Kidney Cancer UK Accord Report

Kidney Cancer UK are delighted to announce that on Monday 6th June 2022, Kidney Cancer UK officially presented our Kidney Cancer UK Accord audit report to NHS England, asking them to commission the National Institute for Health and Care Excellence (NICE) to develop a NICE guideline and a quality standard for kidney cancer as a matter of priority.

On November 16th, 2022, NHS England formally commissioned NICE to produce the landmark national guidelines on the diagnosis, treatment, and care of those with kidney cancer, a first for England and Wales.

This audit report is the result of over five-years work by the Kidney Cancer UK Accord committee, which is made up of patients, carers consultants and CNS’s and follows on from The Kidney Cancer UK Accord – Consensus Statement published 2020. The report presented to NHS England includes an in-depth two-year retrospective audit of cancer services in England covering over 18,500 patients. This body of evidence far exceeds anything that has come before for kidney cancer.

This report and audit move the issue of quality standard for kidney cancer forward in such a way to make this is a landmark day for treatment of the disease which, of the top ten most common cancers, is the only cancer not to have NICE guideline.  The Kidney Cancer UK Accord are very proud of this milestone and thank all those who support us in our work in patient services we provide, funding research and helping us change the landscape for kidney cancer patients with work such as this.

This is a copy of the letter submitted to NHS England with signatories:

Date: June 6th 2022

We are writing to you to request that NHS England commission the National Institute for Health and Care Excellence (NICE) to develop a NICE guideline and a quality standard for kidney cancer, as a matter of priority.

We are aware of, and welcome, the planned audit of kidney cancer services that will be carried out by the National Cancer Audit Collaborating Centre (NCACC), and we hope to be able to contribute to that process, once it is underway.

We believe that the evidence we have compiled is sufficient to support an immediate NICE referral, so that a NICE guideline and quality standard can be developed without delay and whilst the NCACC carries out its audit.  This would mean that NICE guidance would be available at, or shortly after, the NCACC audit results were announced and would support any specific recommendations or initiatives NHS England might make at the time.

This is important because the four other cancers that will be audited by NCACC already have NICE guidance.  Implementing recommendations from their audits is likely to be more effective because they have NICE guidance.  In this situation, kidney cancer will be left behind unless it has equivalent guidance to shape service quality.

The package of work and evidence we have created up to this point is listed in this letter.  We believe it exceeds evidence that was provided to support most other NICE referrals for a guideline and quality standard.

We are aware that one of the criteria in selecting topics is the level of interest shown by academic, professional and patient bodies.  In this case we are grateful for the support of eight royal colleges and national professional bodies.

Our aim is not to criticise the NHS or any individuals working in it.  It is to ensure that people with kidney cancer have evidence-based standards of care equivalent to patients with other types of cancer, or in fact, many other diseases.  We believe this can be achieved in such a way as to support the new National Cancer Plan when it is published and to address many of the points made in the Health and Social Care Committee’s 12^th Report – Cancer Services[1] as they apply to kidney cancer.

Finally, we would like to offer our help and support in moving forward in this matter.  We have a valuable resource in the patients and carers to whom we offer care, which could feed in to a guideline development process and we have strong links with many eminent health professionals.

The attached pre-scoping document was developed through our steering committee, the Kidney Cancer UK Accord Group, with input from out Patient Community Council and the eight supporting royal colleges and professional bodies (listed below).  We hope this will stimulate the start of a scoping process in the event that you commission NICE to do this work.

For information, we have also sent a copy of these documents to the Department of Health and Social Care.

We look forward to your reply.  If you have any queries regarding this matter, please do not hesitate to contact us via Andrew Greaves, Policy Officer at Kidney Cancer UK policy@kcuk.org.uk

 

Yours sincerely

The following is a list of the evidence and resources we have developed to support this letter:

• A two-year retrospective audit of 18,640 cases of kidney cancer. This was conducted to the standards approved by Public Health England (now NHS Digital) and carried out by Health Data Insight CIC (HDI) who performed the data extraction and analysis using data from the National Disease Registration Service.  We believe it is the largest quality audit of kidney cancer services in England to-date.

Subject to the normal access criteria, these data will be shared with NHS professionals via CancerStats 2, which will include data on individual named trusts.  Trusts are pseudonymized in the reports available publicly.

• Tested Quality Performance Indicators (QPIs). The two-year audit (above)  also provides base-line data against which future quality standards could be measured and monitored.
• Guideline pre-scoping document. This document was produced with input from the eight royal colleges and professional bodies supporting our request.  As such, it represents an initial picture of what a scoping document for kidney cancer would look like, on which significant stakeholder consultation has already taken place.
• The Annual Kidney Cancer UK Patient Survey. The survey has been run every year since 2014.  The survey results provide a valuable insight into patient and carer experience of, and attitudes to, services.  A copy of the latest survey results from 432 patients or carers, published in February 2022 accompanies this letter.
• Kidney Cancer UK Accord Consensus Documents.[2] This is a set of quality statements about kidney cancer which were produced by the experts on the Kidney Cancer UK Accord. It was widely peer reviewed and first published in 2019.  A version for patients was published the following year.[3] Both are in the late stages of being updated.

Organisations that have stated their support for our proposal (listed alphabetically):

The Kidney Cancer UK Accord is a voluntary multi-disciplinary steering group made up of the following members:

[1] Cancer Services, Twelfth Report of Session 2021–22. The Health and Social Care Committee. HC551 by authority of the House of Commons. April 2022. https://committees.parliament.uk/publications/9562/documents/161967/default/

[2] Kidney Cancer Accord Consensus Statement. 2019. https://www.kcuk.org.uk/booklets/accord-consensus-statement/#page=8 (Last accessed 24-09-21)

[3] Kidney Cancer UK Accord Consensus Statement for Patients. 2019. https://www.kcuk.org.uk/wp-content/uploads/2020/02/KCA-Patient-Consensus-Statement-FINAL-including-Questions-Sept-2020.pdf (Last accessed 24-09-21)

Acknowledgements:,

Additional funding from the organisations listed below.  The audit was instigated, planned, and run by Kidney Cancer UK who retained all research data, information and editorial control throughout and with no input, influence, or consultation to or from these financial supporters: