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Message from the Renal Services Clinical Reference Group (CRG) March 17

Latest newsletter from the NHS England renal services Clinical Reference Group. As a member, the BKPA brings the views of patients to the group.

We have now held the second meeting of the Renal Services CRG and I thought it would opportune to provide some feedback and an update. Once again I would like to encourage you to get in touch if you have any issues that you would like to discuss. Please feel free to disseminate this newsletter.

Your feedback

I was delighted to receive some feedback after my previous email and I have now had a chance to discuss these issues. One pressing issue appeared to be the supply of sodium thiosulphate since the main supplier seems to have ceased production, which has resulted in a price hike. It would appear that there are a number of different suppliers and that some of the remaining companies are actually cheaper. I am grateful for further information from Smeeta Sinha in Salford, the Principal investigator for the UK calciphylaxis study (This email address is being protected from spambots. You need JavaScript enabled to view it.). We were asked specifically whether it might be possible to include sodium thiosulphate on the high cost drug list. It was felt this strategy is extremely unlikely to be successful because of the lack of a good evidence base.

I was also contacted regarding a perceived increase in physical and psychological abuse towards staff in some dialysis units. I have discussed this with a number of colleagues around the country and I did not receive feedback that this was a major problem. However if this is something that is widespread than I would be grateful for any feedback although I fear that the CRG has limited powers to intervene.

Carbapenemase Producing Enterobacteriaceae (CPE) Screening

I am aware that as clinicians we are challenged on a regular basis to determine the risk of our patients acquiring resistant bacteria and in particular that the moment, CPE. Public-health England has developed a number of toolkits and these can be accessed at the following link; https://www.gov.uk/government/publications/carbapenemase-producing-enterobacteriaceae-early-detection-management-and-control-toolkit-for-acute-trusts

To address these concerns there is currently an effort to work alongside Public Health England to produce a renal dialysis-specific set of guidelines. These should be available by the end of 2017 but in the meantime I would suggest that you discuss issues relating to CPE with either your infection prevention and control teams or public health protection teams. I would like to thank Clara Day for leading on this initiative on behalf of the CRG.

Successful Commissioning Through Evaluation (CtE) proposal

In my last newsletter I mentioned that we had submitted a CtE proposal for Rituximab in the treatment of membranous nephropathy that is refractory to conventional therapy. I am delighted to report that this bid was successful and funding has been obtained for the treatment of up to 120 cases over the next two years. At present we are appointing a clinical chair and once set up they will be open to applications according to the defined entry criteria. I will keep you informed regarding these developments. I would like to thank Will McKane and Paul Brenchley their efforts in delivering this project.

Policy for Eculizumab for the treatment of the C3 glomerulopathy

I am sure that you will be aware of the recent decision by specialised commissioning to fund eculizumab for the treatment of a relapse in C3 nephropathy following transplantation. Further details are available at the following website:

We are currently establishing a pathway whereby units will be able to apply for funding of eculizumab if inclusion criteria are met. More details will follow.


At the recent CRG meeting in Manchester we enjoyed a presentation from Dr. Richard Preece, medical director of Devo Manc. He is leading the largest and most devolved STP in the country. He made it clear that there was no plan to reorganize the whole local healthcare system. Instead he saw the role of STPs was to identify areas that would benefit from restructuring or reconfiguration. Scrutiny of STP plans reveals a variable focus on renal services with increased emphasis in London for example. One piece of advice he did give was to engage with your local STP.


There has now been a consultation period over the proposed changes in tariffs for 2017/8 and 2018/9. Like many others we made a strong representation as a CRG regarding the proposed reductions in tariff. We were particularly concerned by the proportionately greater reduction in the multi-disciplinary outpatient follow up tariff. We were disappointed, although perhaps not surprised, that there has been no shift in position. On a more positive note we do know that tariffs are calculated from the annual reference cost collection and to help clinical directors and their finance colleagues make sense of renal reference costs and future changes, there will be a joint West and East Midlands costing workshop. For maximum efficacy we suggest that it is attended by clinical directors, renal units managers, finance managers and costers - Further details will follow but I am grateful to Clara Day, Clinical Director Renal West Midlands Network and CRG member for Value, for organising this event.

Renal Registry

We have been involved in several initiatives to try and unify data collection and we are strongly supporting the UK Renal Data Collaboration led by the UK Renal registry. We are seeking to use this data to derive new renal dashboards for 2017/8. We would also like to ensure wider access to these dashboards so they can be used as a guide to performance in individual units. We will keep you informed of developments in this respect.

Quality Initiatives

We are keen to support the work of Kidney Quality Improvement Partnership (KQUIP).
This excellent initiative is co-chaired by Graham Lipkin and Louise Wells and they have established six work streams for the coming year. I would encourage you to visit the “Think Kidneys” website for further information. In a similar vein I would also recommend the Kidney Health: Delivering excellence initiative which is currently being updated for 2017. Many of you may have noticed the “Get it Right First Time” (GIRFT) Initiative which is seeking to extend a quality improvement methodology developed in orthopaedics to renal medicine. Applications have been invited for the role of Clinical Lead and we are keen to work closely with the successful candidate to prevent duplication of workload.

Value Proposal

The renal services CRG has been tasked to come up with a value proposal by the end of this month by NHS England. We have looked at a number of areas but currently favour a proposal seeking to repatriate transplant immunosuppressant prescribing from primary care, followed by a move to generic prescribing in the majority of kidney transplant recipients (but with a free hand to use other agents according to clinical need). In order to achieve this it will be essential to do a stocktake of immunosuppressive prescribing across England. I hope that you will be able to help in a brief (one page maximum) doodle poll if we proceed with this proposal in the next few weeks.

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 (This email address is being protected from spambots. You need JavaScript enabled to view it.). Alternatively contact your local representatives.

We are intending to hold the next CRG meeting in the Birmingham area towards the end of June and will be inviting local stakeholders.

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