Wednesday, 27 August 2008

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.