Nightingale, and so are foul smells and inadequate efforts made with ventilation and room deodorising to help patients who, if they are the source of the smell, suffer much distress. We also need reasonably good, well served food if we have to live in hospital for more than a few days.

    We need to feel the service is free of holes through which we can fall. The right communication between general practitioner, hospital, day surgery unit, community nurses, etc, is vital.

    How is all this to be achieved? There will be lay members on primary care groups, though only one per group. We believe we need patient liaison groups all through the NHS, with each group including active members of special illness interest groups, and citizens' juries and consensus conferences to look at national NHS issues, such as rationing, postcode prescribing, and end of life care, including the use of advance directives.

    Finally, may I ask you to learn from the alternative therapists? A wide range of untrained individuals are out there collecting sizeable fees in exchange for all sorts of nonsense. It's true that there is some wheat among the chaff, but it's hard to pick it out. What these people have in common is a willingness to listen, to take time, to offer the sort of language with which they are at ease. This is why there is the current flight from science into quackery. Can't you, with such a superior service to offer, do the same? I believe you can.

    Footnotes

    • If you would like to submit a personal view please send no more than 850 words to the Editor, BMJ, BMA House, Tavistock Square, London WC1H 9JR or e-mail editor{at}bmj.com

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