Transcription of interview with Dr Murray Sandland of Melbourne, Australia conducted by Jeanette Hyland for the Global Project on the History of Leprosy.
I’m talking to Dr Murray Sandland in Melbourne. Murray worked at the Fairfield Exotic Diseases Hospital in Melbourne and looked after Leprosy for many years and he is going to tell me some of his background in that and some of the stories.
The Exotic Diseases Hospital was opened some time in the late 1940s, I’m not sure exactly, having been planned for other exotic diseases when sulphone therapy became available, then people were isolated there.
There were three main groups of people at Fairfield. There was a group of Maltese migrants who came soon after the end of WW2; then in the early 1970s a significant number of Indians and Sri Lankans; then from the fall of Saigon in 1975 through to the early 1990s, then we would have something like half a dozen new Vietnamese people a year and a few Cambodians from 1980.
So can I ask about the legislative background against which you worked – people who were diagnosed with leprosy in the early days, they were required to be isolated in the hospital itself?
Yes, they were and the question was ‘How long?’, and in the early days of the disease treatment when you only had bacteriostatic sulphone drugs, the problem was taking skin smears every few months and trying to work out if you had enough dead organisms that you could say that the patient wasn’t a risk. So we tended, I guess, to keep people in for a fair length of time. Certainly those who had multibacillary forms of the disease tended to be there for at least a couple of years; whereas, for people with Tuberculoid, paucibacillary forms of the disease, it was a very much shorter time, unless they developed reactions in which case they might have been there a bit longer. There was a particular lady of Indian extraction who was referred to us, I can’t remember the exact date of that, but I suppose it would have been in the early 1970s, who when the diagnosis was made, was very anxious not to be admitted and she obtained starting doses of drugs from a dermatologist who was prepared to treat her privately.
But then when she discovered that the cost of Rifampacin was going to be huge because she wasn’t prepared to say why she was taking it, then she was moved to a hospital. She caused a great deal of trouble for herself as well as her husband and for us, by challenging this. Actually she thought she’s found friends in one of the commercial television stations interested in difficult medical things, but what she found was that it backfired because her husband’s colleagues who worked at the Post Office discovered that they were working with the husband of a leprosy patient. They then asked that he be given the boot from his job so that all sort of backfired. But - what did happen was that because of all the fuss about this, the Health Department started to be a little unclear about whether we were right to be keeping the people as long as we were. They asked Grace Warren to look into this. Grace in her very forthright way decided she was going to take a very independent line about this and so she reported to the health department and I guess at that stage that multi-drug treatment was starting – not officially, but starting – to be used. After we started to use combinations of Rifampacin, Chlorphazamine and Dapsone, the patients obviously were becoming non-infectious quite quickly. This meant that by 1979 there was only one long-term patient in the leprosarium. He was a man who was really looked after there to protect him rather than protect the community in the sense that he had virtually no feeling except on one shoulder. He worked round the grounds as a handyman, but he would go and get a screw driver for example from the shed and walk back to screw up something on the lawn mower, and discover it wasn’t in his hand when he got there.
He couldn’t feel it.
He didn’t feel that it had gone. So in 1979, the leprosarium was closed. It had had its own cooking staff and own nursing staff and shared staff with Fairfield. One of the things that I remember that was quite curious about it, from my point of view, was that when one went over there; there were two doors to go in with two fingerplates. One was the one that the patients touched and the other was the one that the staff touched. They were at right angles to each other in a portico with this unusual box-shaped feature. Everybody entered through the same door, but patients pushed different doorways open to get in.
That is fascinating because when I was doing my training in Karigiri we had lectures from Dr Job the famous pathologist Still one and chairman of the Leprosy Mission now – and he was telling us that in the early days there when he came home from working in the hospital – he had a special bathroom built so that he could enter into his house through the bathroom, change his cloths, have a bath and then come in to his family. He did that every time and in that way in his mind protecting his family. I suppose that the fingerplates the institution were from the days of the idea that it was a contact disease, skin to skin?
Yes, that’s right and the fact of the nasal discharge and so on – sure.
So 1979 after it was closed down, people who were diagnosed with leprosy?
They were actually diagnosed and looked after in Fairfield Hospital and if they needed surgery sure they came in and if they needed physiotherapy, but otherwise, they were out in very short periods of time unless they had reactions. Once we were using the multi-drug therapy, we had much less problem with Erythaema Nodosum Leprosum and incredible systemic immune complications which had bugged us until then.
There was a problem about them until Stanley Browne came to see us – the Health Department had a rule – once Thalidomide became available – the Health Department had a rule that you could use Thalidomide as long as the patient had neuritis and patients who had multiple complications who were very, very sick we weren’t allowed to give Thalidomide to because they didn’t have neuritis. These days’ people worry that you are going to get neuritis from Thalidomide but that’s another story.
We had one particular fellow who was on I think about 120 mg Prednisalone a day and every time we got that down – we used to reduce it by about 5 mg per month – and every time we got down not far under 100 the whole thing would flare and we showed it to Stanley Browne and he said ‘He needs Thalidomide.’ And we said ‘We can’t give him Thalidomide because he hasn’t got neuritis’. And he said ‘I concede he does not have neuritis - Just tell the health department from me he needs Thalidomide’. And within two days, we started to reduce his steroids and we got his steroids down to about 5 mg per day and he was fine.
So through Stanley Browne’s visit, he was a world expert, you were able to verify to the department – otherwise you didn’t have any clout with them. That’s right, yes. Dear oh dear.
I’ve been looking at the Archives in Tasmania and I found reference to two, as they refer to them in the text ‘Chinese lepers’ in Hobart during the 1950s and there is correspondence in those files between Dr Bennett and the Minister of Health and the various ones in Tasmania arranging to have one of them brought over and looked after at Fairfield for a period of time because he was suffering from isolation and depression and things and at least he would be with people over here and that was successful and he was transferred back. In the initial times they tried to have him deported and it wouldn’t work, nobody would have him Hong Kong wouldn’t have him and Singapore wouldn’t have him and so they had to deal with it themselves instead of trying to pass the problem off onto somebody else. It was interesting to look at the files and see who wrote to who about what and a lot of it is about who is going to pay for what too.
Did you have people from other states sent to Fairfield while you were there?
We had one from Tasmania, a Vietnamese adopted girl who was sent to us for some months in 1975 and then she went home again. That’s the only one that I can think of that came from elsewhere. I mean we looked after occasional ones that were other state’s responsibility but – if they came on holidays. We had one New Zealand Maori and we had one aborigine who was on walkabout who came to Melbourne and we had very little experience of looking after our indigenous people.
They would be mainly in Queensland and Northern Territory and Western Australia in Derby but not with us.
Were there any Caucasian patients in your time?
Yes, the man that was left in 1979 - he seemed to have contracted his disease in North Africa during WW2 and he was diagnosed at the Repatriation Hospital. He wasn’t diagnosed I think until 1959 when he went to sleep during a fire - and couldn’t feel the pain? and couldn’t lift his feet off the floor. He was taken to Heidelberg and they looked at him in puzzlement for a few days. Somebody came there and asked him a couple of questions because the contact with the place where he presumably picked it up was so remote that people wouldn’t necessarily be taking a history like that.
Of course that’s been a thing that has dogged some other patients too, particularly Caucasian ones. Strangely enough we had one other man - this man who I’ve told you about came from rural Victoria - and strangely enough there was another man from that general area who didn’t seem to have any times of being overseas or – he had gone on treks in central Australia but there was no suggestion that we could find of sexual contact or anything that would have done it. The only thing was this general geographic context. Whether they had met each other in a shop, this man was a green grocer, sold groceries and this bloke had come in and sneezed or what.
So the first man had lepromatous leprosy did he?
Yes, very hideously.
And not diagnosed for years.
That’s right. Mmm.
Well that’s fascinating…
Then we had a couple of – we had one missionary, New Guinea - who had fortunately only a minor form of the disease and he’d been in the era when there was no known therapy working in New Guinea.
Did he live here or did he go back to New Guinea to live?
He was retired and he lived here; he didn’t go back as far as I know. I think I’m right in saying that those would be the only Caucasian people that we had.
The rule was the same for them as for anybody else, they had to be isolated?
They were isolated, yes, although the missionary man had a very minor form of the disease and was only in our care for a very short time – but yes, the others were.
So life must have been different for them in the … when there was only one person that would have been very different but when there were several people…
Yes. There was one distressing time when there were two children in their early teens in together. There were children who were Ceylonese children and the girl became extremely - umm - remote, I s’pose you’d say – withdrawn was she? – and the question was how much of this was adolescence and how much we, by isolating the girl, had contributed. We lost track of those people and they seem to have been cured. We normally, of course, have followed these people for many years afterwards. We didn’t rely on them to come back and see us. We tried to get in touch with them, but we sort of kept our distance from them because we had an idea that the girl had probably got married and if we stirred up trouble and people would have been wanting to know and there would have been a great deal of damage, so occasionally, very occasionally like that we held fire; but normally we kept checking on people, but those were the only - certainly one from Tasmania – that one could call children. There were some adolescents. Many of the new Vietnamese ones were in their late teens or round about 20.
Did you have TB coming through as well as leprosy in some of those people who had come from overseas and with trauma?
Mmm. We had one very famous Indian man who came with a sort of promise. He was coming to Australia and the Australian people weren’t going to carry any sort of responsibility for his medical … and he must, we believe, have provided somebody else’s chest x-ray before he came because not only did he have leprosy, quite significant leprosy, but he also had a tuberculous pleural effusion.
Yes, he had both. I don’t remember anybody else having both diseases.
I’ve been talking to some people who worked in Papua New Guinea at Gemo at Port Moresby, the little island there. Have you been to that place?
No, but I knew a lady who was a great friend of my Mother’s who became a Congregational missionary who was involved there.
What was her name?
Bayton, Jenny Bayton. This would have been in the pre – pre medication days era I think. I remember meeting the Bayton sisters when I was a child but – yes, Jenny worked there.
Can I ask you when you started at the Exotic Diseases Hospital?
I went to Fairfield as a fourth year doctor in 1966. I had known about leprosy and been interested from church contacts, from the Upway Convention and those sort of - and from information which came from people like Bob Edgar and presenting from those fairly ghastly photo shows that were of the pre-treatment era.
I guess I became aware of the Exotic Diseases Unit next door. I arrived at Fairfield in 1966 and by about 1968, Dr Bennett used to take me over when he did his weekly round there. It was partly because of that that I did a Tropical Medicine Diploma in the Public Health Department in Sydney University in 1970 and then after that, I basically looked after them.
Until it closed?
Until Fairfield closed in 1996, that’s right and then most of the patients – the general infectious diseases were supposed to go to the Royal Melbourne Hospital and so the leprosy patients largely – largely did that. There were the very occasional ones that one of my colleagues had been looking after and were able to go there.
But it has always been a very difficult thing to work out whether you want a lot of doctors to know about leprosy – and in the days of Fairfield, every medical student saw leprosy – we were the only hospital in Melbourne that taught both medical schools – so I was able to show all the medical students leprosy. Then of course the question is after we closed, it was good from the Royal Melbourne’s point of view, it was good to have a point of expertise but even that was not ideal because what one found was there was an awful turnover – a tremendous turnover of staff, particularly the paramedical staff, and as soon as you got somebody trained to do particular things, they suddenly were then promoted to some administrative position and ‘No, they were busy’ and could not spare the time to even show their expertise to the people that might have carried on the tradition.
So yes, they mostly went to the Royal Melbourne but I think that now there are a few - there are certainly some at the Alfred, there are one or two at the Austin and I think out at Monash. That’s OK from the point of view of the students and junior doctors that are coming along, but it means it dilutes the experience – there should have I believe been one place that was very expert at it. But it depends also on the people around the infectious diseases team and Grace Warren was very good – and when I say good, she was very acceptable to the plastic surgery people at the Royal Melbourne – they showed her cases and other sorts and so on and she used her expertise there, but from the point of view of orthopaedic surgery for instance, that was harder to crack. There were occasions where even another hospital would do the orthopaedic surgery.
And the Outpatients – how did they accommodate them, did they have a clinic with no name, did they combine them with someone else or … how did they do that?
Well, it was a Thursday morning clinic – it wasn’t labelled – they came to a general outpatient area in Fairfield – ah – with other people and that was largely OK. Indian people felt very embarrassed and tried – and tended to sit around corners and not want to be seen, even though to the non-initiated you wouldn’t have known.
What about after Fairfield closed for that – and how do they accommodate them now in the hospitals?
In the case of the Royal Melbourne I saw them all in that era and that’s what I went to do – that was my, sort of, job at the infectious diseases clinic was to see them all. I think now that’s been um – I think they are seen by different people, but I’m not up to date with …
I met one the other day and he said he was seeing a woman doctor at the Royal Melbourne, but I don’t know exactly how that is all arranged.
So you’ve now moved away from any first-hand contact?
Yes, that’s right – I mean – more or less completely.
It’s a vexed problem isn’t it to know how to keep a medical fraternity up to scratch with something that’s quite rare but important too?
I think whatever – it is a particular – it’s a very complicated disease to look after. Absolutely. So you really do need to have, not only people who are very good at diagnosing the various bits and pieces that can go on but also, of course, to have the team around them to give the best care. And the overall management. One of the things which I am very sad about in Australia is the fact that it has been virtually impossible to get any sort of peer support - Is that right? And some people say ‘Isn’t it nice that leprosy is pretty rare in Australia.’ It is in one sense, but it does mean that the patients fight their battles as lone people particularly in rehabilitation from surgery. The idea of having a group that works together and you can see that he is working hard and p’rhaps you should work hard to achieve what he is achieving – that is – and you’ve asked me about whether there would be people who would be prepared to talk about their story – well they tend to be fairly wary and they tend not want to talk to each other much in the clinics when they are there. We had one lovely Vietnamese man who we – who was really very happy and widely accepted and when he came in to have his treatment reviewed, he could give us really good interpreting for his friend and the unemployment people, sort of, held out to him the fact that they might be able use him as an interpreter but they didn’t ever do this, and he was a highly trained in Vietnam as an engineer and whenever he went for employment they’d say ‘Thank you for these references but your references tell us that you are too highly qualified for any job we could possibly give you’ and so he tended to little or nothing, not because he didn’t want to, but because it was a fairly unenlightened way that this tended to be handled.
So you – from what you are saying do I deduce that leprosy is stigmatised in Australia? That people are frightened of it or wary or …?
I think that would be a subtext. I mean, I would wonder. I don’t think that everybody that goes to Centrelink (Social Security office) gets told that they can’t have any jobs because all the jobs they are qualified for are, sort of, past go – but one has to feel that that might be a subtext of it. But then of course, there were quite a few patients, one would have to acknowledge, who once they had leprosy, they didn’t want to make any great effort and if they could get an Invalid Pension or a Disability Pension later on - we sometimes had great problems saying to people ‘We believe you can do work, it is a matter of finding the right sort’ and to try to get agencies to do it, but they would in certain cases stymie that themselves.
So were they hiding as it were from the community, from society in general? Did they mix much do you know?
Well, some of them did. Some of them did highly stupid jobs like one man we had repaired lawn mowers and he didn’t like to wear gloves while he was …
He damaged his hands did he?
I remember he came in one day asking me to sign a medical certificate, you know, to prolong his benefits and he sort of had both hands wrapped up with, sort of, funny sort of dressings and I said ‘What’s wrong with your hands? And he said ‘Oh I cut that finger’ and I said ‘OK let’s take a look’ and literally both hands were full of pus. Oh! Which of course he couldn’t feel and we said ‘OK you are coming into hospital and you are going to have antibiotics’ and he said ‘I’ve got these lawn mowers at home and I’ve got to get them back to people by Monday’ and we said ‘By Monday you’re going to lose all your fingers, what are we going to do?’ but he went back to that and we couldn’t keep him away. So even though we tried to review these people and tried to help them there were some people who did pretty stupid things.
So it’s a similar story wherever you go, it’s just in a different cultural context that these problems come up.
I think that the people very often saw themselves treated very much more humanely. I’m not talking about that and the time when people were all locked up, but thinking of one Vietnamese man who came to me, he’d been diagnosed before he came – sometimes they were diagnosed in the refugee camps, in the transit camps, before they came to Australia - and he said to me ‘You’re treating me nicely’ So he had been treated un-nicely before? Yes, absolutely, sort of, thought they had been treated like dirt in medical clinics, they had been to, in other places first. I remember one funny story about a health department doctor whose job had been that he was now going to do refugee screening and he rang me up and said ‘I’ve been given this new job and think I should know something about leprosy, can I come and talk to you?’ and I said ‘Well tomorrow morning I’m actually giving a lecture on leprosy to students and then we’ll go and see some cases’ and I said ‘If you’d like to come to that, you are very welcome.’ Ha-ha. So anyway we did the lecture and we went – no, wait on - I think we saw the patients and then we did the lecture and at the lecture he said ‘I noticed that you touched the patients, was that wise?’ Ha-ha. I was probably a bit more on my high horse than I should have been and I, sort of, tried to explain that touching the patients was one of the most important things you did. I used to get very annoyed when I would ask medical students to examine a patient and they would show very clearly that if it was ‘no hands, they were very happy to. They would tell you what they could see, but were worried about what they could feel.
You can’t palpate nerves with your eyes can you?
That’s right, but I was just interested in this throw-back to ‘no touch. Ha-ha.
Well I think you have done us proud and I’m very grateful to you. Thank you very much for talking to us, that’s very good indeed.
Entry made June 8, 2006