Wednesday, 27 August 2008

Q & A: Criteria for place of maintenance haemodialysis

Q I wonder if you could help me? I have received a query from one of the Renal Centres as to whether there are criteria on deciding if patients are suitable for dialysing in a Centre or a Satellite unit. We do not seem to have one – do you know anyone who does? Nesta Hawker, Specialised Commissioning Manager, NW SCG

A Dear Nesta, thanks for your enquiry. I think the principles are probably applicable across units and commissioning areas but the specific criteria may well depend upon local factors and to be workable I think the criteria need to be owned by the local renal communities – within that group I obviously include renal commissioners and renal patient groups.

Patient safety is paramount and convenience for the individual undergoing dialysis (and their family members/carers – in some instances) are important considerations. For the majority of patients for most of the time this should mean dialysis in the facility closest in travelling time to their home.

Over the past 15 years I have seen a change from the philosophy that only fit and healthy patients can be dialysed in a satellite unit, but those with co-morbidities need to be brought into the centre where there is easier access to medical or more intensive nursing support, to a realisation that bringing sick people long distances actually increases their dependence and can reduce their quality of life such that many units would now expect that all patients are dialysed in the unit closest to their home. To quote Donal Rumsfeld “stuff occurs” such that around 15% of patients at any one time need to be managed in the central unit – because they are admitted and need dialysis from the ward, because they are attending other departments only available at the inpatient centre or because of access problems.

One aspect of a quality service that I would like to see debated in more detail and potentially measured as a marker of quality is starting dialysis as an outpatient via an AV fistula – we used to consider that the first dialysis should occur in a central unit but am not sure why it couldn’t be planned to start in a satellite unit with appropriate staff and facilities on hand. Haemodialysis is a “much gentler” procedure now that it is bicarbonate based and the flows can be regulated to individuals’ tolerance such that even severe cardiac disease should be able to be managed in both satellite and central units.

I have heard people argue that only those with uncontrolled psychiatric illness or the rare patients with a severe personality disorder need to be routinely managed in a central unit.

Nesta, I know you will be raising this at the North West Renal Strategy Groups and the Specialised Commissioning Forum in September. I will be interested to learn the views of others and will return to this issue in the blog after these events.

Kidney Care – what you told us

Kidney Care is a new NHS organisation that has been established to help deliver the goals of the NSF for Renal Services. I am sure I don’t need to remind readers of this blog that our NSF covers adults and children and aims to improve the experience and outcomes for all people at all stages of kidney disease.

The NSF has set a high bar in a number of key areas – targeted screening of those at risk of CKD, information in care plans for all those with kidney disease, systematic management, multiprofessional preparation for renal replacement therapy, pre-emptive transplantation where possible, improved vascular access, improved transplant services, choice of modality of dialysis provided round the needs of the individual and full supportive and palliative care for those who choose the “no dialysis” option.

In the last few years we have made progress in all these areas. Primary care is now aware of kidney disease. A lot of attention has been focussed on the year before “RRT” including improving vascular access and reducing healthcare associated infection. “Organs for Transplantation”, has been published and all 14 of its recommendations have been accepted. We hope to increase donation after death kidney transplantation by over 50% in the next 5 years. Investment plans for dialysis have been drawn up in most localities.

Good solid process, thanks in no small part to each and every member of the wider kidney community. Kidney Care NHS has been formed to help you go further and go faster to improve individuals’ experiences and where possible, outcomes of kidney disease. Kidney Care is an improvement team with a difference – it has been shaped by the views and opinions of the kidney community. Over the past 8 weeks many of you had the opportunity to comment on what is needed, what should be done nationally, what can only succeed locally and how kidney care should link with your team, your networks, how kidney care can help you deliver or receive an even better service. In that time, not a day has gone by without views being expressed – in meetings, on the phone, by email. All the major kidney care organisations, all types of professional staff and, most importantly, individual patients and carers have contributed to this listening exercise.

So what did you tell us? That there is a lot of good practice and lots of examples have been provided, that we shouldn’t reinvent the wheel, that some things are better done nationally rather than fragmented and that to really change experience and improve outcomes needs local engagement of all the partners providing care. The structure, priorities and the culture of kidney care will be true to these big ideas and ideals.

I see Kidney Care as the oil that lubricates the system of care that is the NHS, that helps the clinicians and institutions respond to the needs of individual patients, that supports transformational change. It will not bring another layer of beaurocracy, it will not involve new central targets, it will not try and fix what isn’t broken to fit with some new policy idea. It is there to work with clinical staff, commissioners and regulators and to respond to service users’ needs.

You have told us that knowledge management – I prefer to call it sharing best practice and improving the evidence base – for kidney care, information and informatics and communication are national functions. That we should use the new technology where possible to support the kidney community.

Over the past year I have seen many examples of excellence, visited practices at units where aspects of kidney care have reached the next level and have been humbled by what teams, sometimes with minimal resources, have achieved in partnership with patients and carers. At times I think the new skills I am acquiring would be very useful in setting up a “dating agency” – or as the blurb says “it always gives me a warm feeling when I can put 2 teams or individuals together and see them solve patient related problems together”. I am concerned that needs to be put on a more systematic and robust footing and therefore will be establishing a Kidney Care Knowledge Management Board to advise on identifying, quality assuring and signposting good practice. Part of that Board’s role will also be to spot the gaps in the evidence base, advice on how these gaps are to be plugged and to help develop and promote tools to speed and improve uptake of projects and ideas that have proved successful in other settings.

The health service is good at collecting data, the problem is it is often wrong – failure to record or poor coding can give some very strange looking results. In the kidney community we are very fortunate to have the Renal Registry which provides a source of high quality information about patients once they have started renal replacement therapy. The Registry staff then spend a lot of time working with units to ensure that data is as good as it can be. Often however the outcomes on dialysis are directly related to the management in the months or years prior to the initiation of replacement therapy. I am therefore very pleased that our recently commissioned national audit of vascular access examined care prior to as well as on dialysis. There is a need to turn the data that is collected across the whole pathway from risk on early kidney disease through to replacement therapy or supportive palliative care into relevant information. We need to derive quality metrics for each part of the pathway if we are to use the information to understand where we need to take action to improve safety, experience and outcomes. Better information and better informatics - the linking of the data will help generate better knowledge and “knowledge is the enemy of disease”.

Delivering best practice means ensuring the right people use the right information at the right time. Getting information and turning it into knowledge is one of the key skills of clinical and care teams. But where to start – the library, the internet, the journals, conferences – today’s problem is too much information! In a way, it is easier for specialist practitioners – having to know only about kidney disease does seem easier that having to know about all health issues that our colleagues in primary care must grapple with. I would argue it is not necessarily easier but different and we all are at risk of information overload. So our communications strategy from Kidney Care will try and link with the learning opportunities that already exist for renal healthcare professionals and all the many others involved in providing care for people with kidney disease. People learning different ways – we must try and tailor continuous professional development to these differences.

Thursday, 21 August 2008

bedtime reading: Implementing a National Vascular Risk Assessment Programme - Final Report of the APPG

This report from the Joint APPG on vascular checks provides an update on the work to intruduce vascualar checking, including checks for kidney disease, for people aged 40 to 74 from 1st of april 2009. It gives a flavour of the views from the different clinical communities - Kidney care, Heart Disease, Stroke and Diabetes .

Monday, 4 August 2008

Q & A: Nocturnal dialysis

Published in Kidney Life, August 2008

Q: Dear Dr O’Donoghue, I would like to ask what you think about Nocturnal Dialysis and how it could be offered more freely to those patients already on Home Haemodialysis (HHD)? I understand there are tremendous benefits to be had from long, slow dialysis overnight which is gentler on the heart and clears more toxins from the body, enabling some patients to come off various medications, resulting in a much better quality of life.
It would be interesting to know what machines are used for this type of dialysis, and how the costs stack up against the usual type of HHD, so that I, and other patients in my situation, can discuss this more fully and knowledgeably with our consultant. Marion Higgins, HHD patient.

A: “Dialysing 6 nights a week for 8 hours each time has made an amazing difference to my health. The toxins in my blood are really low, I’m taking no medication, my blood pressure is normal and my haemoglobin levels have stabilised without injections.” This quote is from Patrick Pearson-Miles who manages his haemodialysis at home with the support of the Guys & St Thomas’ Hospital Team. Patrick’s elegant words convey the impact that nocturnal dialysis can have, in suitable individuals, much more powerfully than I could do. At a push I could explain the physics of why frequent, that is more than 5 times per week, sometimes called daily or quotidian (Latin for daily) dialysis, even for short periods of time – such as 2 hours per session – is more efficient at removing some waste products than conventional 3 times a week haemodialysis. Other impurities and toxins such as phosphate respond better to longer – overnight, called nocturnal dialysis. Frequent, long dialysis combines the best of both approaches but what you probably want to know is how that can affect the experience of being on dialysis. So, over to Patrick again “I’ve eaten mushrooms have had home-made banana milk-shakes and even celebrated with my first pint in 12 years, all of which would have been unthinkable under the old system”. Nocturnal home haemodialysis therapy has been around since the 1960s when it used to be the usual way of delivering long, slow dialysis. In the 1960s and 1970s many patients dialysed overnight three nights per week. They felt well. Survival rates in Tassan, France which has reported most extensively on this model of dialysis, were among the best in the world. Although home and night time dialysis have declined since 1980, due to the growth of hospital and satellite based dialysis, there has been a renewed interest in the therapy in recent times as frequent nocturnal haemodialysis has a substantial impact on survival and quality of life in patients on dialysis.The therapy can be performed safely at home at night allowing long hours and/or frequent dialysis. The dialysis itself is performed with essentially the same equipment as other home haemodialysis patients use.

The main differences from standard haemodialysis are in the lines used, which have to be longer than normal lines to allow for movement whilst asleep and more secure attachment of the lines with a blood leakage alarm as a safety feature. Typically it is performed with slower blood and dialysis flow rates, which provide clearances far in excess of any other dialysis modality. Most patients choose to dialyse for as long as they sleep at night. The dialysis schedule can be tailored to an individual’s need taking into consideration diet, sleep patterns and biochemistry. The longer hours provide excellent biochemical control, including phosphate and blood pressure. People can stay on a more liberal diet and fluid intake, and usually do not require phosphate binders or blood pressure medications. Some patients may even drop their phosphate levels too low requiring additional phosphate supplementation in the dialysis fluid, although this can also be managed by increased phosphate intake in the diet.

Now, not everyone is suitable for home haemodialysis, but if you are you are entitled to receive dialysis customised around your individual needs. The National Service Framework for Renal Services guarantees that ‘renal services are to ensure the delivery of high quality clinically appropriate forms of dialysis which are designed around individual needs and preferences and are available to patients of all ages throughout their lives’ (standard 4) and goes on to state that ‘all dialysis methods should be available interchangeably for patients including home haemodialysis’.

If you are reading this and thinking that home dialysis or nocturnal haemodialysis is something you might want to consider (and why not?), I would recommend Googling nocturnal haemodialysis and looking at and looking at the "am I suited to nocturnal haemodialysis?" section. It is well written and identifies 4 key factors to determine your suitability for nocturnal home haemodialysis:
  • you must want to take control of your care
  • you must be physically capable of self care
  • you must be mentally able to learn to run your own machine
  • you must be emotionally stable and able to make decision.
People who take an interest in and control of their care get much better outcomes than those who don’t. The subjective experience of living on dialysis is not only much better for people on daily dialysis but the outcomes are also much better – survival is longer and hospitalisation is less. In many studies, the cost of daily dialysis when hospitalisation and drug costs are counted is reported to be lower than conventional haemodialysis. There are some practical issues related to increased use of heparin and larger bicarbonate bags and it is important to get these right to avoid triggering alarms and disrupting sleep. A noisy reverse osmosis unit can be a potential barrier but can be overcome by choice of reverse osmosis system and its location. Dialysis away from home may have to be a conventional treatment as not many holiday units will provide such long hours of dialysis. Most patients tend to cope well on shorter hours for a brief period without significant problems.

In recognition that home haemodialysis is often but not always prescribed as a 5 or greater times per week therapy, I have recently recommended to the NHS financial teams that this should be reflected in the average costs. Water and electricity costs are reimbursed by the renal unit as appropriate for the length of the treatment pro rata. There are no additional significant setup or maintenance costs for performing the home dialysistreatment at night but the renal unit will have to provide a helpline and out of hours technical support in the event of any problems.

Nocturnal haemodialysis can have a great impact on independence & quality of life with superior outcomes and should be encouraged in all patients on home dialysis. If you wish to consider this therapy as an option, discuss it with your dialysis nurse and seek advice from your own consultant. You could also talk to several other patients or experts in the UK who are currently practise nocturnal haemodialysis either through the Kidney PatientAssociation or by directly contacting myself so I can put you in contact with such teams and patients.
Finally, let me leave the last word to Patrick: “the biggest plus is I now have 7 free days. Before, four days a week involved dialysis, which really affected my life and ability to work”.