UK nephrology in the 1990s & 2000s

by John Feehally

The late 1990s & 2000s were characterized by gradual incremental improvement in the care available for each individual patient with kidney disease. New therapies and other transformative breakthroughs in clinical care were few.

On the other hand there were very substantial changes in the whole landscape surrounding kidney care.

One such change was the relentless increase in the number of prevalent patients receiving renal replacement therapy (RRT), and especially a shifting demographic in which the pattern of those on RRT began truly to reflect the pattern of kidney failure – predominantly a disease of older people.

Elderly UKRR data 1997 2002

The mean age of those receiving RRT continually increased; the early days of the 1970s and 1980s when RRT was focused on younger, fitter people suitable for transplantation were long gone. Gradual growth in facilities and staff began to make it possible to treat the whole gamut of those suitable for RRT.

Other major changes was driven by successive governments, with their determination to make their mark on the NHS by ‘improving’ healthcare. New policies, changed organisation, new jargon came relentlessly, particularly after each change of government.

Such imposed changes placed an additional time-consuming burden on leaders of kidney care, both locally and nationally. Changes were typically introduced without any evidence of their feasibility or impact, nor proof that they would improve patient outcomes.  The consumption of the NHS budget in invoking the required changes was usually brushed aside on the grounds that the ‘improvements’  would result in cost-reducing ‘efficiencies’. And they seemed to come with bewildering speed, often with inefficiency generated by new tactics, new terminology and new managerial staff (or the same staff given a new title after a time-consuming period of ‘reapplying for their job’).

It is interesting and important to look back from the 2020s and see which of those many changes have proved to be ‘rearranging deck chairs’ with much change but little benefit. And which have been enduring and transformative, truly strengthening the hand of clinicians and managerial staff delivering kidney care ‘in the front line’.

A sense of ‘how it felt at the time can be seen in a lecture given by Ram Gokal in 2004 (to the North West Kidney Club). NHS in 2004 R Gokal

One troublesome theme was that initiatives came often from the Department of Health at Westminster and were applicable only to England, creating inconsistency in health structures across the four countries of the UK.

The first major change came in the 1990s when the Conservative government applied the ‘internal ‘market. Hospitals become ‘trusts’ and were the ‘providers’ from ‘purchasers’ obtained the care needed. Looking back this seems to have offered risk and no benefit to the kidney community. The risk being that purchasers may have little or none of the  specialist knowledge needed to interact effectively with those providing kidney care. A risk which persisted until proper specialist commissioning arrangements were in place.

The second major set of changes came from the New Labour government in 1997 laid out in a White Paper  “The New NHS. Modern. Dependable.” newnhs.pdf (publishing.service.gov.uk)

 Among the many priorities and proposals of that White Paper which have stood the test of time are:

Priority	National provision	Renal Speciality provision	Local implementation
Standards	NICE	Evidence National Service Framework Standards, later Clinical Practice Guidelines
Local duty of quality			Clinical governance
Scrutiny	Commission for Health Improvement, now the Care Quality Commission
Learning			Adverse incident reporting
Patient empowerment

 

The renal specialty provision

1. Evidence

The kidney community was well placed to provide some elements of the specific evidence proposed. The UK Renal Registry from its inception in 1995  was soon providing the necessary epidemiological data about RRT. The Registry produced its first dialysis audit report in 1997 using data from a small number of ‘pilot’ units. By 2008  it had achieved complete UK  coverage.

But nephrology was less well placed to provide the high quality evidence from randomised controlled clinical trials needed to evaluate old and new therapies. Compared to other specialties the kidney world was markedly behind in the extent and quality of  RCT evidence. RCTs in Nephrology 2002

 

2. National Service Frameworks

Developed by an ‘expert group’ chaired initially by Bob Wilkinson (Newcastle) and then by Donal O’Donoghue (Salford) the National Service Framework for Renal Services was published in two parts – Part 1 (2001) on dialysis and transplantation; Part 2 (2004) on broader aspects of acute and chronic renal  care.

The NSF gave an opportunity for the kidney community to describe excellent care, and  huge community effort was made to write an authoritative NSF. But looking back it is less clear to what   extent the NSF fulfilled its goal of driving improvement in care by offering the benchmark against which to judge clinical services.

3. Standards

The Renal Association had already moved  to develop Standards (soon with accompanying audit measures), which were the precursor of clinical practice guidelines. A Standards & Audit Subcommittee was  established in 1989 (during the RA Presidency of Netar Mallick) and produced three editions of a Standards & Audit document: 1^st edition (chair Ram Gokal (Manchester)) in 1995, the 2^nd edition (chair Stewart Cameron (Guy’s)) in 1997, 3^rd edition (chair Alison Macleod (Aberdeen)) in 2001.

The Standards were initially focused on chronic dialysis treatment, but expanded to include transplantation and non-dialysis care for both adults and children.

The RA remained at the forefront of this work internationally and was among a small coterie of national guideline groups (with  Australia & New Zealand, Canada, USA) which were consulted in 2003 when KDIGO was established as  a global guideline group.

Other plans in the 1997 White Paper

The White Paper declared that the initiatives would be supported by improvements in:

• Information and information technology
• Research and development
• Education and training

While it was refreshing to see the government acknowledging the importance of education & training, and also R&D, there was little additional resource of substance to promote it.

There was however a very substantial injection of funded effort to transform IT in the NHS.  This was problematic and largely ineffective and in the end many of its ambitious ideas provided unworkable.  IT expertise from beyond the NHS was brought in and there was a widespread sense that the expertise accumulated by the kidney community was neither understood nor respected (more on the National Programme for IT in Campaigning & Politics).

 

 

Last Updated on June 12, 2023 by John Feehally