NICE, The Elements and a new term

3 min read

This is the first full week in the office for me for over 18 months and it is good to be back.

The first deadline of the week was to submit our NICE brain tumour consultation input. The role of the National Institute for Health and Care Excellence (NICE) is to improve outcomes for people using the NHS and other public health and social care services. One of the ways they do this is by developing quality standards and performance metrics for those providing and commissioning health, public health and social care services. Monday was the deadline for stakeholders to input into NICE quality standards on brain tumours (primary) and brain metastases. The quality standard covers diagnosing, monitoring and managing any type of primary brain tumour or brain metastases in people aged 16 or over. It describes high-quality care in priority areas for improvement. These areas include imaging, late effects of treatment and access to rehabilitation.

As a stakeholder, Brain Tumour Research is happy to act as a critical friend for NICE and believes that the areas as selected by the quality standard represent important areas that relate to the delivery of care to brain tumour patients and their families and carers. However, we are also clear on the need to set standards that are possible to deliver whilst at the same time providing a useful quality index of service delivery for those involved in delivering the service. It is that clarity that has formed both the basis and the content of our submission.

We welcome the standards and we inputted our concerns about how the quality standards will be implemented and assessed in a collaborative spirit. We hope that those tasked with delivering them will find our focus on these key areas helpful.

The expected date for publication is 7th December 2021.

In my last blog, a fortnight ago, I wrote about music, theatre and literature being ways that we can raise awareness and, through working differently and exploring new avenues, we are reaching new people. I mentioned that we were planning an interview with the author of a new book on grief and widowhood describing the year following her husband’s death from his brain tumour. Now Kat Lister’s extraordinary book, The Elements – A Widowhood has been published.

Before it overcame him in 2018, writer and journalist Pat Long attacked his illness with a forensic almost professional curiosity. I met Pat when he visited our  Centre of Excellence at Queen Mary University of London (QMUL). Pat wanted to meet and talk with Professor Silvia Marino, whose life’s work has been researching the tumour type that was slowly, and then terrifyingly quickly, taking Pat away from his wife and soul mate.

I spoke with Kat last week and she said: “Speaking about the viscerality of grief shouldn’t feel like a radical act just because I am younger than most. Although my story is an unconventional narrative, its function here is to say something universal about loss, love, identity and evolution. Themes every reader, regardless of experience, can relate to.”

This book glides between academic research to the guttural howls of bereavement visiting both the exotic and the mundane and as such is like no other, I have read.

We have published a longer form blog based on my conversation with Kat and you can access that, and details on where you can purchase the book here.

There has been a very interesting, and relevant story, unfolding in Australia recently where following an emergency meeting of the Medical Council of New South Wales, neurosurgeon Charles Teo will face restrictions on the types of operations he can carry out.

Mr Teo’s services have been in high demand, with desperate families raising large amounts of money through crowdfunding to pay for operations that other surgeons have deemed too risky.

However, Mr Teo's practices and the fees he charges patients have caused unease among fellow surgeons although he has defended his prices, blaming “excessive” costs in the Australian private health system.

Under the new conditions, Dr Teo will be required to get written approval from another neurosurgeon approved by the Medical Council before conducting certain types of procedures on patients with brain tumours. In a statement, a Medical Council of NSW spokesperson said Dr Teo would also be required to show that he had explained the risks associated with the procedure to his patient and obtained informed financial consent.

In a statement, Dr Teo said he accepted the NSW Medical Council's rulings. He said: “I feel extremely privileged to have helped more than 11,000 patients both here and overseas over the last 35 years in their journeys with all types of brain tumours.”

“At all times, my overarching priority is their health, while offering them hope and respect.”

“I am often approached by patients suffering from brain cancer who have been told that there is nothing else to be done. Published manuscripts over the last 30 years show that my success rate with these so-called 'inoperable' tumours has been very successful in curing 'incurable' tumours, extending survival or improving quality of their lives.”

We asked Emeritus Professor of Neurosurgery, and Chair of our Brain Tumour Research Scientific and Medical Advisory Board (SMAB), Garth Cruickshank for his thoughts on Mr Teo’s case. He said:

“Very few UK neurosurgeons conduct brain tumour surgery privately. This is because they need the back up of an intensive care unit and there are not many of these in the private sector in the UK. Some NHS departments support private work but the conflict with NHS patient flows puts most surgeons off doing this. I note that Mr Teo is now required to have his patients’ cases reviewed by the equivalent of a Multi-Disciplinary Team (MDT) meeting prior to surgery and this would form a basic safeguard for patients and, of course, advice from a conventional MDT might be that surgery is too risky.”

Accessing treatments overseas is a matter of huge interest to our community. It can offer hope, a new treatment pathway, a surgical intervention and opportunities to receive emerging therapeutics – options often not currently being offered by the NHS. This can come at a significant cost, which is frequently funded by patients, patients’ families and their fundraising friends. Parliamentarians will focus on the reason why some brain tumour patients seek treatment abroad as part of the forthcoming inquiry by the APPGBT – ‘Pathway to a Cure – breaking down the barriers’.

What else has been going on? Well we have seen a huge number of additions to our campaigning database in the past fortnight (welcome aboard) with many of the recent signups living in constituencies that we previously haven’t had a presence in. Plenty of new Parliamentarians to target and to get engaged with our work.  I’ve been doing quite a few radio appearances too supporting our wonderful fundraisers and although it is great for me to have this opportunity to share more widely about our work there is no doubt you all do a superb job when given the chance to explain why you are our supporters. Thank you and well done! 

Sue and I met with a new MP to Brain Tumour Research last week. He is keen to be a member of the APPG and to table Parliamentary questions because not only has he been contacted by a constituent (who is also a campaigner), but because he was close to the premature loss suffered by friends at the hands of this disease.

We are also taking the first steps to reinstating our lab tours. A crucial part of our research portfolio lab tours are a fantastic opportunity for supporters with a keen interest in the research we fund to hear latest ground-breaking updates from our expert world-class scientists.

Lab tours are usually a mix of presentations about the research, followed by a walk through the facilities, where our scientists introduce various aspects of their work and how they are looking at ways to fight brain tumours.

Visitors are able to ask questions about the research and understand how the work being undertaken is getting us closer to a cure. Our lab tours are popular and it's inspiring to see how people leave with so much new knowledge and passion to redouble their fundraising efforts. Our scientists find these tours motivational too as they hear the stories behind the fundraising endeavours that support their work and they frequently comment on the scientific knowledge of the visitors and the sophistication of their questioning.

Details on forthcoming lab tour and research centre events will be posted on our website.

So, in some ways it has been business as usual this week because our focus and drive has not, and will not, change but it also feels like a new term and with that comes energy, optimism and ambition.

It is great to have all of you alongside us for the next steps in our journey to a cure.

Finally as we come to the end of Remember A Charity Week I would like to thank those of you who are considering or have left a legacy in your will and to ask if you can let me know, if we don’t know already, if that is your intention, so that we can make sure we include you in updates to our legacy pledgers.

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