Carole Reeves on conflciting surgeons' diagnoses

This is part of Carole's reply to Jane's query about putting up Florence's views on this. Jane had wondered whether this was rivalry between an experimental surgeon (Mr B) prepared to take risks, and a more conservative one (Mr P)who wasn't:

"As far as necessary or unnecessary surgery is concerned, I would have to do the research to determine whether these procedures were considered useful by the orthopaedic or rheumatology profession at the time and also in retrospect. She could have been part of a trial to operate or not operate, hence the selection procedure that she perceived to be biased towards private and non-private patients. But this is only guesswork on my part without seeking out the contemporary papers.

Basically, surgeons want to operate and physicians prefer to use 'conservative' management. Nowadays, it's unlikely that children with juvenile arthritis (I'm assuming this is what Florence had although she mentions rheumatic fever, which is a different thing, and the surgery carried on these patients was on the mitral valve in the heart, which is damaged by the bacteria causing rheumatic fever) would have surgery because the disease burns itself out and the management is always conservative - maybe with sparing use of steroids to reduce inflammation in severe cases. Also, they generally come under the care of rheumatologists (physicians) and not surgeons.

Hip fusion (arthrodesis) was a common procedure at the time for children with hip damage from inflammation or TB (both of which damaged the bone and cartilage of the hip ball and socket) and seemed to offer a means of restoring some degree of mobility and to reduce pain in the days prior to hip replacement. A number of our [Craig-y-Nos] TB children did have this procedure done, one of whom - Peter Wagstaff - went on to have quite severe spinal damage and now walks (with difficulty) with two sticks. So, I think possibly it was a case of therapeutic balance - balancing the long-term side effects of the operation with the effects of immobility and pain from joint damage. There could also have been personal rivalry between Broomhead and Pain (what a god awful name for a surgeon), which might be difficult to uncover without serious research."

Comments on Florence's posting

Florence's memories give lots of food for thought! Is it right that you also went to a special school after hospital - as several of us did – Fred also had this experience, and a friend of his from the hospital days. I didn’t, though I don't know why. Maybe because there wasn't a suitable one near enough to where I lived (Pontefract), or maybe because my parents thought it would be best for me to go straight to mainstream school.

In fact I went to a local primary school – at the beginning wheeled there in a wheel-chair by my mother, then later I walked. That was quite difficult as I was different from the other kids. Not only couldn't run as fast, but I was still wearing a spika at the time, which because it prevented me from bending at the hip meant that if I fell I couldn't pick myself up on my own. Some people would help, others just stood over me and laughed. Probably they were embarrassed too, but it was very humiliating. To this day I’ve always been touchy about people coming to help me if I fall down in public, which has tended to happen from time to time, and more frequently since I had my hip replacement. I know they mean well, but I would ideally like to become completely invisible until I've been able to pick myself up and resume my imitation of being normal!

Often, like you, this makes me angry. And I think I was also a pretty unhappy teenager, too. You do a lot of comparing yourself with other people at that age, don't you, and I also think that because we had to learn to do lots of physical things rather deliberately we might have done more comparing than most. I moved awkwardly, and I hated my image in the mirror. Once the new free forms of dance (jive,cha cha, salsa and so on) came in and you didn't have to do the formal steps of fox-trot and waltz I really began to love dancing, but I was always too inhibited to trust myself and the rhythm of the music. As a wonderful Caribbean dance tune has it 'I feel it in mi waist' - but then my head gets in the way!

I found what you said about your family's reactions to your being in hospital really really interesing. I didn’t realise that sisters and brothers weren’t allowed to visit, though in fact several people mention it in their memories. It must have been very tricky on both sides, for them having to make space for a strange child who was supposed to be their sister, and for you having to find a space in the family.

I was my parents’ only child when I became ill, and they decided not to have any more while I was in hospital. They thought if I came home and found another child, I might assume I’d been replaced with a better model. Good psychology, I think now, though at the time I pestered my mother to have a brother or sister – preferably an older one!! By then I was 8, with my Mum coming up to 40 and probably not keen to start childbearing again. I wonder whether she might even have been quite relieved to be able to put off having another child – they’d had a lot of trouble having me.

There's a lot to say about the differences of opinion between surgeons, so I'll leave that till tomorrow.

Jane replies to Florence

Florence, I've contacted Carole about whether we can put such frank views up on the website, and her view is that of course we can. This is what she says:

"It's perfectly alright to put this up on the blog as it is. We have done the same with our [Craig-y-Nos] participants. It is, after all, Florence's experience and how she feels about it. That is historically acceptable and ethical. One of our ex-patients has written about being sexually abused by a ward sister whom she names and this is on the blog. The ward sister is still alive. One of our community workers - an ex-nurse herself, has attempted to make contact with her but without response so far. She hasn't sued us anyway! I wouldn't anonymise anything on a blog because the function of a blog such as yours and ours is to give a voice to the previously anonymous and to open up dialogue between others with similar experiences."

This is really helpful, and is what I personally think should happen. It also makes clear that none of us feel be inhibited about writing as we feel.

Florence Gill feels she suffered from surgeons' disagreeing diagnoses

Happy New Year! Let's hope it brings many new correspondents to the blog. The Wellcome Trust Foundation brochure Highlights is now out, which might bring in new people.

Here's the first posting of the year. Florence actually wrote towards the end of November, so I apologise for delay in posting her very interesting message. It became part of an interesting correspondence with Carole Reeves, so I decided to save it up and post the whole sequence.Here's part one!

"It’s some time since I last wrote to you about the Marguerite Hepton Hospital. I have written quite a lot in the rough and have been rewriting it to make it more legible. It takes me some time as my hand goes into cramps.

Cynthia says you were particularly interested in how you cope as a lame person and how you feel about one’s appearance. In hospital it didn’t enter my head as we only had mirrors for the head and shoulders. In the outside world you soon begin to know what it feels like to be different. Not school because most of us were in the same boat, but in the street and going out to work. Being made fun of, some copying your walk. People making remarks in your hearing as though we are deaf or unfeeling or a freak.

I didn’t take it lying down, if I could give them a slap I did, and I also developed quite a nasty bitter tongue and used it. I think I was rather an unhappy teenager. One boy used to follow me home and make fun of me. I did cry sometimes, but in a rage. I notice now when I am in a wheelchair people don’t look at you, it’s as if they don’t want to see you. I feel mad and angry even now as there was no need for the operation as I later found out.

When I recovered from the rheumatic fever I was put under Mr Broomhead and Mr Pain. Mr Pain told my parents to take me home to rest but Mr Broomhead had me put on the Thomas frame and sent to Thorpe Arch. He then told my parents if I had this hip fusion then I could go home sooner. No mention was made of the fact that this op would cripple one and cause damage to the lower spine, but he knew it would because when he asked his students what would be the outcome if the op went ahead one student said spinal damage. The doctors discussed this round my bed and I heard it. They think children don’t understand but I did.

I’ve already said we went to the LGI for operations at that time, and Mr Broomhead was ill, so nothing happened for a while, and then they sent me down to theatre and Mr Pain was operating and when he came out to see who was next he came to me and looked at my case notes, threw them down on my trolley and told the nurse I didn’t need an operation and to send me home. I would just like to say when he came out his apron was all bloody.

Much later, Mr Broomhead came back and I went down to theatre again. Two nurses came with the mask they put over my nose and began pouring the ether on and telling me to count to a hundred. I thought if I held my breath it wouldn’t work so I did, but I took the off my nose and threw it across the room. I fought, kicked and struggled but went down fighting until I knew no more.

The ending to this part of the story came with the forming of the NHS. I’ve more or less been having check-ups at the LGI since I was fourteen, and I saw a new specialist and he told me these hip operations were no longer needed and should not have been done in the first place. I was enraged and up to a point still am.

One other thing that makes a different to one on arrival home after five years was how one’s sisters and brothers react to you. When I got taken away I had two sisters and a brother, and one born while I was away. They were never allowed to visit so they didn’t really know me and for many years I felt an outsider apart from my brother; he was only eight on my homecoming but he was very welcoming.

There were quite a few private patients and they never seemed to have operations so I have to think we were guinea-pigs. My close friend Hetty Bryan felt the same way to me. We were in touch occasionally until her death some time ago.

I’m not too sure about this article being put on the computer. What do you think? Have you had anyone saying anything similar?

Season's Greetings

Dear all of you,
This is just to let you know that the blog has not died - I've just been stuck with a string of deadlines. One of them was for a little article about the blog to go in the Wellcome Trust's brochure, which is called Highlights. Carole Reeves, who is the Wellcome Trust's Outreach officer, and has been very helpful to me over the blog, invited me to do it. Apparently the brochure is distributed all over the world, so we hope it will bring in a new flurry of contributions to the blog. Carole has just sent me a copy of the brochure, just out. It's beautifully produced, and there we are on one of the centre pages. I'm hoping that, like last year's brochure, it will soon be possible to see it on the Wellcome Trust website, though it isn't there yet. I'll let you know when it is so you can go and see it.

Have a very happy Christmas holiday break, and I wish you all the very best for 2009, despite the gloomy outlook.

The Christmassy photo is courtesy of Fred!

Harry Dodgson is reminded of plaster beds

It is amazing how the posts bring back deeply buried memories.

Jane's post about the plaster cast making brought this all back to me. For a long time I had a posterior plaster but after my operation I had a full plaster from my shoulders to my hips. I remember the plaster sores which were very painful and had a terrible smell. After a while the plaster was removed in order to treat these sores but as soon they healed I had a new cast.

I recall when I was told I could learn to walk, however I first had to get accustomed to being in a vertical position. I was placed in a frame, made of wood I think, which enable me to be upright without falling over. After a while in this frame I must have been taught to walk although I don't recall that part of it.

After I was discharged and attended school, the headmaster, who knew I had had a long spell in hospital, did not know how to treat me and so came to discuss this with my father who told him to treat me the same as any other pupil.

When the patients were having lessons in hospital they had to write with pencils of course. Pen and ink was not possible. The result was of course that I did not know how to use a pen and ink. We had to use those awful pens with steel nibs and so I always had school books covered in ink blots which always got me into hot water. The headmaster had a short fuse and often threw the wooden blackboard eraser at an offending pupil. He was a good shot however as he never hit anyone.

Geoff Smith comments after spotting the blog & contacting us by email

I started training as an Orthopaedic Nurse at Huddersfield Royal Infirmary, as part of that training you were seconded to MHH, cant remember how long 2 or 4 months. I think only 2 or 3 groups were seconded, and then they were sent to a hospital in Sheffield. At this time (1971) it was not beneficial for nurses from a training point of view.

The staff were very friendly, and a lovely community atmosphere. The hospital had some lovely grounds, but not used. Nothing was locked up and you could go an raid the hospital fridge if you were hungry.

Gerry (Gerald Appleyard) was one of the Charge Nurses and that's how I got to know him.The Matron was called Weddall and her brother worked nights there. He used to make the porridge for breakfast. He had it cooking all through the night. He had a Ford Zephyr car and would go into Boston Spa and get us fish and chips.

Ward 3 was for older boys and Ward 4 younger ones.

Very few Orthopaedic Patients, some babies from Meanwood Hospital who had severe mental disability and stayed in cots all day, they were fed, washed. They had repeated epileptic fits and just awaited the inevitable. Most of their parents never visited.

There was a portacabin on the grass as you went into the grounds, this was

for admin staff.

Edward Green, at MMH 09/56 to 03/57. At aged 14, he was the oldest patient!

I came across your blog re. the above hospital. I was a patient from September 1956 to March 1957. I had an orthopaedic problem with my knee. I have lots of happy memories from my stay.

Aged 9 I took a really hard bang on my knee from a roundabout in a children’s playground. In the following 5 years the knee would repeatedly lock and I was back and forwards to Leeds General Infirmary to see an orthopedic specialist.

He eventually admitted me to MH Hospital for 2 weeks observation in September 1956, so that if it locked he would have a "reliable" witness. I thought "Great, 2 weeks off school”, as my Mam and I drove down the lane leading to the hospital in an Ambulance car. I saw all the kids on the veranda doing school work, and my bubble burst! I was 14 years and 2 months old, the next oldest boy was just 12.

MH. Hospital at that time was a probationary training hospital for nurses having to do a 2 year course then going onto larger hospitals, like Leeds General Infirmarly and Pinderfields [in Wakefield]. They started at age 16 then moved on at age 18.

Up to that time I had rarely come into contact with girls and couldn’t understand why I seemed to get more attention than the other kids. There where about 20 boys on ward 2, as it was known then, and I was the only one not confined to bed. I was amazed to find out some of the kids had been in hospital for years, being treated for TB, Polio and Perthe's disease. I became scared in case I caught one of the diseases until I was assured this could not happen.

I spent most of my time picking things up off the floor that had fallen off the other kids’ beds and passing comics, toys and any other item from bed to bed. On the day the orthopaedic specialist visited I was confined to bed. All our case-notes lay at the base of the bed. I picked mine up and tried to read it but couldn’t understand it, until I turned a page, and written across the full page in large letters were the words "TRUTH DOUBTFUL". I felt my face redden and quickly threw the case-notes back on the bed. I suddenly felt so alone and afraid. When the consultant came to me Sister told him I had been very active and very helpful on the ward - in other words there’s nothing wrong with him!

Two days before I would be discharged I was bouncing on my bed when my knee "locked". Ii screamed for Sister, she and 2 nurses came dashing from the office and witnessed my knee locked with a pea sized piece of cartilage protruding from the side of my knee-cap. The outcome was I had an operation, 12 pieces of shattered cartilage were removed (along with "that" page from my case-notes). I spent the next 6 weeks in a plaster cast, groin to ankle, but was still fully mobile, doing all kinds of jobs helping the nurses hand out and collect bed-pans and bottles. One job I enjoyed was rolling up the dozens of bandages on a small mangle like machine after they had been washed - they where used to strap all the kids’ legs into their frames and splints. Thirteen years ago, aged 53, I had a total knee replacement.

Christmas was a great time, with a doctor dressed as Santa handing out presents to us kids. The Registrar was a Mr. Yeomans, the Physio was Miss Anne Berry. I can only remember one nurse who I had a school-boy crush on, Margaret Brett, and Mary the cleaning lady. I have enjoyed writing about my 6 months in M H Hospital and many other memories have come flooding back. I do hope you have enjoyed my small contribution.

Making plaster beds – a film about how they did it

Since the blog has gone a bit quiet, I though this might be a good time to share my rather curious experience of watching this film, last year before we started the blog. I thought it might interest especially those of us with TB spines, who spent much of our time at MHMH on plaster beds. I've mentioned my memories of this a couple of times (28 April 08, and again on 9 July when I promised to come back to it in more detail). So here it is.

It all started when I went to the internet to check some facts about how spinal TB was treated, including the use of plaster beds. I googled “tuberculosis of the spine”, and came across a reference to a film held at the Wellcome Library in London, called “A demonstration by diagram and illustration of preparing anterior and posterior shells in the treatment of tuberculosis of the spine in children”. So I decided to follow it up.

Because the film is very old, you have to view it with a member of the library staff in a special viewing room. So last July I made my first visit to the library – I’ve been a few times since then, and it’s a fascinating place with lots of interesting medical history documents, objects and pictures. My appointment was with Angela Saward, Wellcome’s curator of moving images, and I went with her to view the film in a special viewing room. She made sure I was comfortable and in a position to take notes, and offered to stop the film if I needed time to write, which I did at a couple of points. In fact, I was rather glad to have her there and that the viewing was set up in this rather academic way – it kept me fairly detached from what I was watching, rather than projecting myself into it more personally, as I might have done had I seen it on my own.

It’s a black and white silent film, quite grainy and faded in places, so the only sound effects were the whirring of the projection, and my own hasty scribblings. It was made in 1936 at Abergate Sanatorium, Manchester, and donated to the Wellcome Library by the British Medical Association Film Archive. Angela thought it might have been a training film to spread best practice at a time when there was no centralized training system.

It shows the making of two plaster beds on a small boy – an “anterior shell”, for him to lie on his front – and a “posterior shell”, for lying on his back. As the film progresses, the different stages of the process are illustrated with diagrams at the bottom of the film. I’ve tried to reproduce some of these to illustrate the stages. My drawing skills are not very sophisticated, but I hope the diagrams will help make the process clear.

The posterior bed they made in the film went up over the child’s head, as though for patients who had upper spinal problems, like some of you who have contributed to the blog. For this, the boy was placed face down on a frame, with a crossbar passing roughly under the stomach, to “ensure a degree of hyperextension of the spine” it said; in other words to keep it stretched and not curving inwards. His legs were bent and the shins and feet were raised by another pair of crossbars, one over the knees and one under the ankles – so that the finished bed would keep his legs slightly bent. (See diagram 1).

Diagram 1: Patient lying face down for making of
"posterior shell"

Next he was rubbed all over with Vaseline, and his head wrapped in a cloth. Then they laid strips of bandage-cloth impregnated with wet Plaster of Paris on the child’s body in a carefully designed pattern, slightly overlapping and patted down till they all melded into a single piece (see Diagram 2 below).

Diagram 2: Patient lying face down for making of "posterior shell". The numbers show the order in which the strips were placed, and the arrows the direction of the strips


In the film, the first strip went from the bottom of the child’s torso (leaving the behind clear) right up the centre of the back and over the head, and was carefully tucked in to follow the curve of the neck (1). Next came side slabs (2). Then a curved slab was placed round each shoulder just touching onto the central one (3), and another went across all three (sorry, I omitted this from the diagram, and I don’t want to re-scan it). For the legs, a single strip was placed along the back of each leg, from the groin right down to the ankle (4). Then bandages soaked in plaster of Paris were rolled back and forth crossways to this slab, moving from thigh to ankle and creating a curved shell (5). As the different sections were applied, they were smoothed and slathered down very firmly until they form a continuous whole, with seam-lines down them which looked like those on a certain design of dress, or the taped joins of the ‘liberty bodices’ I remember wearing later on.

Finally, presumably when the plaster had dried enough to keep its shape, you saw the whole shell being removed, and placed on a wooden frame. The final frames show the child lying on his back in the plaster bed on the frame.

The process for the anterior bed – made on the front of the body for lying in face down – was pretty similar, except that the child’s legs were straight, and there weren’t any crossbars to maintain the correct position of the spine. In this one, the leg slabs went to just above the knee, with no further bandaging to and fro.

As to how it all relates to what I remember, this is quite a difficult question. Angela asked me if we had been as compliant as this child, who kept so still I thought they must have used a doll – which Angela doubted – or that he was anaesthetized. Both processes, but particularly the one for the ‘posterior bed’, looked extremely uncomfortable, so perhaps anaesthetization was used. Yet I don’t remember any such discomfort, and I was certainly conscious throughout. What I do remember vividly was the feel of the plaster slabs, warm, wet, sticky and smelly, and the slapping and smoothing involved in their application. I imagine the Vaseline-ing must have been a strange sensation, too, though I don’t remember that either. I wonder how they cleaned it off us afterwards – we must have had to have some sort of bed bath, I suppose.

I mentioned this film to Cynthia Coultas when we had a long talk on the phone not long ago. It seems that by the time Cynthia was involved in this process at Thorpe Arch, they used single sheets, rather than strips, laying them over the whole back, or front. Apparently, each patient had an anterior and a posterior bed made, because we had to be turned frequently to prevent bed sores. Funnily enough, I have no memory of being turned, yet from what Cynthia says it must have been quite a frequent process.

So watching the film jogged my memory, but also left me with a whole series of questions. For instance, I wonder what happened to our muscles over so many years of lying flat, and what kind of preparatory physiotherapy we were given before the magic moment when we actually stood up to walk. Without any at all our legs would surely have crumpled under us!

I wonder, too, why I didn’t ask more questions about this all once I’d come out. I suppose at that age children take an awful lot for granted, and don’t question something which, though it appears peculiar with hindsight, was our ‘normality’. Then, coming home, it must have all faded into the background as I moved forward into a new ‘normal life’. I did tend to explain my inability to perform certain physical activities in terms of my having been in hospital – for instance, I always found it very difficult to sit on the ground cross-legged, but really without analysing it too much at all.

Does any of this jog memories for anyone else? Does it contradict your memories, or help fill them in? Or does it jog other memories altogether? Perhaps Cynthia will have a look at this, too, and fill in details from the nursing point of view. Please comment and add details, questions, differences of view, and so on.

Cynthia Coultas gives a nurse’s perspective on visiting limitations, and other aspects of nursing children in the

Rowland’s memories certainly back up the importance of parental input and the reason for modern day thinking and the changes to the care of children in hospital. Hence the development of programmes such as those at Great Ormond Street and others.
Like all the other things involved with caring for the sick, visiting is a multifaceted problem. There were unexpected problems when unlimited visiting was instituted, which it took time to sort out. By the time this happened I had moved on to the general hospital, but the principles are the same. On the first day we were all prepared for welcoming extra people to occupy the patients. Brilliant, we would have more time to get on with individual treatments.

As the doors opened, a flood of people surged forward to the bedsides of their loved ones. With them arrived shopping bags, wheelers and arms full of gifts. By 10 am. coffees and teas were being drunk from flasks, and by lunch time sandwiches were being enjoyed by patients and visitors alike regardless of diets! A dangerous situation for diabetics, etc. and nurses had no idea whether patients were eating or just hiding problems behind the aura of fruitfulness provided by their families. This trend continued until the last buses were due to depart and those with cars dawdled even longer.

After a few weeks of this type of scenario, patients, staff and visitors were all complaining of fatigue. Patients were exhausted and suffering from constipation and other associated digestive upsets, staff were unable to perform personal care without embarrassing the patients as they explained what they wanted the patients to do to cooperate, and visitors were finding financial implications on a long term basis.

Also needing addressing was where all these people were to sit. Inevitably the beds seemed the obvious place. Plenty of room for two or three. As bed clothes were pulled tight, wounds groaned under the pressure and wound healing was being delayed. Added to all this of course was the added risk of infections carried in unknowingly by the visitors. I will mention MRSA and then say no more.

Again my point is that there is no easy answer to any one problem and sometimes the tug on the heart strings is the lesser of many evils.
In general, I suppose we can’t overlook what things were like at the time. 1950 was a very early post- war situation, and it is always difficult to put oneself in the mind set of an earlier period and what was happening generally to children. Money was short for everyone so food as well as clothing and everything else had to be completly eaten or worn out before it was thrown away or even still passed down to 'little Johnny'. I remember my father saying that if I didn't eat what was before me it would be returned at the next meal. That was no idle threat! 'Make do and mend', was the quote of the day for making clothing last longer, etc.

Drugs then were very minimal and basic (no broad spectrum antibiotics for example) hence lots of fresh air and rest! TB itself was also something that doctors were learning about, and without the appropriate drugs to help in the treatment they were fighting a very difficult battle.

The point Fred made about the staff being young and inexperienced is also valid. Again this doesn't or shouldn't happen today because the training separates the nurses from the wards until they have gained some knowledge. On the other side of the coin nursing is a very practical work and full knowledge can only be gained at the bedside in order that the intangible can become intuitive. We were taught about diseases and what to look for in a patient who were unwell.

Today nurses are taught about health and have some idea if a patient admitted for a cataract operation is at the time of admission developing a further problem. Not to take over the Dr's position but to know when to call for his attention.

...and Jane responds again

This added bit about your later visit to the hospital is also very interesting - it always struck me as curious that such a little place as Thorpe Arch incorporated a children's hospital, a munitions factory, then a prison and the British Library (which I think is still there). I wonder how much of that was due to re-using buildings that already exist.

I was surprised to hear that you had to be quite so assertive about staying with your son when he had his operation - I thought by then it was almost commonplace for parents to be allowed to be with their children, but obviously it all took longer than I thought, or at least did so in some places. I've read quite a lot of stuff on how Great Ormond Street hospital led the change, but of course that was up 'at the sharp end' of medical practice.

I would have liked to be able to 'walk the place' as an adult, as you did, not only lay ghosts – more to conjure up a few, especially as I have such vague memories of the actual physical aspect of the hospital. So I was sorry it wasn't there any more when we finally got around to going (in about 2005, I think). At the same time, I can understand your feelings about obliterating it. A similar hospital at Craig-y-Nos (I've mentioned their blogspot a number of times, since it inspired ours) was housed in a castle, which is now a luxury hotel, and rumoured to have at least one ghost of a child. Presumably new-build houses won’t have any at all.

Rowland replies – with his experience of the hospital as a patient’s parent in the late 1960s

It may be of interest to know that between Sept 1969 and January 1973 I served as a young prison officer at the Thorpe Arch prison directly opposite MHH. My middle son David who was born in Malta in 1968 with Telepes (club Foot) was actually operated on at MHH to correct the deformity. The Paediatric surgeon that carried out the operation, Professor Silk, an American on secondment to Leeds Infirmary, opened up the MHH obsolete operating theatre solely for that one operation.

I have to say at that time it was a totally different hospital from what I remembered but even so the visiting arrangements were by today's standards still harsh and unfeeling towards both the patient and the parents. After my experiences of MHH both my wife and myself made it quite clear that one of us would be staying with our child throughout and one of us did for almost a week until he was finally discharged.

My return to MHH was with mixed feelings hoping to make some sense of what happened to me there. Of course in 1973 it had changed considerably from what I remembered in 1950 and to be perfectly truthful it didn't hold the terrors that I thought it might. I was allowed to wander the grounds and hospital and as I did so I laid to rest some of the fears that I had. Personally speaking I am glad that the hospital was eventually pulled down and some better use made of the grounds. That may sound ungrateful especially of all the good things that came out of MHH and of the hundreds of children myself and my son included that benefited so greatly from its existence but I don't mean it to. It's just the way I feel.

Jane responds to Rowland and Fred

Thanks for sharing these memories - it must have been quite difficult getting them down on paper in order, and you're the first one to have done it so frankly! Like Fred, I find they remind me of some negative memories, too, especially of being left at the hospital by my parents. I'd been transferred from a hospital in Wales, and had spent about a month at home, encased in a plaster cast. I remember lying on a sofa in the front room downstairs. Looking back, I can't imagine how my mother coped; she told me that in the first days when I got home, I regressed to a sort of baby-ish state when I wouldn't let her out of my sight for fear she'd disappear, I suppose. She even had to negotiate to go to the loo. So I felt desperately homesick when I got to Thorpe Arch, and I remember being told off because I wouldn't stop crying.

I don't get the nightmares you write about, but I was a very fearful child for quite a long time. do remember a lot of harsh treatment from some of the nurses. I still remember how one night a nurse took away the rag doll I slept with to punish me for being naughty - don't remember what I'd done - and gave it to the girl in the next bed. This doll was made for me by my Granny, and I think it was like a safety blanket to a smaller child. I cried and cried till in the end this girl got fed up and gave it back to me for a bit of peace. The nurse came to see whether I'd fallen asleep crying, I suppose, saw me with the doll, and took it away again... That kind of thing seemed like pure malice to me.

However, Fred had these second thoughts after responding to your email, which fit well with what I want to say here: "Maybe it's too easy to judge the MHH nurses by today's standards. Some of their actions would probably have been considered far less shocking fifty years ago, and were probably based on their own childhood experiences. Fred remembers his parents threatening to serve up uneaten food at the next meal time. My own parents' reaction to my pickiness was to take the plate away from me when they'd finished eating: "Oh!, so you don't want any more", till I got so hungry I ate pretty well everything that was put in front of me, with a few exceptions, like slimy mushrooms and tapioca (as I think I've said before). As their contributions to the blog show, many of the nurses were trainees and probably only in their teens with little knowledge of how to deal with awkward, stressed children in an alien environment.

I think the once a fortnight limit on visiting was the rule, actually - as you'll see from the other messages. What really used to bug us, though, was that the visit day would sometimes be postponed a week if it coincided with some apparently arbitrary date, like the 1st Saturday of the month. Then we had to wait three weeks.

I've done a bit of research into the way the rules on visiting changed, as child psychologists became aware of the damage early, sudden separation from parents could do to children. In 1956, under the Labour government of the time, the Ministry of Health set up a committee which took evidence from a huge range of people - doctors and nurses, of course, but also parents of children like us and child psychiatrists. They issued a report in 1959, called the Platt report, discussing the whole thing, and recommending more frequent visiting - though they recommended that it should be carefully managed in long-stay hospitals, where it was also important to create some semblance of a normal life for children, including school and independent play time.

Some of the evidence they considered came from letters in reaction to a series of BBC programmes. Only the scripts are left, and I've been able to see some of them in the BBC's Written Archives. They were broadcast by Woman's Hour, and some were outside broadcasts to village halls, to conduct a sort of panel discussion with local people, a bit like Any Questions nowadays, I suppose. Many ordinary people, but especially doctors and nursing sisters, were against more visiting, which they thought would disturb the ward routine and upset the children when the parents left. But the research showed that children settled better if they saw their parents more - couldn't we just have told them that!

After that, they began to bring in new policies and nowadays, of course, we have daily visiting and parents allowed to stay with their kids. I'm sure these would have created other problems for our parents - my home was in Pontefract, so the journey for my Mum was a long one, too, as she had no car, though I remember kind friends giving her lifts in their cars.

Fred responds to Rowland Jagger's account.

Rowland was a patient during the time I spent at MHH, 1950 to 1952 and we are of the same age. He has awakened in me memories that I had long since forgotten or perhaps I had managed to shut them out where he has struggled. I found reading his account to be both heartrending and disturbing. I don't believe my life was scarred by the experience but it has had a lasting impact on me. I find it easy to withdraw into myself and am content with my own company. I am almost compulsively independent and find it extremely difficult to ask others for assistance, I need to be in control. Oddly enough I feel very comfortable being this way, confident that whatever life throws at me I can deal with and there have been challenges to face as is the case for everyone. I believe this resilience stems from the time at MHH.

Hospital antiseptic I remember as ether, but I've always liked the smell, can't say the same for the boiled cabbage but I don't mind the smell of methylated spirits even now. I cannot remember protesting too much against being strapped down in my frame but I do remember, when I first arrived, hoping that they weren't going to strap me down in one of those things.

Yes I have memories of unkindness, sometimes being subjected to mental cruelty but in my case it had the effect of hardening me up, if I kept my head down and didn't make a fuss, withdrawal I suppose, I could get by without becoming the centre of some nurses anger.

Looking back I remember the good times more readily than the bad, maybe my "conditioning" was more effective than Rowland's e.g. I cannot leave food on a plate and will eat most of what is in front of me even if I don't like the taste and maybe I began to believe I was "too big to cry". I suspect Rowland's will was probably more resistant than mine and he remembers the struggle more because of it.

I wonder how Rowland feels about the medical profession today, I have had to return to hospital for major surgery on a couple of occasions, admittedly they don't keep you in quite so long these days, but I had few fears of the surgery and only warm memories of the way I was treated by all the medical staff attending me. Even today I attend outpatient clinics and almost look forward to them, certainly without any trepidation.

Finally I wonder if Rowland had the same disorder I had, Perthes disease. It is a condition affecting the hip joint and my treatment was exactly as described by him down to regular x-rays and hip manipulation. I was completely cured, physically anyway, by my hospital stay. Length of stay was dependent upon how far the joint had worn before diagnosis and how quickly the hip ball joint recovered, in his case considerably quicker than mine. I am not entirely sure complete mobility would have been restored with TB and await someone more knowledgeable to correct me.

Rowland Jagger (a patient in 1950, now living in Spain) raises some issues about the effects of visiting restrictions

I was a patient at Marguerite Hepton Hospital in 1950 at the age of seven years for a period of about 12 months for what my parents were told was a TB hip.

I have been trying to put my thoughts down on paper without sounding too negative. In all honesty I do not feel that that part of my life holds any fond memories for me at all. It was a time of my life that I would prefer to be able to shut out from my memory but I cannot. Now at the age of 64years I can at least look back objectively without feeling aggrieved and troubled.

I remember it as being the unhappiest time of my young life and I am convinced that my life was scarred forever as a direct result of that experience. I remember being very frightened and I cried a lot. I couldn’t understand what was happening. I didn’t even have time to say goodbye to my sisters or grandparents and as my parents weren’t allowed to travel with me in the ambulance I believed for a long time that I had done something wrong and was being punished.

MHH was a small cottage hospital but in reality to a small frightened little boy it didn’t look like one to me. It was alien and scary with the huge hospital grounds set inside dark thickly wooded areas. So far away from my home in Leeds I felt as if I would never be let out or see my home again. Once inside children were not allowed out. Average length of stay could be anything from 6 months to years.

On arrival I remember having all my clothes taken off me including a few small toy lead soldiers that I always carried around with me. (I remember being told not to be a silly boy and to stop crying as I was too big to have toy soldiers at my age).
Forty miles is no great distance to day with almost every body having a car, but in the 1950s my parents, ordinary working class people struggling to bring up three children didn’t have a car. The public transport in those days was poor if non-existent out in the rural areas. The infrequent journey’s they tried to make every fortnight to see me was a long drawn out affair and must have been a serious drain on their tight budget.
I remember clearly the first time I was taken on to the ward; the beds with metal cages and some with strange looking gadgets above which I later learned were pulleys with which to raise the limbs. The noise of children shouting and crying, pulling on the metal bedstead’s jerking their frames up and down to make a banging noise was alien and I was petrified.

This was something I learned to do my self in later weeks when I wanted attention and was frustrated and bored which was often It was if I had arrived in bedlam. The smell was a sickening mixture of hospital antiseptic, boiled cabbage and methylated spirits. The latter I would find out to my horror was used as a treatment for bed sores which I would suffer greatly from. I remember carrying on alarmingly when they first strapped me down on a metal frame all the time being shouted at and told that it was for my own good and not be a silly child. For days I cried myself to sleep pleading for my mother, wondering what it was that I had done so terrible to be sent there. For years afterwards when I was well into my teens, I would frequently have the same recurring nightmare that I remember having that first night. It would always be the same. I can’t breath, I can’t move. My head feels as if it’s going to burst. I’m trapped inside my body and I’m being crushed.

I remember stubbornly refusing to eat any of the food. All I wanted was Mother. The nurses would sometimes get cross and shout at me not to be a silly child and hold my nose whilst forcing food into my mouth. Sometimes, I would gag and be sick on purpose. I soon learned not to do that as any uneaten hospital food was put in front of me for the next meal.

The occasional stinging slap from an overwrought nurse and the threat of having a large tube that they waved in front of me pushed down my throat eventually made me conform. Strangely enough even today I am what my wife calls a very fussy eater.

As far as I can recall there were about twenty other children in total in the ward. Not all were on bed frames. Some were allowed to walk around with callipers on their legs. I was so envious of them.

Some of the nurses I remember as a child were not very nice or understanding, but there were some nice ones and one in particular. She would often sit next to my bed at night time and hold my hand telling me everything was going to be all right. She had lovely red hair I recall and she was very pretty, and smelled just like my mum.

Being strapped to a metal frame, I had to learn quickly to hold my bodily functions often crying in pain. On the occasions when I couldn’t wait and had an accident. I would lay in fear waiting to be found out. The punishment was always the same and even to a seven-year-old was humiliating. The bedclothes would be yanked off the bed, an angry nurse telling everybody watching that you were a dirty boy. A favourite punishment was to have my penis pulled with one hand whilst in the other, the nurse held her scissors over me threatening to cut my jimmy off if I wet the bed one more time.

The boy in the next bed to me was called Lorry I think it was short for Lawrence. I’ll never forget his name. He was older than I was and would throw things at me when I cried. He had a shock of white hair. I recall thinking how funny he looked because he had a bald patch at the back of his head with the constant rubbing of his head on the pillow. I remember thinking as a child how naughty he was. He was always being smacked for messing the bed.
He learned his cunning the hard way and when he had an accident he would throw his stools under someone else’s bed space, invariably mine. Despite that, I remember feeling sorry for him. He was always crying, but I didn’t know why. He used to scream at night times complaining that his legs hurt. When the nurses came to him he cried even more and struggled with them as they rubbed methylated spirits onto his bedsores.

Within a few weeks of being there I myself learned from first hand experience the stinging pain bed of sores, and the skin chaffing that the restraining straps caused on young tender skin. After the first experience of having mentholated spirits rubbed into my bedsores. I tried very hard not to complain but the nurses checked every week and the treatment was always the same.

Bed times were always the worst for me. I recall always crying when I thought of my mum, I missed her so much. Every day seemed like an eternity and even though I’m sure there must have been moments when I wasn’t unhappy, in all honesty I can’t recall them.

I remember vividly the first time my mum and dad visited me at the hospital. Mother now says that it was only two weeks after I had been admitted but I don’t know. To a child it seemed like years. I remember screaming the place down as they left. Mum says now that they could only visit every fortnight, but other children’s mums and dads seemed to visit more frequently than mine. Not that I feel bitter about that now as an adult. They did what they could at the time I’m sure.

We had schooling every morning, not that I was in any frame of mind to learn and as a direct result when I was eventually discharged and went back to school I was hopelessly left behind. Fortunately, I was able to make up some lost time, but I always remember my later schooling days as difficult and demanding.

Days turned into weeks, weeks into months. Lying on a frame on your back strapped down unable to move anything but your head and arms when you don’t feel unwell was a torture devised in hell. To see other people walking around albeit on callipers was to me so unfair. I would struggle and strain against the straps but only until the pain became unbearable then I would just lay there sobbing. I remember after many months been taken for several x-ray’s and seeing several doctors at MHH who tried to make me do all kinds of exercises with my legs, but they wouldn’t do what I wanted them to. I had in my mind a plan that when they eventually did take me off the frame that I would run away.Strange as it may seem, psychologically I must have became used to the life in the hospital because the periods of crying and wanting to go home no longer plagued me.

A couple of weeks before I was discharged I remember being taken off the frame every day for physiotherapy. I still couldn’t move my legs the muscles had wasted so much. I recall screaming in pain as my legs were being manipulated. Thirteen months almost to the date that I had been admitted I was fitted with callipers and discharged. I couldn’t walk with out them. My legs unable to support the weight of my body. The were muscles weak and ineffective through twelve months of inactivity were useless. Nearly six months later after hours of out patient treatment I could walk again unaided.

I ask my Mother today what exactly was wrong with me? What symptoms did I have? What treatment was it I was subjected to? Didn’t you ever feel the need to question what was happening to your seven year old son? The answer is not all that surprising as a strict authoritative demeanor ruled throughout, for this was the approach of the time in the fifties. No one especially parents questioned doctors, complained, or challenged the circumstances at the time. This meant that many children myself included suffered the indignity and damage being in institiutions where parent’s visits were strictly controlled and were they was not involved in any treatment programs.

Please don’t get me wrong, I am pleased that whatever it was that I was suffering from was diagnosed and treated in time. I believe that I was one of the luckier ones. I went on to be able to participate in all kinds of sport successfully. I spent 6 rewarding years in HM Forces and then followed a successful professional career for the next thirty years before being able to retire early. But, I did suffer and still do psychologically. The impact of being removed from my family, seemingly forever, without really understanding why, of living apart in a building labeled a "Children's Hospital", of having significant life altering medical and surgical procedures done without real understanding, and involvement in the "real" world cannot ever be truly measured.

I'm now 64, and live permanently abroad in a beautiful part of Spain known locally as Xabia or better known as Javea approx 70 kilometres north of Alicante. I have lived here now for 11 years with my wife Kathleen spending my time gardening, doing D.I.Y. and writing which is my ultimate and untiring passion. We also spend a lot of our time travelling around this beautiful country which we both love trying to absorb as much of its history and culture that we can.

John Appleyard (c1939-1945) remembers air raids and gas masks

On the BBC’s WW2 People’s War site there is a 2005 posting by a John Appleyard, aged 68 at the time of posting. The site content is copyright, but it's legitimate to give a link to it here. John Appleyard (who adopts the site name ‘jontyjon’) was a TB spine patient at Thorpe Arch for six years, leaving in 1945. His posting gives a vivid account of air raids on the munitions factory – which he found thrilling – and of the gas masks in the shape of Disney characters issued to the children. He became so attached to his Mickey Mouse mask that he cried when he had to leave it behind to go home! The full posting is worth reading, by clicking on this link: http://www.bbc.co.uk/ww2peopleswar/stories/74/a5499174.shtml. The whole site is fascinating.

I came upon the posting some years ago, and tried to follow him up, but unfortunately he left no contact details. Do any of you know him, perhaps? You can read his account by clicking on the link.

Jane responds to Andrea about toys falling off the bed

I remember the problem of things falling off the bed very well. I was noticing just the other day that I seem to have very quick reflexes for catching things that threaten to roll or fall off somewhere near me. With all this work on the blog, I'm beginning to wonder if I might have developed these at Thorpe Arch. As you say, if something fell off your bed there, unless you could get a walking patient to pick it up for you it might as well have fallen into a bottomless pit, lost for ever. In the end I just got a bit lackadaisical about losing things, which used to drive my mother mad when I got home!

It comes up, too, in Margaret Vicars's posting (8th July) about her efforts to pick things up for other children, once she could walk - even though she couldn't walk very well!

Andrea Kerr (nee Higgins) was a patient 1958-9, and worked at Thorpe Arch as a chef when it became an old people's home

Andrea rang me after my article appeared in the YEP. This is based on the notes I made during our talk, with some additions Andrea made when I sent her the notes.

"My auntie told me about your article in the YEP and encouraged me to get in touch.

I was a patient at the Marguerite Hepton Hospital from the age of 7 for 10 months, 1958-59, with osteomyelitis of the hip. I had an operation for it at Leeds Infirmary – I was in Ward 10. The situation was so bad they told my parents it might be amputation or death, unless they tried a new technique. My father said ‘Try anything’. I survived the operation, but they told me I’d probably end up with a built up shoe and callipers. Then they sent me to Thorpe Arch, where I was on a frame in traction for months. When I left, I had no built up shoe or calliper. All this because my school teacher made me put a dirty handkerchief which had been found in the playground over a cut on my knee – a lesson I’ll never forget, for I’ve had to live with the results ever since.

I had to have lots of painful injections of streptomycin. The liquid was very thick and the needles really big, and I was sore from having so many injections, so they’d stuff a hanky in my mouth to stop me screaming with the pain. By the time I left I was like a colander!

I remember we had classes, which were neither here nor there – the same teacher used to deal with all the girls on the ward, aged from 6 to 16. So when I got back to school I was well behind. In those days, they didn’t have the sort of teachers they have now to help you to catch up. All I remember from those classes was that the Swiss flag was the reverse of the Red Cross flag! I wonder whether we had church services – does anyone remember? There was a TV on the ward – a small screen up on an end wall that I couldn’t see.

One thing I wished was that I could find a way to stop toys falling off my bed. Staff wouldn’t pick them up but just threw them away. I remember I had a new doll for Christmas and I dropped her jacket and never got it back again – same thing with jigsaw pieces, all kinds of stuff. There was a cleaner who came most days. She was a lovely lady who was deaf. I used to write her notes to ask her to look for my toys.

I’m also left with a fear of spiders, because one day there was one in my bedpan, and when I screamed about it the nurse tipped it into my bed.

We used to get visited maybe once a week, and at weekends; no visitors were allowed on ward cleaning days. My Gran came often, even though it meant taking three different buses. There was also a railway station about 300 yards down the road, now closed down. One time there were delays to the buses, and my Gran only got to the ward around 7 o’clock, and visiting ended around 8 so she was fairly desperate. My Dad also came, but my Mum needed to stay at home with my Downs syndrome sister. I never really felt close to my Mum when I got home again.

We never set eyes on the boys, though I do remember one night when they searched under our beds because a boy had absconded from the children’s home next door – but he wasn’t there!

Digging down I can remember quite a few things: a sister washing our toe nails ready for the doctors to see; and a cook who was sacked for serving ‘food unfit for human consumption’. One thing she cooked was a sort of pudding made out of minced up vegetables, baked in a tray. I remember my very first meal on the ward: sausage, baked beans and mashed potatoes with gravy. I specially enjoyed breakfast – bacon sandwich was my favourite.

I remember Christmas there. The doctors and nurses used to come round the wards singing carols. My uncle worked for the Thrift stores, and his boss used to supply toys for the Christmas party. One Christmas Eve, one of the nurses got drunk, fell down some stairs and broke her arm. When she came back on duty, she was wearing a pot and a sling, and she’d go past our lockers filling her sling with any sweets we had on show.

I also remember Bonfire Night – we were all wheeled outside through the French doors to watch the fireworks. And once there was a visit from Coco the Clown, who gave us all signed photos of himself.

There was a sort of aviary and one night someone pulled the bars apart and the birds flew away. I was a walking patient by then, it was not long before I left, and I got blamed for doing it, but it wasn’t me.

I don’t remember the names of many people, except one girl called Mary Higgins, who was in the bed opposite mine – because my name was Higgins I suppose.

When I left hospital, there were things I wasn’t allowed to do. I was never allowed to take part in PE or games, in case it would cause another injury. I always wanted to join the police force, but I was excluded as medically unfit. Still, I always managed to earn a living – as a chef. They even suggested I shouldn’t have kids, but I’ve had four. I think we’re survivors, really. I think there are some people who just are survivors, and others who just sit back and wait for people to do things for them. For instance, since I had my stroke, I’ve got back to doing a lot of things.

About 17 years ago, when the hospital had become an old people’s home, I went back to work there as a chef. It went up and down a bit – sometimes it had a blue badge, sometimes it didn’t, depending on how the inspections went. One of the people who had nursed me when I was a child was working there again. I think she may live in Wetherby now, though I don’t remember her name. But I do remember she brought in some photos of how the hospital was, showing how the beds were. They looked quite ramshackle, as if those gates they had to stop you falling out of bed were made of orange boxes.

At the time I was working there, Leeds United used to use the playing field from the children’s home as a training ground, and I think before then it may have been used by the police.

Florence Gill (nee Gould) remembers three matrons (1936-1940) and a pet donkey

I spent four years there from 1936 to 1940, having gone there from St. James’s where I spent the best part of a year. I had rheumatism in various forms from the age of two, going on to an attack of acute rheumatic fever. I was six when I went to St. James’s and eleven when I came home.

My memories of Thorpe Arch are still very vivid and I remember many names of the patients and staff, who were kind and who was not, the teachers’ names, the specialists and the three matrons who were there in my time. When I first went there the hospital was for convalescents only. The address was just The Marguerite Home, Thorpe Arch, Yorks. Later this was changed to the one you know.

Later, the place was for adult women who needed longer hospitalisation. I visited an aunt there who had a broken leg, she was there about three months, but I rather enjoyed the trip. There were some changes but the main buildings I knew were still there. We went for a trip around there some years ago and I just couldn’t find it, but I mentioned it to someone who turned out to be a doctor and he said the place was still there but for what purpose I don’t quite know. Some of the patients were there for TB, but some were like me; some with rickets, but a good many had been left crippled by polio.

The matron who was there when I arrived was called Watson. She died there in odd circumstances believed to be suicide. Her Alsatian dog jumped out of her window and fell through a glass roof below which was the baby ward but fortunately missed the children’s cots. We then had Matron Balmer who was a lovely person, but didn’t last long as she got married. Matron Downs came next and she was still there when I left.

There were frequent visits by the committee who ran the hospital, all the country gentry. Mrs Lane Fox came quite regularly. She lived at Bramham Hall with her daughter Felicity who was in a wheelchair.

We had teaching all the time I was there, with a Miss Whitehead. The gardener was Mr Whitehead, no relation. He seemed to do everything besides gardening. He looked after the resident donkey called Hopey, who was kept in a meadow. Sometimes he got used to the music and came near the wards to listen to it.

Sometimes the nurse would play the piano and we would have a sing-song but we also had a radio. Now and again Hopey would get out and always ran to the kitchens and poor Mr Whitehead had to chase after him. As I was leaving he was digging up the tennis court, part of the war effort, I suppose.

Margaret Vicars has her discharge signed by Miss Lane Fox

This is Margaret Vicars letter of discharge signed by Miss Felicity Lane Fox. There are no wasted words in her letter, despite Margaret being a patient for almost four years, but then there was a war on.

Note the date signed, 1st September 1944, during war time. There is no doubt in the author's mind that the letter will reach Margaret's parents in time for them to collect their daughter the following day, a Saturday. If only we had such confidence in our postal service today, particularly when there was no first and second class systems then.

Miss Felicity Lane Fox went on to become Baroness Lane Fox, who's story is told, in part, below.

Taken from The Yorkshire Evening Post of April 18th 1988.

Battling Baroness Lane Fox, a champion of the disabled despite being wheelchair-bound herself, has died.

The brave Yorkshire Tory peer, 69 the daughter of Mr Edward Lane Fox and his wife Enid. She was struck down with polio when on a family holiday at Filey.

The medical experts did not hold out much hope for the little girls survival,but they reckoned without the tremendous strength of purpose which in later life made her a tower of strength in helping the disabled.

She raised many thousands of pounds through broadcasts and interviews and was a familiar figure being driven around the country by her mother in a converted double-deck van.

Her first voluntary job was as an appeals organiser to the Yorkshire Association for the Care of Cripples in 1939.

During the war years she was secretary of the Thorp Arch Children's Orthopaedic Hospital and away from her work was a lover of sport and was joint secretary to the Bramham Moor Hunt.

She was an active political worker and keen supporter of the Conservative Party and her life peerage was personally recommended by Mrs Thatcher, who was one of her many admirers.