Monday, 30 July 2007
The Donor Task Force should be reporting soon and will have recommendations that all hospitals and ITUs will need to take on board. But we don't need to wait for that, or restrict ourselves for those "must dos" - I know that many people put a lot of effort into the activities during National Transplant Week earlier in the month (left - photo of Donor Bus in Bolton manned by staff and patients from Hope Hospital, Salford - 506 sign-ups received on the day!) .
I have to say however that I was disappointed that there were only 2 or 3 people wearing the blue lapel ribbon at the Dialysis Summit that week - getting a kidney is a key concern for people on dialysis who are on the list, or are suitable but are not on the list! National Transplant Week did however increase web-based registrations on the OCR by 250% and during that week there were over 180 transplant related news stories in the press.
The Chief Medical Officer's report also drew attention to the healthcare associated infections and, whilst he didn't cite the fact that around 10% of MRSA cases occur in people on dialysis - usually associated with line sepsis, we all know that to be the case. You may have read earlier about the £50 million injection to re-double the efforts to reduce healthcare associated infection and MRSA in particular. I have written out to each of the clinical directors with details and with the hospital episodes statistics on access surgery. The comparison between the different regions and Trusts is fascinating. But we knew that to be the case from the recently published Renal Association - Kidney Research UK Vascular Access Audit. The Healthcare Commission and the Mandatory Enhanced Staphylococcal Surveillance (MESS) reporting will keep the spotlight on MRSA over the coming year. Also expect to see a lot more about Clostridium Difficile.
As well as the usual reading documents, Sir Liam Donaldson also produced a number of video podcasts on healthcare associated infection and organ transplantation.
Access the full report, chapters and video podcasts
Friday, 27 July 2007
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.
The renal policy team has held workshops on:
- 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.
- The Renal National Electronic Library for Health launched on World Kidney Day.
- NHS Institute for Innovation and Improvement collaborative website pilot in progress.
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.
Wednesday, 25 July 2007
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.
Thursday, 19 July 2007
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.
Friday, 13 July 2007
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.
Capacity was of course identified as a key issue but there was an in depth discussion about patient choice and experience - Alan Watson (Consultant Paediatric Renal Physician from Nottingham) highlighted the psycho-social needs of people of all ages with end stage renal disease - and indeed their families. The transfer to adult units provides a stark contrast to what is available in childrens services. Our NSF Workshop on transitional care highlighted that in 2006. The key person in places where transfer works well is often the youth worker. The issues are generic and my colleague Sheila Shribman, Childrens and Maternity Tsarina has made some specific recommendations for good practice in her report "Transition: getting it right for young people". I am expecting our action learning sets from Birmingham and Great Ormond Street to identify the principles and provide pathways that will be useful up and down the country.
I was asked to do a scene setting presentation and focussed on 3 main areas - preparation and choice, capacity and patient experience (including safety). It was good to hear the progress has that has been made on vascular access - of course it is not all sorted but I am asking the Cleaner Hospitals Team, as they visit every Trust to discuss MRSA, to aks Chief Executives to fully implement the Winearls Report. It provides clear, measurable and acheivable recommendations.
There was also a discussion about "crash landers". Edwina Brown (Consultant Renal Physician, West London Renal Centre), cited the Danish approach of establishing such patients on peritoneal dialysis rather than haemodialysis which is the UK default. Jonathan Kwan (Clinical Director, St Helier Hospital), strongly advocated attendance at the formal "pre dialysis education sessions" for such patients. Home therapies, speed of transplant listing, transport of course and commissioning arrangements and pressures were all hotly debated. It was good to have commissioners in the room and I think that all appreciated Paul Jennings' (CEO of Walsall PCT and a member of my Renal Advisory Group), comments that "commissioners start from what's right for the patient and then look at how it is financed and procured". I can't quite remember who commented, but it was clearly stated from an experienced point of view, that the West Midlands must be a Nirvana. A discussion about access to the newer and more expensive phosphate binding agents ensued - so even Birmingham isn't yet perfect! The issue of supplementary prescribing by dietitians was flagged as a barrier to more efficient working and achieving better phosphate control. I will certainly be exploring supplementary prescribing further.
The first slide I showed was from the British Renal Society Patient Survey 2006 - the one that shows that less than 10% of patients get away from their base unit for more than 2 weeks every year. Bob Dunn (National Kidney Federation Advocacy Officer), made the point that the situation is worst for the eldest and poorest of our patients who are more likely to holiday in the UK than other parts of Europe. But it is not just holiday dialysis - away from base unit dialysis is needed for work, family commitments, pleasure and leisure. It is something that we must sort out
Wednesday, 11 July 2007
The sister of one of our patients so managed came to talk to me about what this bad experience feels like – I found it more than a bit uncomfortable having that particular mirror held up in front of me. The call for her sister to be admitted occurred on a Wednesday lunchtime - “no it can ' t wait, you must take the afternoon off to bring her in before 3.30pm”. Bloods were taken on the Thursday and the first dialysis was on the Saturday. That was in May and last Friday I was asked “when do you think my sister will be discharged?”.
As I prepare my slides for the opening scene setting talk at the All Party Kidney Group and National Kidney Federation Dialysis Summit at the House of Commons this Thursday, that lady and her sister’s story are at the forefront of my mind. Admitting people to start haemodialysis is hardly empowering.
By coincidence, while I was having that discussion, Jackie Buck sent me a copy of her article on “Why do patients known to renal services still undergo urgent dialysis initiation?” that was published on line by NDT on 5 July. If we take Jackie and the Leicester Group’s definition of known acute s – patients known to renal services for greater than 4 months who commence dialysis using a haemodialysis catheter or who require admission to start dialysis, I wonder what percentage of people starting replacement therapy fall into that category? A lot more than start with pre-emptive transplantation no doubt – in the East Midlands Renal Network they found that 44.9% fell into that category. It was a morning of Coincide nces , also at the same time as discussing the experiences of this particular patient, I had an offer from the NHS Heart Improvement Programme for their team to work with the kidney care team in the DH to share experiences and information from their projects that may allow us to develop some tools, support and national guidance on initiating dialysis. This could complement the capacity planning and capacity realisation that we also urgently need.
Wednesday, 4 July 2007
I met Sir Muir Gray, Chief Knowledge Officer of the NHS on Monday and he commented that reorganisation in itself never solved any problems. Hopefully the enthusiasm and energy of the new team, coupled with the high priority of the NHS in the run up to the next election will help drive the quality agenda. I will certainly be making the point that we now have 1.5M people identified on primary care registers - as it happens all voters above the age of 18 years! The variation between PCTs, SHAs and most notably practices, reflects inequality for people with kidney disease and for you and I identifies the education gap - the practices where we should be giving talks, going through examplar cases and supporting audit. Do the practices who are good at identifying CKD have lower than expected crash lander rates?
I will also be making the point that the real preventative dividend is a long way off. If we can quickly, over the next 3 years, reduce unplanned starts on dialysis and improve dialysis provision the result is likely to be a need for more not less dialysis as survival rates increase. So the aphorism that "choice spells capacity" still rings true. To offer choice to our patients we need a skilled and knowledgeable multi disciplinary workforce to explain options and their consequences, a mind set that puts people with kidney disease at the centre of the decison making, lean processes so our activities are timely - be they pre-emptive transplantation, access surgery or hospice care, and of course the haemodialysis capacity that necessarily underpins quality kidney care. These are not woolly concepts - they are measurable.
One of the key reforms that Ministers will have to grapple with is the speed of Payment by Results (PbR) rollout. You would have thought that haemodialysis, a repetitive structured process, would be ideally suited for such a reimbursement model. Despite the NHS finance rule books, each organisation seems to account and apportion in a different way. The West Midlands Renal Network looked at this process for 8 Trusts on their patch - they got 8 different answers. What is included and what is excluded is opten impossible to know - a bit like eating at a posh restaurant where the veggies may be extra or going on a package holiday without reading the small print. Of course PbR is currently payment by activity - correcting that is going to be a long term challenge. We will know we have won when the finance director asks for the quality report before the spreadsheet. Most of you will know that the DH has pushed back aspects of PbR initially due to be introduced in April 2008, including dialysis, and have recently held a consultation exercise. I asked Paul Jennings, CEO of Walsall Teaching PCT and member of the Renal Advisory Group to chair a group from the RAG and wider renal community to respond to the consultation and to make suggestions for how PbR could work for both kidney patients and services. Read our response below where you can also find details of the West Midlands costing exercise.
PbR Consultation June 2006 Appendix 1 - Renal Dialysis Cost ComparisonWest Mids - Renal Finance Group Reference Cost Comparison
John Bradley, Consultant Renal Physician at Addenbrookes Hospital is a real expert on PbR and I attach a powerpoint presentation that he gave recently at a meeting - even without notes I think it describes the situation very well.