Attending St Mark’s Hospital in the 1930s: Examining and preserving the case notes

The St Mark’s Hospital Archive contains an extensive record of the patients who passed through the hospital’s doors from 1900 onwards. An array of patient registers, such as admission and discharge, ward, private patient, out-patient, radium, anaesthetics, daily beds and operating theatre, covering 1900-1994, are complemented by Clinical Staff Meeting records where individual cases were discussed, covering 1949 to the early 1980s.

More detailed records of diagnosis, treatment and outcomes of in and out-patients are recorded in surviving case notes from 1908 to the end of the 1930s. Series SBHK/MR/20,  covering 1908-1930, comprises hefty bound volumes of case notes arranged by surgeon, including F. S. Edwards, F. C. Wallis, J. P. Lockhart-Mummery, H. Graeme Anderson, Lionel E. C. Norbury, E. T. C. Milligan and W. B. Gabriel. Each volume now sits inside a custom-made archival box as part of the conservation aspect of the St Mark’s Hospital Archive Project.

Prior to the project the follow-on series of unbound notes covering the 1930s (although catalogued with the preceding reference SBHK/MR/19) remained exposed on the shelves and without a detailed catalogue entry. One of the goals of the project has been to preserve and re-package this set of case notes, describe them at series level and make them produceable to medical historians and researchers.

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The packaged and re-housed case notes series SBHK/MR/19 in archival storage. The case notes are numbered 1-15799, one number per individual. There are a total of 207 boxes.

 

This article will focus on the 1930s case notes, their scope, how they have been archivally rehoused and their research value. The final section discusses retention and access to personal medical records.

Scope and content of the case notes

Series SBHK/MR/19 case notes record patients mainly seen and treated at St Mark’s Hospital as in-patients and/or out-patients in the 1930s. Although the main coverage is the 1930s, some case notes include case sheets recording patients seen as far back as 1920 (these sheets are in a different format and are normally imprinted with the name of the surgeon at the top, e.g. Mr W. B. Gabriel) and a number of case files contain a record of subsequent treatment or hospitalisation or follow-up contact from either the patient or the hospital into the late 1970s.

The standard form case sheet bi-folio is entitled ‘St Mark’s Hospital Rectal Case Sheet’ and contains key personal information on the patient, diagnosis and treatment. This is followed by a summary of symptoms on the second half of the front page of the form. The rest of the case sheet bi-folio contains a record of the rectal examination and the after-history. The notes often contain representative diagrams relating to diagnosis and treatment or operation.

1869 pa redacted Edited
Example case notes bi-folio (in box SBHK/MR/19/59)

In addition to the main case sheet bi-folio each case, where applicable, normally also contains a Treatment and Diet card (these actually comprise a record of drugs administered rather than diet), stats sheets and graphs for in-patients, operation and post-operative notes.

Notes selection
Example case notes documents (in box SBHK/MR/19/74)

 

Riddle diagram
Fistula operation notes for case 4635. (In box SBHK/MR/19/59).

 

Below are some of the post-operative notes of patient 4629, a sprightly, “mentally alert” 87-year old lady re-admitted in 1957 for continuing rectal prolapse problems.

1869 pa readm notes

1869 pa readm notes2
(In box SBHK/MR/19/59)

Other documentation frequently found with case notes includes correspondence, for example between the hospital and the patient’s general or other practitioner, letters from the patient to the hospital or surgeon; where an x-ray was done the X-Ray Department record sheet; where a report was necessary Pathology Department reports (urine, blood, faeces, etc.) with the specimen’s lab number and signed by hospital pathologist Cuthbert Dukes; and radiology reports, where applicable.

 

Pa path rpt w photo
Pathology report of patient with cancer of the rectum. Occasionally the reports included photographs of the tumour. (In box SBHK/MR/19/59).
Pa letter Riddle
Patient 4365, a clerk aged 43, writes to the Matron asking when he might have his fistula operation. He was to wait over three months before Mr Norbury operated, at the end of April 1933. (In box SBHK/MR/19/59).

Occasionally the files also contain the consent form signed by the patient prior to operation and administration of anaesthetic, advice sheets e.g. ‘Advice for regulating the bowels’ or how to prepare for an operation and what to bring to the hospital, or an endoscopy report where there was a follow-up in the 1970s.

Bowel regulation
Take heed.

In the 1940s, 50s and 60s as part of their longitudinal studies the hospital often wrote to cancer patients to ascertain their condition since treatment at St Mark’s (mostly as a pro forma questionnaire) or to follow-up when they learned of a patient’s death some years later. The response often came from next of kin where the patient was deceased.

Follow up 3
(In box SBHK/19/142)

The patients came from all areas of London, although particularly East London. Being a specialist hospital, however, St Mark’s was not restricted to a locality and the series includes note of patients from the Home Counties and further afield in England. The vast majority of patients were adults, however the hospital did see children and the notes include child patients.

Child pa threadworm
Pathology report of a boy, aged 13 years, seen in April 1932 suffering from continuous discharge and pain, and who had had a rectal polyp removed six years ago. (In box SBHK/MR/19/59)

Types of disorder or disease most commonly appearing in the notes were piles or haemorrhoids, fistula, cancer of the rectum, rectal prolapse, fissure, polyps, abscess, bleeding piles, colon cancer and colitis.

Preserving the case notes

On transfer from St Mark’s Hospital to the archive the series comprised 157 bundles, or what we in the archive termed ‘sugar bags’ (although they neither resembled bags of sugar nor were they definitely made of sugar paper, but anyway that was what we called them). Below is a sample sugar bag and the pile of notes extracted. Each bag contained contained the notes of 100 patients. The sugar bags were discarded.

Most case note bi-folios contained inserts that fit inside. Where they didn’t fit or where the papers were in a brown acidic folder (as those shown below) a new bi-folio of acid-free paper was cut in the conservation studio. This was to hold all the loose elements together.

Above are examples of cancer patient files which hospital staff marked with a red star and the less common green starred files which indicated a colitis patient, and a bundle including these acidic folders.

An approximately 1 inch or 2.5cm thick pile of case notes were placed into 4-flap archival quality folders and three folders placed in one box (see the first picture of this article).

The St Mark’s Hospital Project Conservator, Rebecca D’Ambrosio, constructed folders as shown above, on the left hand side and top right. However once she had left the project, pre-made folders were used for the remaining notes, shown bottom right.

The repacking required many hours of repetitive work and we were lucky to have two St Mark’s Hospital Archive project volunteers, Ingrid Sinclair and Caroline Wright, who broke the back of this task, also removing any crumbling rusty paper clips and undertaking some light surface cleaning (although on the whole the case notes were in far cleaner condition than a number of things in the St Bartholomew’s Hospital archival store rooms!).

You could say that all this re-packaging takes away a lot of the ‘charm’ of the notes as artefacts or historical ‘scenes’, and I can sympathize with this view. However, the objective of the project as laid out in the grant application to The Wellcome Trust was to ensure their long-term preservation and make them accessible to researchers, and although the acidic starred brown folders were discarded samples have been retained.

Research value of case notes series SBHK/MR/19 and SBHK/MR/20

“The cleaning was rather tedious but the contents of the cases were a trip into the past.”  (Project volunteer Ingrid Sinclair)

The St Mark’s Hospital case notes provide an informative and fascinating insight into patient care in the first two decades of the 20th century.  Unique in this specialized field of human health and medicine, they are likely to be of interest to epidemiologists, medical and socio-economic historians and clinicians.

They contribute significantly in allowing researchers to track the epidemiology of colo-rectal conditions and diseases of East Londoners in the 1930s, notably the incidence of colo-rectal cancers. This data can be viewed in context of the establishment at St Mark’s of a form of ‘cancer registry’ by W. B. Gabriel in the early 1920s and Cuthbert Dukes’ system of classifying rectal cancers by stage of spread (A, B and C) in the 1930s. Analysis of disease prevalence could be made in the context of socio-economic deprivation during the Depression era.

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Out-patients waiting area. The photograph is undated but probably taken in the early 1960s (SBHK/HP/9/7)

Medical historians can trace the development of pioneering operative and surgical methods at St Mark’s Hospital as well as other interventions such as radium therapy in the 1920s and 1930s, (notably by Charles Gordon Gordon-Watson) and make comparisons with techniques used at other general hospitals in London.

Biographers of 1920s and 1930s St Mark’s surgeons, e.g. E. T. C. Milligan, Lionel Norbury, W. B. Gabriel, J. P. Lockhart-Mummery, Clifford Naunton-Morgan, Mr Sandgrey, O. V. Lloyd-Davies, H. R. Thompson and Gordon-Watson, have an excellent long view of the operative record of their subject. Certainly, many of the surgeons whose notes are in series SBHK/MR/19 and 20 held posts at other hospitals as well as seeing wealthy Harley Street patients but the St Mark’s notes will give a good indication of their favourite operations as well as the frequency of their appearance in the operating theatre.  The mind boggles at counting the number of, say, haemorrhoidectomies Naunton-Morgan carried out during his career. (We should however remember that often it was the House Surgeon who carried out the actual procedure rather than the surgeon whose name is stamped on the record).

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O. V. Lloyd-Davies prepares to carry out a procedure, c.1940s. He was noted for emphasising the importance of not hurting patients. (SBHK/HP/9/3)

On a more bureaucratic (can we say anal?) note, historians of medical record keeping can chart the evolution of the case sheet forms themselves. There would be no excuse for historical inaccuracy in a 1930s television drama set in a colo-rectal hospital…

And what about the patients themselves? Based on the profession, address and other information recorded in each case note, studies can be made of the socio-geographical, religious and ethnic backgrounds of St Mark’s patients. The bulk of them were from the working and lower professional classes, e.g. labourer, bus driver, postman, salesman, domestic, factory worker, chauffeur, tailor, tailoress, clerk, porter, handyman, traveller, warehouseman, dental assistant, baker, cable layer, nurse. Where a patient was a member of the Hospital Savings Association this is stamped on the case notes. The Hospital Savings Association was an early health insurance scheme set up in the early 1920s whereby workers could contribute regular sums and then qualify for free hospital treatment when required.

Patient letters sometimes included with case notes provide more evidence of social class and contemporary social mores – describing a family situation, deference to the medical professional, standards of articulation, etc. There are plenty of insights into human psychology, for example, when noting how long patients often leave off reporting rectal or bowel symptoms before they go to St Mark’s (although this doesn’t account for how short or how long was the gap between symptoms and a visit to the local general doctor), or those who refuse the stigma of a colostomy. Diagnoses by surgeons are occasionally revealing, my favorite being the perfectly healthy male patient who presents with “rectal neurosis”.

A more popular social aspect demonstrated by the case notes was highlighted by project volunteer Ingrid Sinclair:

I found the names of the patients amusing. There were many long time popular names like John, William and  Emma. Then those that have fallen from use like Arthur, Edgar and Mildred and then the names that were out of fashion for so long only to resurface, Henry, Hazel, Lillian and George.

Reading through a perhaps more detailed file with letters and charts and follow-up you can start to form a picture of the person, how they came to be at St Mark’s, the relationships they formed with doctors (which were evidently largely mutually sympathetic) and how their condition affected their lives, especially if they had repeat admissions over the years. There are thousands of personal stories in the case notes, for example: a patient urgently requesting an operation to alleviate terribly painful symptoms; an 18-year old domestic worker from Yorkshire sent to St Mark’s by her employer but treatment comes too late to prevent death from complications; a patient hoping that his rectal condition is somehow connected to a war wound and so will aid his claim for a war pension.

Retention and research access to personal medical records

So, why did we keep them all? Such a comprehensive set of case notes relating to bowel disease is rare. It provides opportunity for a more in-depth study of an era, which could not be gained from just a sampled percentage. The conservation element of The Wellcome Trust Research Resources grant has enabled easy and safe access by future researchers. Of course an ideal ‘next step’ would be to digitise and index the case notes however, as most archivists know, that is a complex undertaking. As a candidate for future grant applications it would have to be priority-scored alongside the cataloguing and preservation needs of other collections within the St Bartholomew’s Hospital Archive.

The survival of patient case notes of hospitals in the UK is generally erratic and this helps to explain why post-1940 case notes of St Mark’s Hospital are not held in the Archive.  Below (left) are case files stored at St Mark’s Hospital, City Road in the early 1990s and (right) being prepared for removal to Northwick Park in July 1995 (SBHK/HP/8/15 and SBHK/HP/11/5).

 

Legislation governing access to patient data means that a large portion of the case notes (and indeed all records containing personal information), that are under 100 years old, are not generally available to researchers. Those seeking access for the purposes of formal epidemiological or academic studies should contact the Archives directly. Family history researchers can also to request a search for a relative’s case notes, although data protection legislation may mean that they are not currently able to search the records themselves. This would first require checking the appropriate registers, many of which are indexed, and obtaining the patient’s index number which could then be used to access the case notes which are filed by patient index number.

Guidance and best practice on archival retention of medical records has changed over the years for a number of reasons, and today, case notes of patients are no longer transferred to the archives for permanent preservation. The records held in the Trust’s archives are retained permanently for their historical and research value, and we do not generally take in patient case-notes for permanent retention except in relation to certain specific clinical areas identified as of particular interest. We also retain some high-level patient records such as admissions registers, but not individual case files in either digital or physical form.

Semi-current medical records, that is, those not currently needed for treatment, but which need to be retained for a specific period for medical, legal, or medico-legal reasons, are held and managed by our colleagues in the Trust’s health records department; the Records Management Code of Practice for Health and Social Care, and the Trust’s own policy on Records Retention and Disposal provide guidance on retention of health records.

 

*Note: until our online ‘live’ catalogue data is updated in Winter 2018 the new catalogue entries for the case notes will not appear. Please contact the Archives if you require further information.

 

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