This email is in response to Dr Shepherd's request (Medical & Welfare Bulletin, no 4) to hear from anyone who has experienced problems in the area of informed consent. It describes two periods of treatment which I underwent against my wishes in 1991 and 1992 and the ways in which consents were obtained for these periods of treatment.
In this public version, names have been changed to protect the identities of those involved. The names King, Jacobs, Parkvale and Highmoor are pseudonyms.
I contracted ME in 1986 when I was aged 32. It followed three virus infections in succession at a time when I was exhausted from overwork. I did not have the energy to cope with shopping and cooking so I went to live with my parents. Instead of allowing me to learn how to manage my condition, they took control of my life and began managing my condition in a way that I thought completely inappropriate. I became first housebound, then confined to one floor of the house, then bedridden. I knew that in order to have any hope of getting better I needed to get away from my parents, but they would not agree to my going into a nursing home.
In June 1991 my GP came to see me and told me that he knew a man who might be able to help me. My father subsequently informed me that a specialist named King was coming to see me. When the specialist came he spent half an hour talking to my father out of my hearing and then came into my room to ask me a few questions. He said nothing about the nature of his specialism. After he had gone, my father told me that I was being offered a place in a rehabilitation centre.
The next time my GP came to see me he asked me whether I agreed to be admitted under Dr King's care. He told me, "If it's not what you were expecting, all you'll have to do is say so and you'll be allowed to leave." I gave my consent, not because I wanted to be rehabilitated but because I had an urgent need to get away from my parents and this seemed to be the only option that they were willing to agree to.
After a five-month wait I was admitted to Parkvale, the local general hospital, in preparation for being transferred to the rehabilitation centre. On the morning before I went into Parkvale, my GP came to see me. During his visit he mentioned – for the first time in my hearing – the name of the rehabilitation centre: Highmoor. The name meant nothing to me.
As expected, my condition began to improve as soon as I was away from my parents. While I was in Parkvale I often heard the name Highmoor and soon realized that it was the name of the local psychiatric hospital. When I asked my father about it he told me that the rehabilitation centre was attached to the psychiatric hospital so that the psychiatrists could be on hand to give some psychological input to the rehabilitation process.
Dr King, together with a Dr Jacobs, came to see me a few times at Parkvale, and during one of these visits he revealed to me for the first time that he was a psychiatrist. I found this very disturbing. I would never have consented to his becoming involved in my case if I had known – which of course is why my father had been careful to conceal this fact from me.
When I had improved sufficiently to be able to walk short distances, I was told that I was being transferred to Highmoor. No consent was asked, but the consultant in whose ward I had been assured me that:
I was taken by ambulance to Highmoor Psychiatric Hospital, which is situated on a hill outside the town, and left on a ward which proved to be populated by able-bodied, mentally disturbed patients – schizophrenics, manic-depressives and the like. One of the female patients was violent. This clearly was not a centre for rehabilitating patients who were physically handicapped or recovering from long-term illness. It might be a rehabilitation centre in some sense, but it was definitely not what I had been led to expect. I had been tricked.
As soon as I got to see the doctor in charge of the ward, who turned out to be Dr Jacobs, I told him that this was not what I had been expecting and that I wanted to leave. He refused. He told me that my illness was psychiatric and that I had to remain at Highmoor until I was fully recovered. We continued to argue about it for the next two weeks. I said that I wanted to go back to Parkvale or to my parents' house. He said that it was not appropriate for an ME sufferer to be treated on a medical ward because ME "comes under the psychiatric umbrella". When I objected that ME had a physical basis he said he accepted this – but depression and schizophrenia also had an organic basis. ME was in the same category: a psychiatric illness with an unknown organic basis. He also said that owing to pressure on beds in the NHS there would not be a bed for me at Parkvale. When I told him that I had been sent to Highmoor for assessment and my bed was being held for me at Parkvale he said he knew nothing about that.
When my parents came to see me, they too were taken aback by the nature of the patients with whom I had been placed, but they still wanted me to stay there. They said they had been told that it was the best rehabilitation centre in the area.
I was not under any restraint, but although I had improved considerably while at Parkvale, I was still too weak to leave the hospital unassisted. I needed to be taken out either in an ambulance or in my father's car, and he was not going to take me away without the psychiatrists' approval. The only way I could leave was by persuading Dr Jacobs to release me.
Towards the end of the second week, with my condition in sharp decline from the physical activities I was being made to undertake, I gave up arguing with Dr Jacobs and just kept demanding over and over again to be let out. In the end it became too difficult for him to keep up the pretence that I was a voluntary patient. He was forced to discharge me and my father took me home.
I was treated throughout as if I were not competent to give or withhold consent by reason of my alleged mental illness. During the two weeks of my detention Dr Jacobs kept in touch with my father by telephone and I very much doubt that he would have continued to hold me at the hospital had he not had my father's consent and approval. My own objections, however, he treated merely as part of the mental illness of which I needed to be cured. In effect I was detained on the basis of my father's consent.
About a month after my release from Highmoor, my father took me back there for an outpatient appointment with Dr King, the psychiatrist who had originally visited me at my parents' home. On our arrival Dr King asked me if I agreed to my father being present during the consultation. I most certainly did not want my father present as it would mean that I would effectively be gagged: anything I might want to say would anger my father and I was too dependent on my parents for food, shopping, transport etc. to be able to risk antagonizing them. However since Dr King asked me right in front of my father I had no alternative but to agree. Dr Jacobs was also there, so it was three against one.
Dr King talked until I was exhausted, then started trying to persuade me to consent to be referred to a psychiatric day centre. Given a choice I would have refused, but as my father was there I had to agree. Besides, if I had not agreed, the psychiatrist would have gone on trying to persuade me, and I was too exhausted to allow the consultation to go on any longer.
When my father took me to my first appointment at the day centre, I was seen by the charge nurse. I told him how I had been tricked into consenting to be admitted to the rehabilitation centre at Highmoor. He asked which ward I had been on. When I told him he said, "That's not the rehabilitation centre. There is a rehabilitation centre there but that ward is a ward for patients suffering from severe mental disturbance."
He asked me why I had been referred to the day centre. I told him that Dr King had sent me there in order to give my father the impression that I was receiving psychiatric treatment, and that attending the centre would not be of any benefit to me. Nonetheless he made a regular appointment for me to attend the centre each week. My father of course took me to attend these appointments: he still believed that I needed psychiatric treatment. In addition I was afraid that if I failed to attend appointments that had been made for me, the DSS would be informed and would stop my benefit on the grounds that I was refusing treatment.
Each week I sat in a room watching middle-aged ladies having scented oil rubbed into their palms and occasionally participated in a game of Scrabble. On one occasion when this had been going on for some months, the charge nurse asked me if I had come to the centre "for a game of Scrabble". I told him that I came to the centre because I had to and that nothing that went on at the centre was of the slightest interest to me. He was surprised that I still felt this way and proposed that I be discharged – to which I readily agreed.
All these events occurred because my father did not want me to have the conditions which I wanted, viz being able to manage my illness in my own way, and instead wanted me to have a type of treatment which he knew I would never agree to. Particular problems regarding the validity of consent may arise when the patient and carer disagree about the type of treatment that is appropriate.
When Dr King asked me to consent to be referred to the psychiatric day centre, I had to agree because my father was present. In some cases the mere presence of a carer may constitute undue pressure to consent. In others the presence of a carer may save the patient from feeling under undue pressure from the doctor. Therefore the patient should be given a free choice as to whether a carer is present or not when consent is asked.
Dr King did in fact ask me whether I agreed to my father being present, but because my father was already present I could not refuse without offending him. Whenever a patient is asked whether he agrees to a carer being present – or being involved in any other way – this must be done in the carer's absence, otherwise it is meaningless.
When my GP asked me if I consented to be admitted under Dr King's care, he did not tell me that Dr King was a psychiatrist or that I was to be admitted to a psychiatric hospital. He had obviously discussed these matters with my father and may have assumed that my father had passed the relevant details on to me. When a doctor asks a patient for consent, he should briefly summarize the relevant facts even if he believes that the patient has already been fully briefed.
There was a gap of five months between my GP obtaining my consent and my admission to Parkvale. Where there is a delay between consent being obtained and the commencement of treatment, the patient should be informed again about the proposed treatment and asked again if he consents to it shortly before treatment begins. The patient's situation may have changed, the details of the treatment may have changed and the doctor may no longer remember exactly what the patient was told or what he consented to.
If the police had wanted to hold me for questioning about a crime, they would have had to inform me of my rights, offer me the opportunity to have a solicitor present and apply to a court for permission to detain me. But because it was a psychiatrist claiming that I was mentally ill, I was not informed of my rights, I had no representative or independent advisor and I was detained against my will for two weeks without a court order. The moment a psychiatrist becomes involved, the patient's rights seem to evaporate. A sick person's rights should be protected to at least the same extent as those of a suspected criminal.
Both my GP and the consultant at Parkvale assured me in effect that I would not be detained at Highmoor against my will. Yet this is precisely what happened to me. Their assurances were of no value because the psychiatrist was not bound by assurances that had been given by other doctors. When a doctor refers a patient for treatment elsewhere he should not assure the patient that his rights will be respected: the doctor cannot know this. Instead he should tell the patient what his rights are and what to do if those rights are infringed.
Dr Jacobs did not know what I had been told by my GP or by the consultant at Parkvale. Where a doctor obtains a patient's consent then sends the patient elsewhere for treatment, the patient should be given a written statement of the proposed treatment before being asked for consent. The statement should preferably be written by the person who will be administering the treatment, but where this is not the case, that person should receive a copy of the statement. This would have the following advantages:-
Dr Jacobs never accepted that there was anything physically wrong with me. He may therefore have regarded the fact that I "chose" to remain on the ward – rather than walking out of the hospital and going home – as equivalent to consent. Similarly the charge nurse at the psychiatric day centre may have regarded the fact that I continued to attend appointments as equivalent to consent. Imposing a treatment régime on a patient and seeing whether he puts up with it is never an acceptable alternative to obtaining consent.
I did eventually get what I needed – a flat to live in and homecare for the shopping and cooking. This gave me the freedom to learn how to manage my condition and by this means I have achieved a substantial improvement.
Colin Taylor
20 Dec 2001