Renal NSF Update July 2007

The second Renal Services National Service Framework (NSF) progress report was launched on 18 May by Rosie Winterton, Minister of State, at the newly opened Department of Renal Medicine at Doncaster Royal Infirmary. Copies of the report are available at the Department of Health (DH) website.

The Renal Policy team, Heart and Stroke team and Diabetes team now form the vascular branch at the Department of Health to facilitate joined up policy and implementation across the broad vascular access agenda. The Children's Transplant and End of Life Teams work in adjacent areas.

NSF workshops
The renal policy team has held workshops on:

• Transport
• Haemodialysis capacity
• Quality and patient experience
• Home dialysis therapies.

Healthcare commission national renal audit
The Healthcare Commission will be conducting national renal audits on the quality of:

• Management of early kidney disease.
• Timely creation of vascular access for haemodialysis.
• Transport arrangements for haemodialysis.

The scope for this project was completed in July 2006. The required notice to Official Journal of the European Communities (OJEC) was entered in August 2006 for interested parties to express an interest (EOIs) in undertaking the national audit project. EOIs were received in August 2006. Funds are available from 2007/08 and the interested potential suppliers have been sent the tender specification to respond by July 2007.

Action learning sets 2006/07
These action learning sets commenced in August 2006 and are nearing completion. They comprise:

• Transitional care for young adults with kidney disease (Great Ormond Street anD Birmingham Children’s Hospital/University Hospital, Birmingham)
• Acute Kidney Injury (West London Renal Centre, Preston Royal Hospital and Lancashire Hospitals)
• The year before RRT (Addenbrookes Hospital Cambridge, York District General Hospital)

Early kidney disease
The consequences of eGFR reporting and the inclusion of CKD points in the Quality Outcomes Framework of the GP contract are of great interest.

• Quality Management and Analysis System (QMAS) data for 2006/07 shows an SHA level reported prevalence of 1.6-2.8%.
• Clinical Directors have been advised to work with their PCTs to improve detection, early management and referral.
• eGFR reporting has been reviewed by the Pathology team; greater than 90% of UK NEQAS labs are now reporting eGFR.
• Discussions have been hosted between the BNF, RA and JSC/UK CKD Guidelines Group on GFR reporting and medicines management.
• The Pathology group has been asked to advise on proteinuria/albuminuria currencies, costs and practicalities.
• Submissions have been made by the Vascular Branch to the 2008/09 QOF revision.

Health Survey England

• Proposal to assay historic blood samples submitted
• Proposal for urine ACR and PCR evaluation in future surveys submitted.

Payment by Results (PbR) and programme budgeting

• Renal expenditure to be separately itemised in programme budgeting from 2008.
  Renal Advisory Group established to provide comment and advice on PbR calculations and implementation.

NICE guidelines and topics

• NICE CKD guidelines – expected Q2 2008.
• NICE – DH vascular branch co-ordinating work on cardiovascular risk assessment.
• NICE topic selection board for cardiovascular topics (CHD and stroke, CKD and DM).
• Diagnostic technology appraisal - proteinuria - scoping document requested.

Knowledge management

• The Renal National Electronic Library for Health launched on World Kidney Day.
• NHS Institute for Innovation and Improvement collaborative website pilot in progress.

Renal dataset
Support for collection of items in the national renal dataset will be obligatory for Local Service Providers, which will facilitate information exchange and comparison.

• Draft approved at Information Standards Board April 2007.
• Pilots in 5 of 9 volunteer units imminent.
• Expected to be mandated for collection from April 2010.

Donor task force

• The Donor Task Force is due to report in June 2007 and represents a real opportunity to make a substantial difference to donor rates nationally.
• The focus will be that organ donation is an issue for the whole NHS and indeed wider community not just the transplanting centres.
• Comparative data will be used to leverage improvements – possibly linked to national audits.
• Detailed recommendations about governance arrangements for a national transplant donor network are expected.
• The importance of increasing donation rates in the black and ethnic minority communities is expected to be emphasised.

HCAI/MRSA renal project

• High impact intervention – renal dialysis catheter care, published.
• Renal toolkit to assist implementation of saving lives published.
• Conference on HCAI/MRSA on World Kidney Day.
• Renal surveillance pilots of extended national mandatory enhanced surveillance system (MESS) reported successfully and renal pages in the MESS are now live.
• Targeted support to specific renal units – ongoing.

Independent Treatment Sector Centres

• E16 scheme contracts awarded - Cheshire/Mersey and Yorkshire.
• E16 scheme – commercial close on 20 June 2007. FBC approve for stage commenced.
• Tranche 4 National Renal Scheme - procurement of area specific HD services in progress.

End of life care strategy
It is intended to publish and End of Life Care Strategy by December 2007.

Working groups on the following have been established:

• Care Pathways and Service Models.
• Commissioning, levers for change.
• Analysis and modelling.
• Care homes.
• Measurement of quality and outcomes.
• Workforce development.
• Reports from each work stream are in preparation with a view to the EOLCS drafting in September/October 2007.
• The National Liverpool Care Pathway for the dying patient renal project will be producing guidelines for LCP drug prescribing in advanced chronic kidney disease in the near future.

Q & A - Anaemia in Renal Patients

Q: My name is Cathy Johnson, Anaemia pre dialysis coordinator at Derby Hospital & President of ANSA. All stakeholders at the recent dialysis summit would, I am sure, recognise the positive impact optimising care of the patient with anaemia has on outcomes. However, Registry data shows variation between units achieving accepted standards in dialysis patients. A key message from the summit was the inequity of service provision and our members describe inequalities in thresholds for intervention in both dialysis and pre dialysis patients, targets and provision of ESAs.The current market place was described as being both positive and one responsive to negotiation (from which I am sure many units have benefitted), allowing the opportunity to treat more patients without increased costs. Certainly, we have an ever changing market place with potential new products coming on line. Early idintification of these patients (with early intervention impacting positively on outcomes) was mentioned, however, it has been suggested that if we identified those patients with renal anaemia, the service in its current configuration could not manage.Our members describe many patients with stable renal function (who could be managed in primary care), being referred to the renal service purely for management of their anaemia and, whilst it is appropriate to manage complex cases in-house, isn't there an opportunity here to engage with primary care to deliver anaemia management to the more stable patient? It should of course be acknowledged that this approach may present a risk to secondary care.Anaemia is managed by a variety of healthcare professionals, however it is predominantly nurse-led and some of these posts are still soft funded. In this day of restructure and reorganisation some of our members have expressed vulnerability within their role and we have seen examples of highly experienced renal nurses being lost to the service.

A: Dear Cathy, many thanks for your comments. The ability to be able to treat renal anaemia is one of the outstanding achievements that has occurred during my professional career. I recall John Saville (now the Professor of Medicine in Edinburgh) telling me about the treatment of the first patients at Hammersmith Hospital and describing the "miraculous change" as being akin to what Banting and Best must have felt when they first administered insulin. Those who have entered renal practice after 1990 may not fully appreciate the dramatic change that Erythropoeitic stimulating agents have made to kidney care - we should not minimise the remarkable improvement in quality of life that ESAs can bring although I think most of us are disappointed that the recent trials haven't shown cardiac or renal benefits. The variance that you point out is disturbing. As you say, we know from the Registry data that many units do not achieve the targets and standards set by the NICE Guidance. The Registry reports on dialysis patients and I am pleased that Charlie Tomson (Chaiman of the Registry) with the British Renal Society, is piloting a virtual quality collaborative to share best practice in anaemia management in that setting. The NICE Guidance is quite clear that any person with CKD who might benefit from ESA treatment should be considered and there is no rationale to set different treatment thresholds and goals for patients with advanced kidney disease who are not on replacement therapy. You are also probably aware that many transplant recipients have low haemoglobins that go untreated. The systems that we have in place for the dialysis programme are often not utilised for our transplant patients.

Cathy, you are right that we have to do things differently if we are to achieve our goals of a world class service and improved patient experience. The way we are currently configured, we are set up to fail - we respond to problems rather than manage risk and take avoiding action. CKD is now well recognised in primary care but the imlementation of the UK CKD Guidelines which provide an algorithym for monitoring haemoglobin, renal function and other relevant parameters is not part of the quality and outcomes framework. There remains a big eduction gap. I am hopeful that the forthcoming NICE Guidance on CKD will help address some of the issues of what could and should be done in primary care as well as provide guidance on models of care.

Currently we have people on hospital waiting lists for intravenous iron or travelling long distances by hospital transport to have the iron - this does not make sense. We need to implement a chronic disease management model of care for people with kidney disease - central to that is coordination and care planning.Many aspects of kidney care, such as aspects of anaemia management, could be more effectively delivered in primary care or the community than in hospitals. The model of care needs to be worked out to provide the best patient experience - providing high quality is the best way of providing value for money. Currently we don't have a tariff for pre dialysis care but such a mechanism could be used to drive integrated care for patient benefit and need not be a mechanism for competition which in this situation might put coordination and seamless care at risk. I would be very interested in discussing further with yourself and other ANSA colleagues how we might promote more effective integrated models of anaemia management in this patient group. Like you, I have been dismayed at the behaviour of some Trusts where highly experienced renal nurses have been made redundant to balance the books in the short term. Such staff often have had leadership roles within the multidisciplinary team - the impact on team morale and patient experience can be very negative. In the end, that will not be cost saving - poorly managed patients will access more expensive aspects of our service such as inpatient care disproportionately. The multidisciplinary team is the key to good outcomes for patients before dialysis, for transplant recipients, on dialysis and for those who choose supportive and palliative care.

Twice weekly haemodialysis - what would your advice be?

Historically, many centres have temporarily coped with capacity constraints by starting patients new to haemodialysis on twice weekly regimes or even reducing those with some residual function from thrice weekly sessions. In the past decade this has become a less frequently used option in all but a few centres. At the dialysis summit I was asked what my advice woud be to a Clinical Director contemplating such a strategy because of demand outstripping capacity. The scenario is already being discussed in dialysis units. In many place, perhaps most, the plants for additional haemodialysis capacity beyond 2008 are not yet concrete. A simple "I wouldn't contemplate it" ducks the issue. But these capacity crises do not occur overnight. The haemodialysis programme has to be seen in the context of the whole service - when it's at full stretch and we are juggling spaces it's difficult to stand back and try to optimise other aspects of end stage renal disease management.

Paradoxically, undue pressure on maintenance haemodialysis services diverts resources and attention from preparation and planning, home therapies and supportive and palliative care - each of which in their own way when delivered efficiently can reduce the demand on maintenance haemodialysis.

My response was that, in all but exceptional circumstances, twice weekly haemodialysis is inadequate - I believe that it is a patient safety issue; a blanket policy to arbitrarily start or reduce patients to twice weekly dialysis is indefensible. If some patients were to be "offered" twice weekly haemodialysis they need to be very carefully selected, residual renal function and dialysis adequacy needs close monitoring. Patients should be fully informed in writing of the rationale and risks of twice weekly dialysis. The triggers for a move to thrice weekly maintenance haemodialysis should be explicit and agreed with the patients at the outset.

If a systematic strategy is being contemplated because of either short term, eg unexpected and severe nursing shortages; or long term planning failure, not only clinicians but also management (and I would suggest the Chief Executive Officer as the most appropriate management colleague, who, with the consultants will carry the medico-legal risk), commissioners, SHA colleagues (who have a performance managment role for the system) and patient representatives should be involved in the discussions and decision making processes. The National Kidney Federation Advocacy officers now sit on many network groups and are a persuasive force for patient interests. Negotiating with patients in one room keeps the clinician and managerial focus on the task in hand - the quality of services. The discussions should not occur just between doctors and indeed should not occur without considering the broader context, investment and options available.

Twice weekly haemodialysis is not part of a world class quality service and we should not tolerate it - it is an issue I have raised at Strategic Health Authority and commissioning level in several parts of the country. If such a scenario is being contemplated in your unit or network please let me know - my role involves offering assistance in such circumstances.

Q & A : The Right to Choose

Q: The right to choose (130707)As a kidney patient, I am concerned about my right to choose. I understand that it should be my choice what type of dialysis I receive, where I receive it and when I receive it. It should also be my choice to go somewhere else in the UK on holiday. Will I be allowed this choice? Most important of all, will I be allowed to choose whether I put my name on the National Transplant list?


A: Choice is one of the central underpinning principles of the NHS. People with kidney conditions are entitled to choice as much as people with any other medical condition and this is a central theme of the Renal NSF.I know that sometimes people don't feel they have permission to make choices or ask for certain things. That's a culture that most kidney units are keen to change. Many people like to get the views and advice of their loved ones as well. The kidney unit staff should be able to explain the situation to your family and friends if you wish. Except for a few people where clinical circumstances close off certain options, choice of dialysis mode, for example, should be based on your views on which option will fit in best with your life. This is your choice and your team of doctors and nurses are there as a resource to share their knowledge so you can make an informed choice. Where and when you dialyse is more difficult. Peritoneal dialysis gives people almost total freedom. Home haemodialysis fixes the place but time and frequency are largely for the individual to determine.The options for those opting for, or only suitable for, hospital or satellite based haemodialysis are clearly more restricted. Most units run 2 or 3 shifts and very few units have the spare capacity to be able to offer much flexibility. To pretend that someone on hospital based dialysis could choose to dialyse on, say, Monday evening, Thursday afternoon and Saturday morning one week, and then a different pattern the next would be foolish. Tailoring dialysis around a busy and changing work schedule is very challenging, especially as spare capacity is in very short supply in most units. You should still, however, discuss what you want with the dialysis team. The dialysis unit is there to provide dialysis for thos who need it - not the other way round. Your responsibilities include giving good notice of a request to change a shift when you can - such a request should be met with respect and consideration. A mutually respectful relationship, a partnership if you like, is part of high quality care.Given how little spare capacity there is, the ability to dialyse away from one's base unit for work, holiday or family occasions is severely restricted. We have seen a large growth in the number of dialysis units since the NSF was published, but given the constant increase in the number of people needing dialysis, that hasn't created much spare capacity. I would like to see a system where resources followed the patient, encouraging units to release any spare capacity for visitors from other units, and that might come to pass in a few years' time when Payment by Results is introduced into renal services. I appreciate how frustrating it is for people when they can travel anywhere else in Europe and receive treatment almost as a matter of routine, but find it difficult to visit family and friends in a different part of the UK. There isn't a magic wand to wave at this problem and all I can say is that I appreciate the difficulties this causes and am looking at how we can cut through them.As far as transplantation goes , it is your right to ask for transplantation to be considered, and even before most people ask, the CKD team should be exploring this option. Tests that are needed to assess suitability should be performed in a timely fashion and once the surgeon has discussed the risks with you and you are both prepared to accept them, transplant listing is your choice. I recommend that all suitable patients are transplant listed 6 months before dialysis is likely to be needed. If live donation is a possibility, it should be done, where possible, before the dialysis is required. For the unfortunate 30% who arrive unprepared and needing urgent diaylysis, transplant listing should be fast-tracked.