Review finds patient “betrayal” & serious failures in UHCW brain tumour treatment

Patients and families affected by the brain tumour service at University Hospitals Coventry and Warwickshire NHS Trust (UHCW) have received significant vindication following the findings of The Royal College of Physicians’ (RCP’s) initial review into treatment provided under former consultant neuro-oncologist Professor Ian Brown and Clinical Nurse Specialist Ian Edwards. 

The independent review has identified serious concerns about patient safety, informed consent, clinical decision making and the effectiveness of the systems designed to protect patients. Its findings echo many of the concerns raised by patients and families over recent years and raise profound questions about how these practices were allowed to continue for so long.

For affected patients and families, this is not simply a story of governance failures. It’s about people who placed their trust in a specialist NHS brain tumour service and may have undergone years of treatment without being told that aspects of that treatment and care fell outside recognised standards of practice, were not supported by evidence and had not been properly scrutinised.

No examples of ‘good practice’

The RCP reviewed 20 patient cases involving individuals who received more than 12 cycles of temozolomide (TMZ) chemotherapy between 2017 and 2023. 

The findings are stark and deeply concerning for patients and families. Of the twenty cases reviewed, fifteen were judged to have been unsatisfactory overall. Four required improvements in both clinical and organisational care and one required improvement in clinical care. Not one case was identified as demonstrating good practice.

The review team found repeated examples of patients receiving prolonged chemotherapy without any clear evidence base, without adequate documentation explaining why treatment was being continued and without proper consideration of local or national guidance.

Patients may have received years of unnecessary treatment

Among the most concerning findings was evidence that some patients continued to receive chemotherapy for many years despite little evidence of benefit and in some cases, evidence of harm. 

The review describes patients receiving extraordinarily prolonged courses of treatment, including one patient who underwent more than 100 cycles of chemotherapy before it was discovered that they had a different tumour type to that originally diagnosed.

The human cost has extended far beyond the treatment itself. The review identified concerns that patients may have suffered complications associated with prolonged chemotherapy while also facing years of hospital appointments for blood tests, scans and monitoring that may never have been necessary.

Patients weren’t properly informed

A recurring theme was the absence of properly documented informed consent. The reviewers found no evidence that patients were routinely told they were receiving treatment outside of recognised standards of practice.

The review also found little evidence that patients were warned about the long-term risks of remaining on chemotherapy indefinitely. In some cases, patients may have been led to believe that stopping treatment would be harmful.

That raises a fundamental question for every affected patient and their families: how could someone make a truly informed decision about their care if they were not given clear and complete information about their diagnosis and treatment, its evidence base and its risks?

Failure of NHS oversight

Perhaps most significantly, the review concluded that the governance systems intended to oversee and challenge clinical practice were "wholly ineffective". Reviewers found that opportunities to question unusual treatment practices were repeatedly missed and that concerns raised over many years weren’t adequately addressed.

The RCP also described a "bystander effect", whereby individuals and departments failed to act because responsibility was assumed to rest elsewhere. The review found that multiple layers of scrutiny failed to identify or stop non-standard prescribing practices over a prolonged period.

Betrayal of patient trust

Many patients and families organised years of their lives around treatment that they believed was necessary to keep them alive. They attended repeated appointments, endured the side effects of chemotherapy and trusted the advice that they were given.

The review now raises the deeply troubling possibility that patients were not told that their treatment fell outside recognised standards of practice, were not informed of the long-term risks associated with continuing chemotherapy or may have been told that stopping treatment would be dangerous.

For those patients and families, the questions are intensely personal:

• Was the treatment necessary?
• Was the diagnosis correct?
• Were the risks properly explained?
• Could years of chemotherapy have been avoided?
• Why did nobody intervene sooner?

As reported by the BBC, the review concluded that the absence of honest documentation — together with the failure of expected medical oversight — amounted to a "betrayal of patient trust". For many families, that phrase encapsulates the devastating reality of what they’re now facing.

In relation to professional accountability, the review noted that Professor Brown didn’t engage with the review process and recommended that the Trust consider sharing the findings with the General Medical Council. It also raised concerns regarding the practice of former Clinical Nurse Specialist Ian Edwards and suggested that the Trust should consider whether further regulatory referral was warranted.

How many more patients could be affected?

The 20 cases examined by the RCP represent only a small part of the overall picture. The review has recommended that all living patients who received extended TMZ treatment beyond 12 cycles should be assessed. It also recognised that consideration should be given to reviewing a substantial cohort of patients who have since died.

Many patients and families may therefore still be unaware that concerns have been raised about their care. How many people received prolonged treatment under this regime and how many have not yet been contacted or given answers?

As further review work takes place, more patients and families may discover that these findings relate directly to the treatment that they or their loved ones received.

Seeking answers & accountability

Our chemotherapy negligence specialists Fiona Tinsley and Becky Addison act for a significant number of patients and families affected by concerns surrounding prolonged TMZ treatment at UHCW.

Many of our clients sought answers long before this review was commissioned. The RCP’s findings provide important independent confirmation that their concerns were justified. The question now is how these practices were allowed to continue for so long without effective challenge or intervention.

If you or a loved one received long-term temozolomide chemotherapy at UHCW, were advised to continue treatment for many years, were later informed that the diagnosis may have changed or have questions or concerns about whether the treatment was necessary and properly explained, we may be able to help.

Discovering that treatment may not have followed recognised standards can be deeply upsetting, particularly where you placed your trust in the advice that you received for many years. We can help you to understand what the review may mean to you, obtain answers and pursue accountability and where appropriate, compensation for the harm suffered.

You can get in touch with Becky and Fiona directly or call us on 0333 004 4488, send an email to medneg@brabners.com or complete our contact form and we’ll be in touch.