Kidney Cancer UK; Delivering Change for the patients

At the end of 2016, Kidney Cancer UK formed a multidisciplinary committee to look into the quality of services delivered to patients through the NHS for kidney cancer in England and Wales.  This committee is the Kidney Cancer UK Accord.

In the first few years, we struggled because we discovered there was no information about kidney cancer service quality in England and Wales.  So, no-one working in NHS kidney cancer services could answer the two simple questions: “How well are we doing? And how do we improve?”  Even more significantly, six years ago, no-one was looking.

Fast forward six years and today through deep research of data, building strong relationships with professional bodies such as key influencers in the medical profession, the Royal Colleges, and lobbying for change, Kidney Cancer UK have brought kidney cancer to the forefront of the national drive to improve cancer outcomes and service quality.

Now, Kidney Cancer UK have a patient representative on the committee developing the first ever NICE (The National Institute for Health and Care Excellence) clinical guideline on kidney cancer that will set standards for all aspects of kidney cancer services in England and Wales.  Separately, we have a committee member on the NICE treatment pathway for kidney cancer – a new process for NICE that will help health professionals decide which drugs to use, when and with which patients.  We also have two representatives on the Clinical Reference Group of the National Kidney Cancer Audit that will measure service quality, reporting several times a year with the objective of encouraging improvements at local trust level.

Beginnings

Six years ago we knew kidney cancer was the seventh most common cancer, and we knew that the UK had one of the lowest five-year survival rates in Europe.  We also knew NICE had never produced any clinical guidelines specifically on kidney cancer, despite having done so for many other cancers.

So how did we manage to get to where we are today?  Where was the big campaign?  Do you remember it?  Well, you would not be able to remember the campaign, because there wasn’t one.  Having no direct evidence on which to base any claims, it became clear to us that any campaign we tried to carry out would be based on our best guess and would be countered by NHS England’s best guess.  In other words the old “’he said, she said’” stand-off.

In addition to the survival data, Kidney Cancer UK’s annual patient survey, to which you may have contributed, showed worrying signs that not everything was as it should be.  Around half of all kidney cancer patients were diagnosed incidentally during an investigation for another unrelated condition; nearly half of tumours are diagnosed at a relatively late stage when they are more difficult to treat successfully; and so on.

The Kidney Cancer UK Accord had already produced a set of quality statements based on expert best practice which have been widely independently peer reviewed by the UK’s leading authorities on kidney cancer. But what was really needed was a clinical guideline, based on extensive data, produced by the body set up to do exactly that kind of work for the NHS – The National Institute for Health and Care Excellence (NICE).

NICE can only be directed (or ‘commissioned’) by NHS England or the Welsh Government to undertake such work, so it was up to Kidney Cancer UK to convince NHS England that kidney cancer services needed a NICE guideline.  We had to come up with a case to convince NHS England when there were no data produced by NHS England (or anyone else) on which to base our arguments.

Kidney Cancer UK had no choice: we had to produce the data ourselves with help from Kidney Cancer UK Accord.  This would lead to the largest single fundraising programme carried out by the Charity to produce what is believed to be the largest quality audit ever carried out on kidney cancer services in England, covering more than 18,500 cases over two years.

The vital evidence

The methodology for the audit was approved by what is now NHS Digital, part of NHS England. Analysis was carried out by the data analyst company Health Data Insight CIC using data provided by the National Disease Registration Service, now part of NHS England that collects data on cancer.  This major project was supervised by Professor Grant Stewart of Cambridge University, past Chair of the Kidney Cancer UK Accord, and Dr Kate Fife its current Chair and consultant oncologist at Addenbrookes Hospital.

The work took over 18 months and at the end of which in June 2022, we had the Kidney Cancer UK Quality Persormance Audit of Kidney Cancer Services in England report that demonstrated large variations in services from one part of England to another at hospital trust level. This variation is typical of situations where clinical guidelines are not working – or in our case did not exist and were urgently needed.

A report with such clear and possibly explosive results would often be published in the media with demands for action.  However, we were not trying to ‘name and shame’- we even took out all the names of NHS Trusts so that we did not know which was which.  Instead, we took the view that we should approach NHS England directly, allow them to study the findings and give them time to act on them, if they chose to do so.

Before making this approach we had shared the findings with eight royal colleges and national professional bodies with an interest in kidney cancer, all of whom supported our case, for which we remain most grateful.

NHS England took a few months to study the mass of data in depth and make the all-important decision, the one we had been working on for years, a commission to NICE through their due processes and committees.  NICE put this commission directly into their pipeline of projects being developed, so just over six months after receiving the commission, NICE was working with stakeholders, including Kidney Cancer UK, to determine the scope of the guideline.

Producing a clinical guideline of this kind is a major undertaking for NICE.  The painstaking process takes a minimum of two years to complete, often longer.  However, the results of our audit appear to have helped energise the environment in kidney cancer, and the clinical guideline is not the only initiative now underway.  Additional projects will bring benefits earlier.  NICE is separately producing a pathway document to help health professionals use medicines to treat those patients who need them as effectively as possible.  In addition, a new body – The National Cancer Audit Collaborating Centre – has been set up to carry out quality audits on six cancers, one of which is kidney cancer.  This audit will report several times per year and will show the trust names so that highlighting good performance and ensuring all are encouraged to improve where possible.  Unlike the NICE guideline, we did not have a direct role in instigating these initiatives, but through our work, Kidney Cancer UK have become involved in all of them.

Trust

The Kidney Cancer UK Accord had been costly both financially and in people hours but we knew this was going to be a long and difficult campaign.

So, was a big all guns blazing campaign necessary?

Had our approach not been successful, we would have had to consider going down this route ourselves.  Instead, we decided to rely on one simple factor: trust.  We knew we had to build trust from the bodies we were trying to influence, as well as those who became our supporters.  Part of that trust came from our expertise, as well as our commitment in producing what became the vital, and convincing evidence.  Another part came from what we did with the evidence once we had it.

From a time just a few months ago when none of these initiatives had begun, to now as we look forward to working with them all to reach their goals, this is probably the start of one of the most significant periods of improvement in services for kidney cancer we have ever seen.  Kidney Cancer UK, our Accord committee and all our partners are proud to have been at the centre of the stimulus that has led to this work, which has such huge potential to change every kidney cancer patient’s journey.

We are very grateful, and offer thanks for their hard work, to all members of:

The Kidney Cancer UK Accord Committee.

Chairs:

• Professor Grant Stewart, Professor of Surgical Oncology and Honorary Consultant Urologist, Cambridge University Hospitals
• Dr Kate Fife – Consultant Clinical Oncologist and Associate Lecturer, Cambridge University Hospitals

Members:

• James Watson – Research Nurse Cambridge University Hospitals
• Dr Paul Nathan – Consultant Medical Oncologist – Mount Vernon Hospital
• Miss Maxine Tran – Senior Lecturer in Renal Cancer and Honorary Consultant Urological Surgeon- Royal Free Hospital London
• Ekaterini Boleti – Consultant Medical Oncologist, Royal Free Hospital London
• David Cullen – Clinical Nurse Specialist, Royal Free Hospital London
• Geraldine Fox – Patient
• Terry Fox – Carer
• Mr Neil Barbor – Consultant Urological Surgeon, Frimley Hospital
• ­­­Joanne Oakley – Clinical Nurse Specialist, Frimley Hospital
• Dr Yvonne Cartwright – Consultant in Palliative Medicine at Addenbrookes Hospital, Cambridge
• Dave Ellwood – Patient
• Lucy Willingale – Kidney Cancer UK
• Susanna Smith – Kidney Cancer UK
• Carolyn Bartlett – Kidney Cancer UK
• Malcolm Packer – Kidney Cancer UK
• Andrew Greaves – Kidney Cancer UK

This audit was funded by Kidney Cancer UK

Additional funding was provided by 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

• Bristol-Myers Squibb
• EUSA
• Ipsen
• MSD

Eight royal colleges and national professional bodies

We are deeply grateful to the following organisations who supported our request to NHS England.  We circulated this report for review to the bodies listed below. We are grateful for the comments we received and have incorporated as many as possible into the document:

• The Association of Cancer Physicians
• The British Association of Urological Surgeons (BAUS)
• The British Oncology Pharmacy Society
• The National Cancer Research Institute (NCRI)
• The Royal College of Nursing Cancer and Breast Care Forum
• The Royal College of Physicians
• The Royal College of Radiologists
• The UK Oncology Nursing Society (UKONS).