We regularly work with the National Institute of Health and social Care Excellence (NICE) to add the perspective and views of kidney patients into their work. In 2011, the first ever CKD Quality Standards were produced, outlining markers of good quality for kidney care, including support for the patient’s mental as well as physical well-being, and recommending that a care planning discussion about treatment is held between the patient and doctor or nurse.
In 2017, NICE is reviewing the standards and have just put forward a proposal (external link). We're surprised to see that most of the standards have been removed and while we are all in favour of simplification we do not believe that removing the need for psycho-social support, or for a care planning discussion is the right thing to do for kidney patients.
We have made it clear that we want some of the previous standards to be retained and have worked closely with our colleagues in the Renal Association, British Renal Society, Renal Psychology Group and the renal services Clinical Reference group and they have also expressed these concerns in their responses to NICE.
We believe that people should be given information that’s appropriate for their kidney disease, and that the way in which they will be cared for should be documented and agreed with them. This standard should therefore remain. Furthermore we would like the standard recommending that “People with kidney failure have access to psychosocial support (which may include support with personal, family, financial, employment and/or social needs)” to be retained. Through our own work we fund much of this type of vital support for patients, yet NICE states that “the previous recommended quality standards are no longer considered national priorities for improvement but may still be useful at a local level”. This gives a disappointing and inaccurate message that these are not important for kidney patients. Something we know just simply isn’t true.
We will keep you updated on the outcome of the consultation.