bedtime reading : personal health budgets: a role in kidney care?

There has been a lot of discussion about personal health budgets and the publication Personal Health Budgets: First Steps, available from the Department of Health will be of interest to you who have been following those debates. Two areas that might be relevant to kidney care are personal budgets for transport for haemodialysis and possibly in personal budgets to facilitate dialysis away from the base unit for holiday, work or other personal reasons.

If you are interested in participating you can email personalhealthbudgets@dh.gsi.gov.uk

bedtime reading: Machine perfusion systems and cold storage of donated kidneys

Organ preservation (renal) - machine perfusion and static storage. This final guidance was published on the NICE website on Wednesday, 28 January 2009.

Health Profile of England - highlights CKD as a public health issue

Health Profile England collates a wealth of public health information and is a key source document. The latest edition, published on 27 January 2008, notes that there is under ascertainment of CKD in primary care in England. It cites the Information Centre's Quality and Outcomes Framework data and the expected prevalence figures published by the East Midlands Public Health Observatory to illustrate the gap.

In 2009 the Health Survey England will for the first time contain kidney disease parameters including history of kidney disease, family history, serum creatinine for estimated Glomerular Filtration Rate (eGFR) and urinary albumin creatinine ratio. This will give us a better picture of CKD in the community than we have had previously and will increase the visibility of CKD as a public health issue.

Health Profile England is therefore intending to include kidney disease and hypertension in their next and subsequent reports.

Q & A: CKD and CKD Coding

Q: Hi Donal, I wanted to mention a few problemS with eGFR and the over 80s and coding of CKD.

• In my practice, 45-60 is the median value for this age group and 30-45 is well inside the "bell shaped curve". Could the normal values or guidelines be adjusted to take account of the normal reduction in renal function with age?
• I have a problem with the CKD codes. These are all number codes - daughter codes of 1Z1 and all at the same level. All number codes in read are codes to do with "Process of Medicine" and all disease codes start with a letter. The letter code for GU system diseases is K, and impaired renal function disorder is K08 and its daughter codes. Codes starting with the number 1 are all Symptom codes. This means that if I search for people with impaired renal function, no-one with a CKD code would be found.
• The other problem with the codes all being in the same level is that logical daughter codes do not show. By this I mean CKD 3 would naturally be subdivided into CKD 3 with proteinuria and CKD 3 without proteinuria, these latter two should be daughter codes of CKD 3 rather than on the same code level.
• I know that I have mentioned this previously but eGFR >90 does get equated to CKD 1 and eGFR 60-90 to CKD 2. Now I know that these would only normally apply in the presence of proteinuria. It seems strange therefore that there are codes for CKD1 without proteinuria (1Z18) and CKD 2 without proteinuria (1Z1A).

Dr Merlyn Wilcox, GP Partner, GP trainer and Hon Senior Lecturer in Primary Care and General Practice, South Birmingham PCT

A: Dear Merlyn, many thanks for your questions. I do appreciate that MDRD formula has limitations and is perhaps best considered as a population tool. Perhaps most important is whether or not the population being identified has increased morbidity and mortality - I think it is likely due to associated cardio-vascular disease.

I completely agree with regard to the coding. The statement "well I wouldn't start here" springs to mind. I think you are probably more familiar with the coding than I am but my understanding is also that codes beginning with 1 are "history/symptoms". Those more familiar with coding have advised that once something is in the hierarchy it is generally best left there. In CKD Stages 1 and 2, there needs to be evidence of kidney damage and while that is often signalled by a raised albumin creatinine ratio in the urine, other markers of damage can occur without proteinuria – such as ultrasound evidence of scarring from Pyelonephritis or Polycystic Kidney Disease. You may or may not know that there is a kidney group actively working on a SNOMED CT approach and I think will be a major advance.

The recent NICE guidance stating that ACR is the proteinuria test of choice and the inclusion of annual ACRs as part of the CKD section of the Quality and Outcomes Framework will soon result in many more quantitative proteinuria tests and at that stage we will be able to move towards considering the CKD population in a more dynamic way. The rate of change of eGFR for individuals is perhaps more important than the absolute value or indeed whether or not that value is in the "normal" range.

The situation is moving rapidly and your comments and observations are helpful to keep the momentum in the correct direction.

Dialysis services to remain a specialised commisioned service

The National Specialised Commissioning Group consulted on dialysis services and the renal definitions in the Autumn of 2008 and have accepted that kidney services should remain within the specialised services definition set.

A paper outlining the details, inclusions and coding will be available shortly.

18 week CKD pathways updated

The chronic kidney disease pathways have been updated with a number of clock moves and changes to the text to clarify some points of confusion. See the new pathways on the 18 week pathways website

bedtime reading: supporting people with LTCs, commissioning personalised care planning - guide for commissioners

This guide will provide commissioners of health and social care services with information and support they need to embed personalised care planning in their localities. This should ensure that people with long term conditions receive more individualised care and services to help them manage their conditions better and achieve the outcomes they want for themselves. The guide has been developed in collaboration with stakeholders across health, social care, the voluntary and independent sectors and patient representative groups.

Contact details for questions about the National Renal Dataset

If you have questions relating to data item definitions or the implementation of the National Renal Dataset, please contact the National Datasets Service. Information is available on their website which includes FAQs and a conformance check list to support preparation for dataset implementation.

If you have a specific question, please contact the team via email datasets@ic.nhs.uk (stating ‘National Renal Dataset’ in the subject line) or call The IC Contact Centre, telephone 0845 300 6016 during office hours.

Are you or is a relative one of the missing millions?

You, a friend or one of your relatives might be. Recognition of kidney disease has increased exponentially since publication of the NSF. Although 4% of the adult population have been identified and are registered as having CKD, this is less than half of those we know are affected.

Dr Maarten Taal (Consultant Physician at Derby City General Hospital) and Nina Whitby (interactive tools lead, NHS Choices) have worked hard toward producing a new risk assessment tool based on the NICE CKD Guideline which is now available for everyone on NHS Choices.

This tool, along with the implementation of the NICE Guideline, the revision of the Quality and Outcomes Framework (to include regular urine, albumin creatinine ratio testing and the promotion of vascular checks that include a kidney disease section to be rolled out from April 2009 should help us close that gap between the recorded and predicted prevalence allowing many more people to benefit from better management of their early kidney disease.

bedtime reading: the challenge of assessing dignity in care

"On our own terms: the challenge of assessing dignity in care''

It reports on research carried out by the Picker Institute and sets out a framework for measuring dignity. The report is available for download from the Help the Aged website: http://policy.helptheaged.org.uk/_policy/default.htm
See also http://press.helptheaged.org.uk/_press/Releases/_items/_Help+the+Aged+calls+for+compulsory+assessment+of+patient+care+and+respect.htm