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Kidney Cancer UK secure landmark kidney cancer NICE clinical guideline

by | Nov 18, 2022 | Kidney Cancer News | 0 comments

Kidney Cancer UK, the UK’s leading kidney cancer charity has, through its approach to NHS England, secured a commission for the National Institute for Health and Care Excellence (NICE) to produce the first ever clinical guideline for kidney cancer.

NHS England has 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 commission is the result of six-years of work and research by the charity who worked closely with experts in all aspects of kidney cancer care through their Kidney Cancer UK Accord group. This group, made up of leading kidney cancer surgeons, oncologists, clinical nurse specialists, patients and carers, commissioned an in-depth two-year service quality audit of over 18,000 kidney cancer patients, using data from NHS Digital – believed to be the largest such kidney cancer audit conducted to date.

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The results of the audit, published and presented to NHS England on June 6th 2022, indicated significant levels of unwarranted variation throughout the country that need to be tackled immediately as a priority.

It is vital that kidney cancer is diagnosed early, and treatment starts as soon as possible. The latest figures from Kidney Cancer UK’s soon to be published 2022 patient survey reveal that 30% of patients are waiting over three months from diagnosis to the commencement of treatment. This commission for the national guideline for England and Wales will have a positive impact on that 30% of patients.

Dr Kate Fife, consultant clinical oncologist at Cambridge University Hospital, Chair of the Kidney Cancer UK Accord Group, and co-author of the Kidney Cancer UK Accord audit report, said: “We are delighted NHS England have officially commissioned NICE guidelines following the approach from The Kidney Cancer UK Accord. Our audit showed that of those whose tumour stage was known, over 21% were diagnosed when tumours were generally not curable and only 25% of these patients survived for two years. If kidney cancer was diagnosed at early stages, when potentially curable, 87% of patients were alive at two years. This highlights the importance of early diagnosis.”

Professor Grant Stewart Professor of Surgical Oncology at the University of Cambridge and Consultant Urologist at Addenbrooke’s Hospital, Cambridge, and co-author of the Kidney Cancer Accord audit report, added; “The report found wide variations in both surgical and drug treatment between the twenty-one cancer alliances and even more so between different hospital trusts. For example, when stratified by cancer alliance, the proportion of patients who underwent surgical removal of the whole kidney ranged from 66% to 77% . Similarly, the proportion of patients with metastatic renal cancer who received anti-cancer drugs varied from 40% to 70%. Once in place, these long overdue NICE guidelines will impact patients throughout their journey for the better and correct these inconsistencies.”

Kidney cancer patient and member of the Kidney Cancer UK Accord group, Geraldine Fox, said: “This is wonderful news. For so long kidney cancer has been the forgotten cancer. Of the ten most common cancers in the UK, all have regularly reviewed guidelines apart from the seventh, kidney cancer, which has been totally overlooked. Speaking as a patient representative, I am grateful to NHS England for commissioning these long overdue kidney cancer guidelines which will make a dramatic difference to patients.”

Supported by eight Royal Colleges and professional bodies*, Kidney Cancer UK took its findings to NHS England with a request that it commission NICE to produce clinical guidelines to standardise treatment based on the latest clinical evidence. This has resulted in the referral made by NHS England to NICE that will start the process of guideline development.

Nick Turkentine, CEO of Kidney Cancer UK said; “This is a landmark moment for patients and a major achievement in the charity’s history. We have worked tirelessly and at considerable cost over the last six years to bring this particularly important work to fruition. We did this work so the inconsistencies in who received drug treatment at any point after diagnosis, which in our audit ranged from 40% to 70% depending on whereabouts in the country they were treated, becomes a thing of the past. An end, to the postcode lottery for patients. We want to ensure that kidney cancer patients have guidelines in place to ensure they receive swift diagnosis and the best possible chance of a return to full health following treatment.”

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

Dr Kate Fife  (Chair) Clinical Oncology Consultant, Cambridge University Hospitals Trust
Mr Neil Barber Consultant Urological Surgeon, Clinical Lead for Urology at Frimley Health NHS Foundation Trust and Director of the Frimley Renal Cancer Centre
Dr Ekaterini Boleti Consultant in Medical Oncology, The Royal Free London NHS Foundation
David Cullen Lead Specialist Nurse for Kidney Cancer, The Royal Free London NHS Foundation
Dr Yvonne Cartwright Consultant in Palliative Medicine, Cambridge University Hospitals Trust
David Ellwood Kidney cancer patient
Terry Fox Carer
Mrs Geraldine Fox Chair of the Kidney Cancer UK Patient Community Council and kidney cancer patient
Ms Joanne Oakley Kidney Cancer Nurse Specialist, Frimley Health NHS Foundation Trust
Professor Grant Stewart Professor of Surgical Oncology, University of Cambridge and Honorary Consultant Urological Surgeon, Cambridge University Hospitals Trust
Professor Maxine Tran Associate Professor in Kidney Cancer and Vice Dean for Equality, Diversity and Inclusion for the Faculty of Medical Science at University College, London
Nick Turkentine Chief Operating Officer, Kidney Cancer UK
Ms Lucy Willingale Health Professional Team Lead, Kidney Cancer UK
Malcolm Packer Head of Charity Affairs and Communications, Kidney Cancer UK
Ms Carolyn Bartlett Counsellor, Kidney Cancer UK
Andrew Greaves Policy Officer, Kidney Cancer UK
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:
<a href="" target="_self">Malcolm Packer</a>

Malcolm Packer

Malcolm is Chief Executive Officer at Kidney Cancer UK and Kidney Cancer Scotland and has worked with the charity in various capacities for over 15 years.