The SJUH new build

The 1994 building of bespoke renal facilities at St James’s had a profound effect on practice and clinical activity. The rather cramped, low-ceilinged conversions of the initial unit  gave way to spacious, light and conveniently centralised, dedicated, spaces for all facets of renal medical provision. The transformation was liberating and generated a spirit of collaboration and comfort in the discharge of routine responsibilities. It was a convincing demonstration of the power of architecture and design to facilitate practice and social cohesion. The later paradox was that the amalgamation of the two Leeds units, together with other hospital political issues, torpedoed that topographical coherence by putting pressure on space and occupancy. There was then only a decade of coherent and comfortable productivity.

The change of context was supercharged at St James’s by the exploration of clinical IT to create an organisational culture that replaced traditional renal unit ‘ad-hocery’ (vide infra).

 Research initiatives

The 1990s coherence followed numerous research initiatives, not all of which could be completed satisfactorily.

1.Early attempts to study haemofiltration (HDF), as an effective solution to repeated, severe haemodialysis symptoms, was stymied by a contemporary preoccupation with bicarbonate dialysate. However, such a study would have required routine dialysis symptom recording, which provoked consideration of the computer registration of five common haemodialysis symptoms. In the event, there was anyway a need to triage the use of the few Gambro HDF machines for symptom relief. The new symptom records of each haemodialysis, described as  present/absent/unrecorded, were automatically plotted on the unit computer in a cusum format as a quality control of all routine treatments for severity and frequency. That integrated habit preceded the modern interest in haemodialysis symptomatology by 20 years, and subsequently led locally to exploring other means of reliably detecting dialysis intolerance. There was no early publication of dialysis symptom digitisation because of misunderstanding at a Renal Association presentation (16/05/1984), which fuelled scepticism about the usefulness of such novel measures.

2. A randomised, controlled study of the psychological engagement of patients by named nurses, following Keith Nichols’ (Exeter) suggestion and supported by the Yorkshire Kidney Research Fund (YKRF) (Sr Maureen Knapton), partly foundered on the complete absence of medical statistical support in Leeds at the time.¹ The conclusion, however, was the impossibility of sustaining continuity of personal support because of frequent nursing staff movements, both within and away from the unit. In the event, the invitation to engage in depth was at the risk of being disappointed. A small benefit for ‘socialisation’ could be demonstrated from the available results.

3.In contrast, support from an enlightened ex-nurse, industry CEO enabled several residential courses in self-psychology and patient education for CAPD staff as a contribution to the difficulties of sustaining a self-delivered, repetitive dialysis approach. The comment of Dr Karl Nolph on the need to manage depressive reaction in CAPD patients was only that underdialysis was also a cause of depression! The courses were an expression of the need to consider the psychosocial pressures of independent peritoneal dialysis.

These latter two approaches were in the tradition of research after 1962 in the USA into the psychosocial price paid by patients for their survival on dialysis.

4. Other substantial, and published, research included continuous HDF in ICU, especially in the acute liver and kidney decompensation of paracetamol toxicity (Dr Andrew Davenport). Collaboration with Medical Physics on dialysis kinetics (Dr Steve Smye) and the Leeds University Department of Statistics on renal anaemia was also productive. Four higher degrees were successfully supported up to 2007.

The topographical integration of renal management was enhanced by the clinical information system that ultimately allowed formal, single centre, operational research in renal anaemia. In combination with newer techniques of data management it was possible to rehearse a range of monitoring and assessment approaches.²

The role of clinical IT

St James’s was an ‘early adopter’ of clinical IT potential (1981), prompted by experience in Nottingham (Dr Martin Knapp).

The introduction and progressive development of clinical IT (CCL) transformed unit and outpatient functionality. With clerical support within the clinical spaces, all dialysis records and prescriptions were digitised, with anaemia management especially facilitated through monthly decision support.^3,4  It was possible to standardise clinical management in all areas of pathophysiology and sustain the ascertainment of each patient regardless of clinic attendance. The early, expected, disengagement of primary care was supplanted by digital prescribing in-house. Medication could be co-ordinated with day-case treatments, including serial, haemoglobin-contingent, dosing with ESAs. Outpatient review was facilitated by synoptic printouts for a planned encounter, to allow rapid scanning of data and flexible post-clinic feedback to the database through annotated amendments.  The diary functions and planning of transplantation were transformed by multi-position, multidisciplinary data entry and exception reporting. The suitability and availability of patients for transplantation, their ‘transplantability’ was compiled progressively on the database from any terminal and at any time. Remote, safe, dialysis satellite supervision was achieved through regular meetings and discussion. Patient records were available to consultants at home, when required for out of hours transplant review, for example.

The computer manager undertook some limited research into the introduction of Renal Patient View, published in 2012.⁵

Clinical IT complications

Later revelations took some gloss off the IT transformations. It turned out that the transplant co-ordinators mistrusted the permanent availability of IT records, which led them to print off the screens relating to their patient cohort, covertly!

The digitisation of transplant work-up turned out to be a Trojan horse for the development, finally, of ‘transplant nephrologists’. Their desire to more expertly manage tissue-typing data, and the increasing complexity of the laboratory reports, lifted the management and selection for renal transplantation away from what had been a comprehensive generalist nephrological function.

A UK Renal Registry review of blood pressure records, for digital variation that would confirm authentic recording, uncovered the rounding off of blood pressure by haemodialysis staff between dialysis station measurement and paper record, prior to data entry. The automated BP records in transplant outpatients could be shown to be authentic through a predicted, random, digit distribution!⁶

A longstanding practical difficulty was to register medical acknowledgement of returning laboratory results. That was not an issue with anticipated urgent requests but routine paper returns tended to accumulate rapidly. The issue was solved by accepting electronic laboratory-linked records as adequate. One of the relaxing benefits of the clinical IT was automatic exception reporting, which obviated the anxiety of having unrecognised aberrant results. Clinical practice became much less unpredictable, with a shift from a reactive to proactive form of practice.

The Achilles heel of medical discharge records, the addition of in-patient summaries delegated to junior staff, was improved by incorporating all clinical correspondence on the database (Andrew Webb). Such routine communications offered informed, timely feedback to primary care and future clinicians at a stroke, without the constantly deferred effort of dictating separate accounts of medical history.

Some features remained intractable. Outpatient management through lab results, for example anticoagulation, was difficult because of the unreliability of completed patient contact, solved nowadays by the mobile phone.

In summary, the technology of computing created a novel, comprehensive, organisational culture in the unit, reflecting the capacity to store, calculate and communicate information. Although that was not entirely clear at the time, being a nameless abstraction in a practical nephrological milieu, it can be seen as analogous to the functional consequences of other technological transformations, like renal biopsy for glomerulonephritis or survival through dialysis methodologies. Perhaps we should have emphasised the entity clinical computerisation, to ourselves and others, as a more coherent project. The scope of the coverage is conveyed in Figure 1, indicating specialist sub-departmental elements (data and protocols) and the topography/timing of applications (encounters and reviews).

Figure 1.

Trust IT organisation

The clinical IT hardware was not added to the hospital asset base and so upgrading and renewal was an inevitable problem. It was resourced initially by virement from regional capital. Just as important was sustaining the hybrid programme of employment of the computer manager and the status of departmental staff, who were not an element of the hospital IT department. Subsequently, the Agenda for Change initiative attempted to categorise every NHS post through discrete activities, but it was not feasible apparently to reflect the combined routine support and developmental tasks of the computer manager. The inevitable downgrading led to her resignation. The pressure to standardise job descriptions also meant that specialty departmental knowledge could not be acknowledged or rewarded, so that renal computer clerical staff found themselves obliged to work elsewhere in an apparently generic hospital IT system. The IT department was inevitably more geared to hardware and communications support and refused to sanction software development with modern programmes.

Author – Es Will

References

1. Nichols K. Psychological Care for Ill and Injured People. A clinical guide. McGraw-Hill. Maidenhead and Philadelphia 2003.
2. Will E. Intention and outcome in guideline-based nephrological practice: a suitable space for ‘clinical technology’. Nephrol Dial Transplant (2007) 22: 3110–3114 doi:10.1093/ndt/gfm516.
3. https://ukkidneyhistory.org/themes/great-british-contributions/renal-anaemia-erythropoeitin/decision-support-in-renal-anaemia-1998-2019/
4. Development and exploitation of a clinical decision support system for the management of renal anaemia. Will EJ, Richardson D, Tolman C,Bartlett C. Nephrol Dial Transplant 2007;22 Suppl 4:iv31-iv36. doi: 10.1093/ndt/gfm163.
5. Patient access to complex chronic disease records on the Internet. Bartlett C, Simpson K, Turner AN. BMC Med Inform Decis Mak. 2012;12:87. doi: 10.1186/1472-6947-12-87.
6. 6^th Annual Report 2003. UK Renal Registry. Chapter 11: Factors that may Influence Cardiovascular Disease – Blood Pressure and Serum Cholesterol. pp149. https://www.ukkidney.org/audit-research/annual-report/6th-annual-report-data-31122002.

Last Updated on April 1, 2025 by John Feehally