Thursday, 15 December 2011

Renal Patient View – giving people with kidney disease information, power and responsibility

Sir David Nicholson in his foreword to the Operating Framework for the NHS in England 2012-13 draws attention to the need to get the basics right every time. The cause of short-comings in dignity and basic care are complex and deep routed, often as much to do with culture and behaviour as with resourcing and prioritisation.

The Operating Framework, work of kidney and other charities, the General Medical Council and the professional societies have a united agenda in putting patients at the centre of decision making. Information and support for patients and carers runs right through the Operating Framework. The experience of patients, service users and their carers should drive everything the NHS has to do.

“Grasping what the figures meant enables us to formulate questions for consultations, to understand explanations and in some cases, since we were first to see the figures in context, to alert consultants to changes as soon as they appeared. There is a sense that the relationship between the patient and the doctor becomes more collaborative as soon as the patient understands the figures before the consultation takes place …. Because of the service, we benefit more from consultations”.

This quote from a renal patient view (RPV) user shows the impact signing up to RPV can have. Writing directly to patients in plain English , rather than merely coping them in on a gobbledegook jargon filled letter to their GP that the GP probably will not understand , can have a similar effect and using the two approaches in combination can really transform kidney care from the 19th to the 21st century.

So it’s no wonder that I have been waiting in anticipation for the RPV statistics to see who is top of the league - not that league position is everything. But I was particularly interested in how my local Salford Royal Foundation Trust team were doing since one of our medical secretaries, Janet Cribbin, took on the task of helping people enrol when they are attending outpatient appointments. Dr Grahame Wood (consultant kidney doctor) has led from the medical side but Janet has been doing the work! Great progress - well done both of them!

Have a look if your unit has RPV available for patients and how it is doing (above). Congratulations to those units doing well and perhaps time for an early new years resolution if you are in a unit in the drop zone to use a football table analogy.

For those who are not on RPV and don’t know the detail it is freely available for every kidney unit and every kidney patient in the United Kingdom and is effectively a “my health space” for people with kidney problems . Dr Amir Hannan (a general practitioner from Tameside) cites it as one of the “jewels in the crown” in his piece “patients need access and understanding of their health records” in the Guardian online. But I will leave the last word to a RPV user -

We’ve been astonished at the difference in the patient-doctor relationship from what I remember of experiences a long time ago – a world where deference on the part of patients and distance and authority on the part of the doctors coloured the relationship, making it less effective than it should/could be. The website is a very visible statement of a wider change”.


Anonymous said...

along with EPO and Iron Infusions RPV is one of the innovations of recent times. Being someone who has had the use of RPV since its inception it has empowered me to discuss things more in appointments.
Having time to review results, with explanations of what it all means, in the comfort of your home instead of whilst on dialysis is a bonus - reading the letters sent to your GP after consultations means I can recount what they said and question anything i feel isn't right, I can also give any GP,Hospital or medical institution up and down the country access to my renal records if I should ever have the misfortune to need them.

I am now on a steering group looking to set up a similar system to allow patients/staff to annonymously report safety issues which arise from time to time whilst receiving treatment.

Anonymous said...

As a Kidney transplant patient I find the online availability of results extremely useful. I am in the situation where I am also under the care of a haemotology team, and they are amazed to see this information so easily available.
Can this system be developed for ALL patients who need access to their blood results etc.?

Dr Donal O'Donoghue said...

Yes. There is no reason why the Renal Patient View system can't be used for the benefit of other patient groups such as haematology or gastroenterology or heart disease. The RPV team have made the software an open source so really anyone in the world can emulate RPV.

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