Q & A: Kidney Outpatients

Q: Dear Donal, we have been told by our PCT that they will no longer pay for consultations if our follow up to new ratio is above the national average. Please could you comment on this? Dr Fiona Dallas, Consultant Nephrologist, Renal Unit, Carlisle

A: Dear Fiona, It was a pleasure to meet at the Cumbria & Lancashire Kidney Care Network on 29 June. Thank you for raising the issue of kidney outpatient visits and seeking my views and comments on new to follow up ratios.

The Modernisation Agency’s publication 10 High Impact Changes for Service Improvement and Delivery published in 2004 highlighted the need to avoid unnecessary follow-ups. It identified orthopaedics, ENT, ophthalmology and dermatology as specialities where there could be 0.5 million fewer follow-up appointments per year. The first question should be “is a follow up visit really necessary?”. Automatic secondary care follow up should be used only where necessary and clinically appropriate. Ten High Impact Changes suggested that hospitals should aim to have an overall new to follow-up appointment ratio of below 1:3. It is worth reading this document because it contains advice which is still relevant today such as co-developing services with patients and carers, setting local goals and working closely with commissioners. The 18 week pathway for chronic kidney disease is another valuable tool that you could use to monitor flows and activity.

Kidney care has changed considerably over the past few years since the publication of the NSF and the move to systematic estimated Glomerular Filtration Rate (GFR) reporting with inclusion of a CKD domain within the QOF for primary care. Prior to 2006, early kidney disease was rarely detected in primary care and indeed advanced kidney disease was often missed until very late. In many parts of the country colleagues in primary and secondary care are working together to achieve the local implementation of the Royal College of Physicians and now NICE Guideline 73 so that people with kidney disease are seen and managed appropriately across the whole pathway.

For instance, Wirral NHS has developed a local enhanced service for primary care management of chronic kidney disease and should be one to watch. It is based on NICE Guideline 73 for chronic kidney disease and the local operational guidelines have been developed by general practitioners and renal physicians together.

In chronic diseases and particularly where the situation has been changing so quickly, with all the education and system support gaps that that has revealed, I think there are considerable advantages to approaching service design including outpatient capacity and metrics based on the patient pathway rather than an arbitrary ratio.

Clearly, people with stage 4 or 5 kidney disease, require considerable interaction with secondary care for the planning of renal replacement therapy, delivery of dialysis and transplant follow-up. Many people with primary kidney disease eg PKD or those on treatment for glomerulonephritis benefit from regular care follow up and clearly people receiving dialysis or with a functioning kidney transplant need follow-up care. Conversely, the majority of people with stage 3 CKD do not require continuing follow-up in secondary care but in a proportion with primary kidney disease, rapid decline, complications of chronic kidney disease or “treatment failures” specialist input is necessary to optimise outcomes.

NHS Kidney Care is currently supporting a range of initiatives to support early detection, provide decision support into primary care and to pilot virtual nephrology services. This is in addition to the broad range of education materials that we have produced and the development of quality metrics across the whole pathway. I would be more than happy to share details of these other initiatives with you at an early stage if you think it would be helpful in your local service design planning.

I am encouraged by the excellent work that I have seen across the country. Early detection and appropriate management of chronic kidney disease aligns completely with the quality, innovation, productivity and prevention agenda.

Parliamentary Q: Kidneys:health education

Mrs. Dean: To ask the Secretary of State for Health pursuant to the answer of 8 July 2009, Official Report, column 868W, on kidneys: health education, (1) what plans he has to consult (a) patients and (b) clinicians prior to the publication of his Department's information leaflet on identifying unhealthy kidneys; and what plans he has to ensure the wide availability and distribution of the leaflet;

(2) when he plans to publish the patient information leaflet on identifying unhealthy kidneys; and what plans he has to publicise its launch.

Ann Keen: The patient information leaflet on proteinuria is being developed in partnership with clinicians and patients. This is to be part of a pack of information on proteinuria testing already published on the Department's website for general practitioners and laboratories.

This can be found at:
www.dh.gov.uk/en/Healthcare/Secondarycare/Pathology/DH_096049

We are in the process of determining how best to promote the leaflet widely before publication by early autumn.

Bedtime reading: MRSA : your help needed - who is your contact person?

Meticillin resistant Staphylococcus aureus (MRSA) is an important cause of infection associated with healthcare. All episodes of MRSA bacteraemia in England are reported to the Department of Health via a web-based data capture system managed by the Health Protection Agency. The numbers of MRSA bacteraemia reported by each NHS Trust are published every quarter and since this system was established good progress has been made in reducing the rates of infection.
Since many of these infections occur in patients established renal failure (ERF) additional data on the type of vascular access of these patients has been collected by this system since 2007 and published in the UKRR annual report. The system for capturing this enhanced data relies on sending this email alert to the renal unit whenever a patient in ERF who develops MRSA bacteraemia is recorded in the system. The alert asks the renal unit to access the system to complete the relevant data for that patient. Each renal dialysis unit in England should identify 2 contacts to receive these email alerts and be responsible for completing the data on MRSA bacteraemia.

I have written to all renal unit CDs outlining the system that the Health Protection Agency and Trusts have in place.

Use iView to get the most out of the Patient Transport results

The Patient Transport results are available on NHS iView, The NHS Information Centre's online analysis system. You can cross reference results and gain a picture of patient transport services in your area and there is a user guide.

Find out more and access the system here

related blogs
Patient transport survey 2008, first phase launch
Patient transport survey results launched

Bedtime reading: Programme budgeting for kidney care

The 2007-2008 programme budgeting data was released this on 16 July. It allows organisations to gain a better understanding of where NHS resources are being used. The programme maps all PCT and SHA expenditure, including on primary care services, to 23 programmes of care based upon medical conditions. Renal care is now split from 17 problems of genito-urinary system into 17b. The overwhelming majority of the renal spend is in secondary care. It covers both dialysis and kidney transplantation; it makes interesting reading.

Parliamentary Q: how much ... spent on research into kidney disease

Mrs Dean: To ask the Secretary of State for Health how much his Department spent on research into (a) chronic kidney disease, (b) acute kidney injury, (c) kidney cancer, (d) dialysis, (e) end-of-life care for kidney patients and (f) other kidney disease in each of the last three years; and how much it plans to spend on such research in 2009.

Gillian Merron: Both the Department and the Medical Research Council support kidney disease research. Available annual expenditure data are shown in the following table. The National Institute for Health Research’s (NIHR) clinical research network is currently supporting 38 studies concerned with renal disease.

View the table here, or follow the link

Parliamentary Q: what health education progs .. raise pubic awareness of kidney disease

Mrs Dean: To ask the Secretary of State for Health what health education programmes his Department has initiated in the last 12 months to raise the level of public awareness of chronic kidney disease; and what further such programmes are planned in the next 12 months.

Ann Keen: Awareness of the risk of chronic kidney disease is being raised as part of the NHS Health Checks programme and we are also developing a patient information leaflet on identifying unhealthy kidneys, which could lead to earlier identification of chronic kidney disease. This information will be made widely available. There is also information on “knowing the symptoms of kidney disease” including a self-assessment tool on the NHS Choices website which can be found at: www.nhs.uk/Tools/Pages/Kidneydisease.aspx http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090708/text/90708w0019.htm

Pyrenees coast to coast

You may have been watching the Tour de France in the Pyrenees – it gives you some idea of the scale of the ambition of Paul Stevens and John Scoble on their British Renal Society Pyrenees coast to coast walk. Paul is keeping a journal and as I see I got a mention on 6 July the least I could do was reciprocate. He has also celebrated a birthday this week so "happy birthday" Paul. John also texted me seeking advice about blistering of his feet!

There are photographs and I was pleased to see I had chosen a better week to be cycling in and around St Jean Pied de Port than John and Paul who had quite a rainy first week.

Do look and do sponsor Paul (raising money for British Renal Society) and John (raising money for Guys & St Thomas' KPA). You can also listen to John waxing lyrical on his audio diary.

Aneurysms in PKD – should we screen?

Q: Hi Donal, I hope this finds you well. I’m writing from a table outside a Parisian café, on my way back from Zurich after a weekend hosted by a big pharma drug company. An interesting couple of days – I think not a ‘normal’ meeting. It was a facilitated open forum, with 13 transplant patients from Europe and the US, where they seemed to genuinely want to know what they might think of doing – above and beyond producing drugs – that would help patients. I was prompted to write after seeing a post to the PKD email group that Tess Harris runs – which suggested it was standard procedure in France for dialysis-transplant patients to have a brain scan. I’ve been aware for some time that PKD patients have an above average risk of getting aneurysms in the brain. I’d never heard that dialysis patients in general had risks along these lines. It’s possible of course that Michael who posted this, is mistaken (though I know he lives in France, and has been a PKD patient there for many years). I was just wondering what the attitude is to this in the UK. Best wishes, Andy Williamson, Chair, Guys & St Thomas' KPA

A: Dear Andy, I am pleased to hear you are enjoying the pleasures of Paris and that the PKD email group that Tess has established is thriving. Inter-cranial aneurysm rupture is a rare but devastating complication of autosomal dominant PKD. It occurs in about 1 in 20 people with PKD without a family history but in up to nearly 1 in 5 people in whom there is a family history of rupture. This compares with about 1% in the general population. Rupture also occurs on average 10 years younger in people with PKD; the youngest reported case being a 6 year old boy. Aneurysm rupture is associated with a combined mortality or severe residual disability rate of about 35-55%. However, treatment of aneurysms by either neurosurgical clipping or endovascular treatment also carries an unacceptably high combined high mortality – severe disability rate of 21-34%. Some individuals make remarkable recoveries such as Alberto Contador who collapsed following an aneurysm rupture during the Vuelta a Asturias, Spain (May 2004), but who has subsequently gone on to win the Tour de France in 2007 and may possibly in 2009.

In the general population, size greater than 1 cm, location and history of previous rupture are the major risk factors for rupture but in PKD the situation is less certain and it has been suggested that half of all ruptured aneurysms in PKD are under the 1 cm threshold. Aneurysm formation rupture also appears to run in families and there is some early evidence of genetic linkage and risk. Recent studies have concluded that the outlook for asymptomatic aneurysms in PKD is excellent. The only factor that seemed to correlate with development of new aneurysms was a history of previous rupture. Given this uncertainty we really don’t know which patients we should be screening for asymptomatic aneurysms.

Patients who have suffered a previous rupture appear to a higher risk group who require life long screening. For asymptomatic patients, the presence of a strong family history of rupture (at least 2 first degree relatives) remains the best predictor of rupture (it increases risk by 4.4 times) and the case can be made for screening this group. The evidence does not support routine screening of all PKD patients but all PKD patients should have good control of blood pressure, be advised about smoking cessation and limiting alcohol consumption to within health limits as these treatable and lifestyle factors are key determinants of rupture. In the future we may have genetic tests that help us assess risk but at the moment there isn’t a UK wide consensus on the approach that should be taken in people with PKD who might have asymptomatic aneurysms. Best wishes, Donal.

Polycystic Kidney Disease Charity (UK)

Cause for Concern “registers”

“How people die remains in the memory of those who live on” Dame Cecile Saunders, Founder of the modern hospice movement.

I was speaking at the 7th supportive kidney care course that Edwina Brown (Professor of Renal Medicine, Consultant Nephrologist), and her colleagues at Imperial College have been running for 7 years. I spoke last year and so putting the presentation together, listening to what other, more expert, speakers were saying and then chatting to the delegates provided a good opportunity to review progress over the past year; there has been considerable progress – thanks to a whole range of people. I would particularly single out Stephanie Gomm (Consultant in Palliative Medicine, Salford Royal), and Ken Farrington (Consultant Nephrologist, Lister Hospital, Cambridge), who led on the production of the End of Life Care in Advanced Kidney Disease: A Framework for Implementation with Bev Matthews (Director, NHS Kidney Care) and Claire Henry (Director, National End of Life Care Programme).

There was good attendance with speakers from a range of disciplines including Sara Davison from Canada and a lot of our leading lights from the UK Palliative Care and Kidney Care communities. Much of the programme was in workshop despite being oversubscribed. I could see that worked well. There was a good range of nurses, doctors, social workers but I am not sure if there were any patients or carers and I would certainly recommend next years course to pharmacists and dietitians who play such an important role in the support and management of conservative kidney care either directly with patients and families or increasingly, by transferring skills and knowledge working with primary care and community teams.

End of Life Care in Advanced Kidney Disease provides a detailed framework for implementation – if you use it, it will do what it says on the tin. A show of hands at the course however revealed only 3 people who have a cause for concern register in their kidney units. At least 2 of those individuals are from the same unit – the Lister Hospital in Stevenage.

Making it happen requires leadership at local and national levels. Local actions include setting up a cause for concern register, establishing a lead clinician for conservative kidney care, ensuring there are key workers in end of life care in each kidney unit and that there are formal links with palliative care and primary care. There are a range of national actions that are also necessary. These include the development of Quality Markers for End of Life Care. This was also recommended by the SHA Pathway Chairs for the NHS Next Stage Review, who identified the need for a national approach in order to raise the quality of care for people at the end of life. The Quality Markers have now been published. I would strongly encourage the involvement of local kidney patient associations in the steering groups for conservative care development and to help and advise in the shaping of these important services. We wouldn’t dream of developing dialysis services without patient involvement and remember conservative kidney care isn’t a no treatment option. In many ways, it requires more care and attention.

Point of care testing for Albumin Creatinin Ratio in urine

The Centre for Evidence Based Purchasing has produced a buyers guide for point of care devices for the measurement of ACR in urine and somewhat perplexingly, in the same document, measurement of HbA1c. It is recognised that point of care testing provides increased choice for people but that quality control, clinical governance arrangements and information technology links to ensure integration into the clinical record are essential components when POCT is adopted. The buyers guide can be downloaded free from the Buyers Guide website. It again emphasises the importance of quantitative ACR measurement as recommended by the NICE Guideline 73 on chronic kidney disease and provides detailed advice on operational considerations as well as costing. The market review contains a detailed analysis of all the devices that were on the UK market in June 2008. All the devices reviewed are CE marked.

The guide will be a particularly valuable resource for Primary Care Trusts and laboratory services who might be considering such options for the early identification and management of CKD or to extend the scope of NHS Checks to include a comprehensive kidney assessment as is being considered in some locations.

LES, DES or Alex – who would provide better kidney care?

oThis isn’t a starter for 10. LES stands for a Locally Enhanced Service and DES stands for a Designated Enhanced Service. Alex is Alex Crowe (Consultant Renal Physician, Arrow Park, Wirral). Now Alex is a great guy and a super physician. You would know that Alex and his colleagues have been working hard to raise the profile of kidney disease and to support general practice by looking at the I detection rates for kidney disease that are revealed in the Quality and Outcome information – NHS Wirral has one of the best detection rates in the country.

Do you know your local PCT’s detection rates? The information is available practice by practice on the Information Centre website.
So, back to the question, would it be LES, DES or Alex? You might be thinking Alex and in certain circumstances you would be right but for the majority of people who do not have advanced kidney disease, management by primary care in the community is usually the most appropriate and best placed for care to be coordinated from. Primary care services can be truly integrated. General practice is a speciality in its own right and has the facilities, teams and structures to be able to deliver high quality kidney care for the majority of people with CKD.

NHS Wirral have implemented a locally enhanced service for chronic kidney disease which supports implementation of the NICE Guideline 73. If you want to read or copy them they are available here.

Wirral Guidelines for the primary care management of CKD stage 3
NHS Wirral Local Enhanced Service (LES)