RIGHTS OF PATIENTS BILL (Hansard, 22 January 1974)

§ Mrs. Joyce Butler (Wood Green)

I beg to move, That leave be given to bring in a Bill to clarify the rights of patients to privacy when receiving hospital treatment under the National Health Service, and in regard to medical experiments on human beings. The subject of consumer protection as it affects the health service is a very big one, but in this Bill I wish to draw attention only to two aspects which worry a great many people and about which I have received a considerable number of representations.

When people become ill or suffer injury and require hospitalisation, it is an additional worry to many of them to feel that they seem to have lost the right of control over their own bodies. When the hospital is a teaching hospital and they find themselves suddenly surrounded by a group of students and made the subject of a lecture, many of them are very embarrassed and upset by this procedure.

Recognising this, about a year ago, the Department of Health and Social Security issued guidance to hospitals stressing the need to inform patients that they had a right to refuse to co-operate in teaching if they wished. It also stressed the importance of consulting patients about teaching when the teaching was about to take place. Despite this guidance, it is clear that it is not being followed in many cases and that it is quite usual for patients not to be warned or consulted. Sometimes they have pressure put on them, and many are quite unaware of their right to refuse to co-operate in teaching.

Doing as the Ministry recommends and requiring consultation with patients need not be time wasting, and I do not think that it would reduce materially the number of patients available for teaching purposes.

Many people quite like and enjoy being the centre of attention, even when they are in hospital, but the Bill would ensure that those who are particularly sensitive, nervous or unwilling, have the right to refuse teaching if they cannot face it.

Many cases have been drawn to my attention. One concerned an 18-year-old girl who attended as an out-patient for an internal examination. She was quite 1484 appalled when the doctor came into her cubicle accompanied by a female student and several male students, but she was far too upset to complain. The whole procedure put her off completely.

Another woman, who was admitted to hospital with acute abdominal pains, failed to find out what was wrong from either the consultant or the registrar until, on the fourth day, the surgeon, surrounded by 12 students, told her to lie on top of the bed, to lift up her nightgown, and to lower her pants slightly, whereupon the students proceeded to pressure and prod her and discuss her case and were invited to suggest what was wrong with her. At the end of this procedure the surgeon said the trouble was a ruptured ovary. The point is that she had no idea that this would happen. She had not been consulted and she did not know that she had the right to refuse.

Apart from the embarrassment at the time, this kind of early traumatic experience can prevent people, when they are later ill, seeking the treatment that they should have. This is a serious matter if it has that effect.

Because this lack of respect is often shown to patients, the Bill seeks to write into the law the right of patients to hospital treatment with only those persons present who are necessary to provide the treatment and ensures that a patient's consent must be given before anyone else is allowed to attend.

The second part of the Bill is concerned with what are sometimes called human guinea pigs—patients who are subjected to clinical research investigations.

About six-and-a-half years ago, as a result of public concern about this matter, the Royal College of Physicians recommended that hospitals should set up ethical committees to vet these schemes for clinical research investigation. This guidance was welcomed by people generally, particularly by the Patients' Association, which has done an incredible amount of work in the Health Service for the public. Since then ethical committees have been established by all hospital management committees, except in the few cases where no clinical investigation is undertaken. So far so good.

As ethical committees are necessary not only to safeguard patients but to 1485 assist and safeguard doctors and reassure the public, their constitution, functions and the procedure that they follow is not just a matter for professional bodies. The community has a vital interest, too.

For this reason, the Bill makes it mandatory for each of the new Area Health Authorities, which will operate on 1st April, to appoint an ethical committee for every National Health Service hospital or group of hospitals in its area. It clearly lays down that the ethical committee's function shall be to consider all aspects of medical experiments on human beings in hospitals, that all experiments which are not intended to benefit the individual patient must be sanctioned by the ethical committee and the patient must consent thereto. All such patients must be genuine volunteers and fully aware of what is proposed.

To ensure that the public view is adequately represented, the Bill requires that one-fifth of the members of each ethical committee shall be lay members not employed in the Health Service. Naturally, these lay members will have to accept the medical assessment of the risks and possible benefits of the experiments, but they could and should take part in the discussions that go on.

It is also desirable that the ethical committees should interest themselves in the methods by which these research projects are to be carried out, that they should see the written consent of the patient concerned, and that they should ensure that the same groups of patients are not used again and again.

I believe that, without hindering progress, an adequate number of lay members on ethical committees would end the danger of bad or wasteful experiments and would help to concentrate efforts and funds in the best possible way.

The House will see that this is quite a modest, but I believe an important, Bill. It provides a charter for patients which will reassure everybody who has to go into hospital, relatives and friends, and the public at large.