Disabilities

1050 that you have relinquished the procedure set out in the parts of the charge which have been found proved." Dr. Lyburn asked whether, if he spoke as a politician during the coming election, he would be breaking the rules of the council, which he was loth to do ?‘? The President : You will have to decide that for yourself. ADJOURNED JUDGMENTS

The council did not direct the registrar to erase from the Register the names of the following practitioners who appeared for postponed judgment : William Melrose, registered as of 15, St. Paul’s Square, Liverpool, L.R.C.P.E. (1924) ; Reuben Denny, registered as of 64, Twyford Avenue, Acton, L.R.C.P.E. (1929) ; and Archibald Thomas Macmaster Glen, registered as of 16, Telford Avenue, London, S.W.2, L.R.C.P.E. (1935). NAME

REMOVED

Arthur Mervyn Rhydderch, registered as of Coppelia, Clements Road, Chorley Wood, Herts, M.B. Camb. (1937), M.R.C.S. (1926), had had judgment postponed in November, 1948, for two years, following convictions for driving and being in charge of a motor vehicle whilst under the influence of drink ; he was directed to appear at the council’s session in November, 1949. He had since been convicted for a different offence. After taking evidence in camera, the council directed the registrar to erase his name from the

Register. RESTORATIONS

The President announced the restoration to the of the names of David T4’illian Jones and Duncan Morison. Council Affairs

Register Metcalfe

Prof. R. J. Brocklehurst presented a report from the education and examination committees acting jointly. On the assumption that legislation might be introduced at an early date to give effect to the recommendation1 of the Interdepartmental Committee on Medical Schools

regarding compulsory house-appointments as a preregistration requirement, the committees have held a preliminary discussion of the conditions to be attached to such appointments. The committees recommended that the council should

request the licensing bodies, as soon as they are in a position to do so, to furnish information as to changes made by them since the publication in April, 1947, of the recommendations of the council as to the medical curriculum, in the courses of study and examinations for qualifications conferring the right of registration under the Medical Acts. The committees also recommended that the council should resume the visitation of examinations for qualifications conferring the right of registration under the Medical Acts, and that the first should be on examinations in social medicine and public health, pharmacology and therapeutics, and forensic medicine. The President presented the report of the Pharmacopoeia committee, of which he is chairman. Sales of the new British Pharmacopcria from May to November, 1949, were 2739 copies, bringing the total sales to 38,182. The British Pharmacopoeia Commission has selected material to include in an Addendum to the British Pharmacopaeia to be published towards the end of 1950. The commission has also reviewed the comments, criticism, and suggestions for the British Pharmacopceia, 1953, and drawn up a tentative scheme of contents. The commission has accepted an invitation from the Scandinavian commission to cooperate in the selection of names for new drugs. The commission has discussed with the Home Office the question of excess volume in ampoules. It regards this as an advisable and legitimate pharmaceutical practice, and it is hoped to overcome difficulties which have arisen in the administration of the Dangerous Drugs Acts. STAFF APPOINTMENTS

At the end of the session it was announced that Mr. Walter Kinnear Pyke-Lees, assistant secretary of the council, has been appointed registrar in succession to Mr. Michael Heseltine, C.B., who is retiring not later than September, 1951. Mr. Martin Robert Draper has been appointed assistant registrar. 1.

Goodenough Report, p. 196.

Disabilities 43. HaeMOPHILIA WHEN I am asked " What is haemophilia and how does it affect you? " I can reply, quite literally, that it is an everlasting bloody nuisance. I cannot emphasise too strongly its everlasting nature, for my friends and relations, and even some doctors who have attended me, think that I am not ill at all except when I am actually bleeding. But in fact the haemorrhages are the final and most dramatic manifestations of a disease whose constant but less striking physical and mental effects harass the unfortunate sufferer all the days of his life. I refer specifically to the ankyloses, contractures, adhesions, fibroses, peripheral anaesthesias, and areas of impaired circulation resulting from successive haematomas and haemarthroses, coupled with the debilitation resulting from prolonged anaemia and almost constant pain. My haemophilia was first diagnosed at the age of 5 months when a cranial haematoma followed a fall. From then until the age of 19, when I was first given effective treatment, I was never free from haemophilic haemorrhages for more than six weeks at a time. It was rare for one lot of effusions to have cleared entirely before another bout of bleeding (usually internal) started. There was always a traumatic cause for every haemorrhage-a strain, a blow, or a cut-but sometimes this was so trivial as to seem almost fanciful. It doesn’t take much to bruise an over-ripe tomato, and that is what a haemophilic is like. (Incidentally, I wish that doctors and students, before they handle haemophilics, would practise juggling with over-ripe tomatoes until they have developed enough delicacy of touch to avoid damaging the squashy fruit.) Very early in life I became puzzled about why I was treated differently from other children in general and from my brother in particular, he being a little older than me and not a haemophilic. My life was a constant Don’t do that ! Don’t go there ! and if I did, what a row there was. But such restrictions did not apply to my brother or other children, and I got more and more worried over this unfair discrimination that seemed to be directed solely against me. Then, one day, in a friendly tussle with some children, I lammed out and unfortunately caught a little girl a fourpenny one, when she bawled the place down, with the result that I was reprimanded and told that " little girls must be treated more gently than little boys because they are different." What a relief this remark was to me, for I immediately thought that must be the answer to my problem-I must be more careful than other children because I was a little girl, and girls were more delicate than boys. But this pleasant theory was soon exploded. My short hair, my clothes, and the fact that I started going to a boys’ school made it plain that I was on the wrong track and back came the misery and worry. My life was a constant oscillation between attempted normal activity and being bedridden after a tumble while a mysterious lump came up, usually in a joint, got " red hot " and excruciatingly painful, and then slowly dispersed, at which stage I began to hobble about again. Then after a few days of progressive activity the cycle started all over again, and again, and "

"

again. When I

was six I was called to the headmistress’s to be shown to the school inspector, to whom she described me as " a bleeder." I had just become

study

acquainted with the expression " a bleeding nuisance," so I naturally associated the word bleeder with this and became even more miserable ; for of course every time a haemorrhage started I was thoroughly nagged, albeit well-meaningly, for falling over, bumping into

1051

something, or being bumped by somebody. It was not deemed worthy of consideration that these trifling collisions mean nothing to non-haemophilic people and that it is impossible, in normal surroundings, completely to avoid them. Nor was I ever praised for avoiding major catastrophes by prodigious efforts and continual watchfulness. All blame and no praise produces appalling unhappiness, whether in a child or an adult, and makes him feel that he is indeed a " bleeding nuisance " to himself and everyone else.

By the time I was seven I was able to report to the doctors that my bleeding bouts came in fortnightly phases. In one fortnight I bled seriously from even the most trivial causes, whereas in the next fortnight I bled seriously only if the injury was severe enough to cause bruising in normal people. But my perspicacity was unrewarded and nobody took any scientific interest in this observation. It was not until many years later that I worked out the precise periodicity of this monthly cycle, so that now I know that there are twelve fortnights in the year when I must be extra specially careful and twelve fortnights when I can relax my vigilance a little, with progression and regression from one to the other; and I try to adjust my life accordingly. This monthly phase is complicated by a seven-year and other less easily recognisable phases. From my birth to the age of 7 was a bad time, from 7 to 14 was less severe, and from 14 to 19 was very bad. Since then treatment has made it difficult to detect the seven-year phases. I missed something like a third of my schooling through the recurrent haemorrhages, and even when I could attend school the pain and discomfort, coupled with the characteristic lethargy of the malady, made me often inattentive, for which the thoughtless and unimaginative master was apt to punish me. In spite of these handicaps I always went to the top of the class in most subjects on the rare occasions when I had a fortnight It seemed a or more at school without interruption. harsh and unjust reward for my efforts that my end-ofterm reports invariably included the phrase, " This boy has brains but is too lazy to use them." So nowadays I find that my education is like a book with a page or two missing from every chapter. It is embarrassing when I am faced with some elementary mental exercise, like 7 times so and so, and find that the 7-times table is a missing page in my knowledge, because I was away with a haemorrhage when my class did that one. The feeling that I was unpleasantly different from my fellows persisted and was aggravated by day-to-day occurrences. It was humiliating having to take a letter- to school asking to be excused all sports, after I had been desperately ill several times following trifling accidents on the field. As the headmaster was the cricket-and-soccah type I became in his eyes something lower than the lowest form of animal life to the end of my school days. In 1933, when I was in my early ’teens, I was put in a hospital ward with two other haemophilics, and after a few chats we realised with a wonderful sense of relief that we were not each a unique monstrosity, but that there were others who led our sort of life and who had to face our sort of problems. I then and there resolved to form a club or society of hsemophilics in which each could help the other over their stiles. But alas for the resolves of a haemophilic ! The exacerbations put paid to any major project of this kind, and it was not until 1942 that the International Haemophilia Society was formed. Nobody but other haemophilics seems willing to help us with our difficulties. Help may be forthcoming once, twice, or even thrice, but the hsemophilic’s condition is everlasting, yet so erratic that he can be completely independent in the morning and bedridden and hopelessly dependent on others by the evening, often without warning, so that no provision can be made.

The worry and strain of this continuous Sword of Damocles hanging over the heads of hsemophilic families any chance of social and domestic well-being. Then in adult life the inability of the hsemophilic to be a breadwinner all the time, though it is not his fault+ often produces that sordid bickering state well known to social workers. Inevitably therefore the haemophilic leads a lonely life, .for his physical condition is too uncertain to enable him to go out or clear out, and poverty, which is inevitably the lot of most hsemophilics, makes it impossible for him to play host to anyone he feels an affinity for. I am amazed how seldom the healthy and fortunate will help the disabled in the many ways open to them. For example, many people with cars know that I am often stuck in the house for days or even months on end while recovering from one of my heavier losses of blood, but they never offer to take me out for a change of scenery once in a while. Is it surprising therefore that the disabled haemophilic becomes morbid when he sees cars floating by with bags of room for a disabled passenger ?’! It is only when the hsemophilic can afford to hire orown a car that pleasure and regular work are possible in his life. With a car to take him about the hsemophilic can hold down a full-time job for years, with little more than average sickness absenteeism, whereas the hsemophilic who has to rely on the vicissitudes of public transport cracks up in no time. A car is a desirable amenity to most disabled people ; but to the hsemophilic it is a vital necessity. Apart from the periodic lethargy that foreshadows a " bad " phase, haemophilia does not impair one’s physical or mental health unless some bleeding has taken place; and since bleeding occurs only as a result of trauma one has merely to avoid all trauma and one will prevent the consequent crippling and paralysis. Q.E.D. In practice, of course, it is impossible to avoid all trauma,. but that should be the main aim of the hsemophilic’s daily routine. Just as the diabetic has to adhere to a strict diet, so the hsemophilic must follow an equally strict anti-traumatic regimen. And just as the diabetic’s blood-sugar level may go up unpredictably, so does the hsemophilic’s blood-clotting function vary, often unpredictably (in my case, as I have said, there is a definite monthly phase). We hsemophilics have as yet no simple urinalysis to tell us when special care is necessary and there is a limit to the number -of blood tests that can be taken day by day. So our life-long motto must be " eternal vigilance." Of the 30-odd treatments tried on me, only onean antihsemophilia egg-white derivative 1-has stopped or prevented the bleeding as and when required. Of the remainder, sunlight, diathermy, physiotherapy, and vitamin concentrates have improved my general

impairs

health,

particularly

during

post-haemorrhagic

con-

valescence. Local styptics I have found useless and sometimes harmful. Blood-transfusion has a secondary anticoagulant effect in me and I have to refuse it. The benefits of manipulation can be more effectively obtainedby safer means. Analgesics, though sometimes necessary, must be taken with caution ; aspirin, for instance, is an anticoagulant and risky for the hsemophilic. I am sure that clinical trials of hsemophilic remedies often fail because the natural variations in the The haemophilic disease are not taken into account. usually reaches hospital in a " bad " phase, because that is when emergency haemorrhages occur, and the improvement in blood-clotting which can spontaneously follow this phase may well be credited to the treatment applied. Conversely, if a treatment is tried when a "bad" phase is due it may be unfairly condemned. 1.

Timperley,

W. A., Naish, A. E., Clark, G. A. Lancet, 1936, ii, 1142.