 |
|
|
 |
 |
Patient Involvement in Commissioning Renal Services
Trevor Cook
Why do we all put in the effort to travel all the way to sunny Blackpool? Catch up on the news? A bit of gossip? There is a serious point to this … Maybe we are here because it is all about information. Getting information about our illness, the latest developments and what we as individuals need to know in order to look after ourselves. If you are going to be an ‘informed patient’ getting information is a pre-requisite and if you are going to play an active role in commissioning, planning and improving our renal service you have got to have information.
How will you know if the treatment you receive on your patch is up to scratch? What is best practice? What happens in other parts of the country? What happens in Europe? What we have found out is that there are tremendous variations in service levels even within the UK, and even within London.
My journey here really started at a workshop put on by Bob Dunn and the Kidney Alliance. What came out of that was the need for a patient guide – something other patients could use when they are working with hospitals to get their service improved. We have been working on this guide for 6 months now.
One of the paradoxes here is that there is actually quite a lot of information out there; the NSF transport advice and so on. So the poor old KPAs sit there with all this information around them but the trouble with this information is that it is rarely written in a way that a patient can understand. So let's get this put right and provide something that patients can use to judge best practice and compare this best practice across the country. For instance, we know that some waiting rooms are like living rooms and others patients have to stand up to wait for their turn to dialyse. So from issues like this to when a patient dialyses and the importance of vascular access need to be addressed using a patient guide.
Much of the available help and back-up is treatment based and patients need other types of support too; financial, psychological and how to return to work for instance. So we already have this framework in place and you can take this and plot how well your area is doing using a traffic light approach. Green for something means excellent, amber average and red is very poor.
This booklet will be available on the NKF website. We will be able to update it and you can download it. This is something produced by patients, for patients. We need your help to make it a truly excellent piece of work.
This website is intended for UK residents only.