Renal Services Clinical Reference Group Newsletter

Dear Colleagues

Let me take this opportunity to wish you a happy new year for 2018 and to share with you the work plan for the Renal Services Clinical Reference Group for the coming year.

  1. Data

In nephrology we are fortunate to have access to extremely good data sources which are the envy of other CRGs.  In the last few months we have gained access to the 19th annual report of the Renal Registry, and two reports on kidney transplantation from NHSBT (General report and Living donation).  The second part of the national CKD audit was published in December and the 2017 patient reported experience measures (PREM) survey was published by the registry. In addition, we have access to the National Commissioning Data Repository hosted by Arden and GEM.  As a CRG we are working to use this data constructively to derive dashboards, inform peer review and establish outcome measures in service specifications (see below). Analysis of the data still reveals significant variation across the country in important parameters such as live donor and pre-emptive transplant rates; initial access preparation; and home therapy take up.  We are working with all the tools at our disposal to try to improve outcomes for patients.  We are also working closely with NHSBT to try to get transplant measures reported as renal centres, not just as transplant units.  I hope this will bear fruit during 2018.

  1. Demand and Capacity

The demand on renal services continues to grow as shown on the graph below. This shows the numbers in the most recent registry report in the red box with probable current numbers in green and linearly projected numbers for 2020 in orange.

In the current climate managing this level of expansion will require innovation and shrewd business planning.  As a CRG we are keen to ensure optimal management particular at the low clearance step where patients should be able to choose the best option for them and their family whether that be home based dialysis, hospital based dialysis, pre-emptive (preferably live donor) transplantation or conservative care.  We endorse the efforts of KQUIP in working towards this goal.

  1. Access to Funding for treatments

The CRG do receive a number of requests to look at new policies for specific conditions over which we have jurisdiction.  Any clinician in the UK can apply to be clinical lead for a given policy at the following address https://specialisedservices.formstack.com/forms/untitled_form_3

For example, we were recently asked to consider Rituximab treatment for a type of glomerulonephritis in adults.  A policy is a process for a cohort of patients with a condition in contrast to an IFR which is a request for an individual.  If the CRG endorse the proposal then it goes through three phases, Clinical Build (including a thorough independent evidence review), Impact Analysis and then Decision.  Apart from the work required to make a proposal the only downside is that if the policy results in a decision not to commission it will make future funding very difficult and dependent upon IFRs for individual cases.

  1. Quality

High quality care for all patients with renal disease is a goal that we all share.  As a CRG we are trying to use the tools at our disposal to ensure this objective.  Over the next twelve months we will be working towards this objective with a number of initiatives.  Firstly, we will be publishing a Right Care casebook on Progressive Kidney disease focusing on the variation between optimal and sub-optimal pathways.  This casebook showcases both the human and financial cost of poor management.  It is targeted at commissioners to support the provision of services that promote the optimal management of progressive kidney disease.   Secondly, we are aiming to revise the service specifications for advanced kidney disease including preparation for dialysis, hospital based haemodialysis, haemodialysis at home, peritoneal dialysis, transplantation and conservative care.  We look forward to aligning these documents with the NICE guidelines on preparation for renal replacement therapy which will emerge in a preliminary form in the spring. We will be updating the renal dashboards to incorporate a number of new measures and in particular parameters where there is significant variation across the country.  We will also be seeking peer review of all renal units by the NHSE QST team specifically looking at the preparation for dialysis pathways.  Finally, we are also working closely with Graham Lipkin and Will McKane, as GIRFT leads, to ensure a cohesive approach over the next twelve months.  We continue to work with other expert groups who provide guidance such as KQUIP and the Kidney Health Partnership so that we can share ideas.  We are also keen to incorporate the emerging patient measures such as PROMS and PREMs once they become validated and accepted by the renal community.

  1. National Transplantation Tariff

Here many thanks are due to the on-going efforts of Will McKane and Keith Rigg who continue to drive this forward.  We are on course to start the shadow tariff in 17/18 with a live tariff in 18/19

  1. CtE for Membranous nephropathy

The working group chaired by Arif Kwaja are finalising the details of the scheme with technology appraisal team at King’s hospital (KiTEC).  This scheme which provides limited funding for rituximab in the treatment of membranous nephropathy will be open to all renal units in England through the panel.  We are optimistic that the scheme will become operative in the spring.

  1. Dialysis away from base

The lack of access to dialysis when travelling or on holiday continues to be problematic.  Listening to patients it rapidly becomes clear that it is a major cause of frustration.  We have established a working group to examine the issues involved and we hope to publish a new policy by the end of this year with the goal of improving access.

It is very important that we represent the views of our constituency and I would strongly encourage you to contribute to the business of the CRG.  Please feel free to contact me if you would like to share any thoughts or feel that there is an issue that we should get involved in (richard-j.baker@nhs.net).  Alternatively contact your local representatives.

We are intending to hold the next CRG meeting in the London in the spring and will be inviting local stakeholders.

Best wishes

Richard Baker

Chair Renal Services CRG