“It is not a question, therefore, of whether we can afford the NHS. Rather, we cannot afford not to have the NHS, so it is imperative that we turn the situation around.”
These are the words of Lord Ara Darzi in the opening remarks of his highly anticipated assessment of the current state of NHS England (NHSE). His report was no less damning than expected – the NHS is struggling. How did NHSE end up in this position? Darzi provides four key reasons: system mismanagement, austerity measures, a shortfall in capital investment and the Covid-19 pandemic. However, importantly, he also draws the conclusion that “despite the challenges, the NHS’s vital signs remain strong”.
Who is Lord Darzi and what is the Darzi report?
Lord Darzi is a pioneering consultant surgeon at Imperial College Hospital NHS trust and The Royal Marsden. In 2002, he was knighted for his services to surgery and medicine and is a current member of the House of Lords.
In July of this year, the new Secretary of State for Health, Wes Streeting MP commissioned Lord Darzi to investigate the performance of NHSE. His investigation looked at quality of care, access to NHS services and the overall performance of our health system. We’ve broken down the report into the key themes that will be most relevant to the brain tumour community
Although the report doesn’t include policy recommendations, Lord Darzi was commissioned to set out the themes for the government to incorporate into a future 10-year plan for reforming our NHS. The full report can be found here.
A decline in cancer care
One of the key findings within the report is that cancer care in England still lags behind other countries and cancer death rates are higher than in other countries. According to analysis there was “no progress whatsoever” in diagnosing cancer at stage I and II between 2013 and 2021.
Unfortunately, this references early diagnosis data that we do not currently have for brain tumours. This is why we have been calling for the creation of a proxy measure for non-stageable cancers so that such earlier diagnosis data can be made available for those cancer types – this includes brain tumours.
As expected, the report had a large focus on GP services. The report found that there remains a struggle to meet patient demand. Darzi also found that there is an equity of access problem to GP services with GPs being spread unevenly across the country. We know that many people affected by brain tumours visit their local GP on their journey to receiving a diagnosis and it is welcome that Lord Darzi identified expanding GP and community care services as one of the major themes for the upcoming 10-year health plan.
The report also added that the “UK has appreciably higher cancer mortality rates than other countries”. This supports the findings of the Less Survivable Cancer Taskforce, of which we are a founding member. Analysis of data that the taskforce published this year showed that out of 33 countries of comparable wealth and income levels, the UK ranks 25th for five-year survival of brain cancer
While it was not specifically related to cancer care, it’s important to share that the Darzi report found that A&E services are in an “awful state”. According to data from the National Disease Registration Service’s ‘Get Data Out’ programme, 47% of those affected by high grade brain tumours are diagnosed in an emergency setting. Therefore, it’s important that A&E services operate efficiently so that people are seen as quickly as possible.
Genomics
Genomics is the study of an organism’s DNA or genome and how that information is applied. Whole genome sequencing gives scientists the ability to have a deeper understanding of the organism they are sequencing.
This is an important innovation that helps the brain tumour community in several ways, including enabling more precise diagnoses and providing scientists with more understanding of brain tumours to help them discover new drugs.
The Darzi report specifically references the difficulties faced by the brain tumour community in accessing whole genome sequencing. Drawing on The Tessa Jowell Brain Cancer Mission’s (TJBCM) latest publication: Closing the Gap, Lord Darzi highlights that in 2023, on average, less than five per cent of eligible adult brain tumour patients were having whole genome sequencing through NHS commissioned pathways.
This must improve to ensure that everyone diagnosed with a brain tumour is able to access the potential benefits of whole genome sequencing, most notably the potential to inform different treatment options that may treat a person’s tumour more effectively.
Clinical Trials
Analysis within the report found that the number of participants within clinical trials decreased dramatically in 2021. And in 2024 the number of participants recruited to studies dropped although remained slightly above the pre-pandemic baseline.
The review notes that commercial clinical trials are the lifeblood of the life sciences industry and currently the UK ranked fourth in the number of industry clinical trials initiated in 2021 (behind the USA, China and Australia). However, Darzi added that this position is under threat as other countries increase their clinical trials capacity.
In a worrying trend, the report mentions that there are declining numbers of clinical academics practising in the NHS. Darzi notes a need to shift the research culture within the NHS. He shares that for the NHS, partnerships with the life science sector for research or treatment too often fall into the category of “important but not urgent”.
We know clinical trials represent one of the best ways to find new treatment and therapies for brain tumours. Unfortunately, we also know there are too few trials available for those affected to participate in.
This must change and is why we are calling for research into brain tumours to be made a clinical priority as part of a National Brain Tumour Strategy.
The importance of the patient voice
Lord Darzi found that in some respects, particularly in NHSE decision-making and systems, the patient voice is simply not listened to enough. He added that there are real problems in responsiveness of services to the people they are intended to serve. He also shared that as well as examples where patients and their carers had not felt listened to, there is potential for people to be more involved in designing and developing how services work.
At The Brain Tumour Charity, we place the patient’s voice at the centre of all we do and will continue to fight for their voice to be heard within the NHS as they decide on priorities and plans. A central focus for this will be the upcoming 10-year plan, where we’ll ensure that they’re listened to.
A prescription for the diagnosis
The government is now preparing for the development of a 10-year health plan to address the challenges that Lord Darzi has outlined in his review. It’s vital that the government recognises the challenges faced by people affected by neurological conditions and cancers.
However, the challenges facing people affected by brain tumours are complex and unlikely to be solved in a broader plan. This is why we’re committed to our call for a National Brain Tumour Strategy focusing on the areas of diagnosis, care, treatment and research – four areas that are key to improving outcomes for people affected by this devastating disease.
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