I hope that you are are enjoying the summer and able to take a break. The summer reminds me that the current Renal Services CRG is now more than 2 years into its term and we therefore have less than 12 months to run. It seemed timely therefore to send an update.
Data remains at the core of measuring performance and in the last few months we have received the 20th Annual report and the 2nd Annual Patient Reported Experience report from the registry and the Kidney Specific report from NHSBT. We have been working with both parties to explore a more granular centre-specific transplantation report (i.e. centres and referring units) and the preliminary findings make interesting reading which I hope will be available to all of us soon. In addition, we have worked closely with the two GIRFT leads since their team have prepared some innovative new data packs which will inform their visits over the coming months.
As a CRG we are working with NHS England Quality surveillance team to prepare for Peer review in 2019. This will involve a visit to each of the units in England to focus on the preparation for advanced kidney care including transplantation, peritoneal dialysis, haemodialysis, access provision and conservative care. The reason to concentrate of these areas is provided by the data that we already have which reflects considerable geographical variation. Together with a GIRFT visit we are aware of the possibility of “inspection fatigue” but it is important to emphasise that these visits will only last for a maximum of one day and will be constructive in spirit. The reports from these visits will hopefully be useful in future business planning and thus represent an opportunity to be exploited. Towards Autumn 2019 will be a good time to consult with the GIRFT leads and the whole renal community to reflect on which information has been both reliable and instructive. It is our hope that this appraisal will inform the revision of the renal dashboards and the re-development of the service specifications.
I am delighted that the Commissioning through Evaluation programme for rituximab in membranous nephropathy is up and running under the stewardship of Arif Khwaja, my colleague in Sheffield. This will be a prospective project/audit that will fund the treatment of 180 patients with MN to enable the efficacy of Rituximab to be evaluated. The cost of biosimilar Rituximab will be reimbursed, and centres will also receive funding for data entry to enable the efficacy of Rituximab to be evaluated. The data will be captured on RADAR who have created a special portal for the scheme. If patients aren’t registered on RADAR then they can’t qualify for funding. Data will be required 3 monthly for year 1 and 6 monthly for year 2 post rituximab. We have been informed by NHSE that, as well as drug cost, centres will also receive around £120 per visit to facilitate data entry and cover any additional costs. Once the evaluation is complete NHSE will then develop a commissioning policy with regard to Rituximab in MN. The efficacy evaluation will be done by KiTEC (Kings’ Technology Evaluation Centre) who are currently going through the process of trying to get the CTE on the research portfolio which if successful will obviously make the scheme more attractive and attract further funding. All CDs in England should now have been contacted but if you have any queries then please do contact Arif (firstname.lastname@example.org). If you have a patient that might be suitable then it would be advisable to register them on RADAR through the UKRR website.
You may be aware that NHSE have launched a new national improvement programme focussed on improving the management of clinically frail patients within specialised care pathways. The Specialised Clinical Frailty Network is a collaborative programme delivered by NHS England and NHS Elect and will start at five pilot sites in the next few months. The programme is Chaired by Richard Fluck and aims to look at how we can integrate frailty management within Renal Services. Expect to hear more from Richard over the coming months.
We are continuing to work with colleagues at NHS England and NHS Improvement to work towards a renal transplant tariff. Regretfully this work has drifted on past the retirement date of its tireless champion, Keith Rigg, Consultant Surgeon in Nottingham. I would like to take this opportunity to thank Keith for his common sense, rigour and drive and I hope that we can complete this work in the forthcoming year as a fitting legacy.
Please don’t hesitate to get back to me with any queries or any issues that you feel we should be looking at.