In Brain News, Charity News

A golden opportunity or a burning platform?

This is our understanding of cancer treatment during Covid, based on conversations with our community, and the data available. How do your experiences of cancer treatment during Covid compare? Let us know, and if you have any questions, get in touch (hello@brainstrust.org.uk)

These two phrases, “golden opportunity” and “burning platform,” describe two different approaches to telling the same story. The first describes the incredible potential that the NHS can realise by transforming itself to meet growing demand during the Covid-19 pandemic, so that change for good can be a lasting legacy. The second phrase refers to the challenges that this pandemic has wrought and a potential downward spiral that can only be arrested if the NHS transforms itself to correct the problems. Both stories are true, and both are intended to create the same outcome: supporting a painful and difficult transformation. Yet they can create very different impressions, impressions that the media is all too quick to report. There is always more than one version of the truth. The bottom line is that across all cancer services, 85% of treatments were delivered. Given the pressure on the NHS during this pandemic we think that’s a pretty good outcome.

So what has the impact of Covid-19 been on people living with a brain tumour? We have been monitoring the situation continually. We know there was a period of just two weeks at the height of the pandemic when the numbers of people with a newly diagnosed glioblastoma, the most lethal form of brain tumour, were not presenting at clinics in some key hospitals. And yet in others it has been business as usual.

Did your treatment plan change, or continue as planned over the last five months?

What does the data say?

The latest data release[1] shows that under the two week wait (2ww), on average over the three months of April to June, 95% of people diagnosed with a brain tumour were seen within the recommended 2ww guideline. This rises to 97.9% of patients being seen with three weeks. 18 units (75%) provided information from 80 MDT meetings that discussed 1221 patients at the height of the pandemic. 10.7% of patients had their management changed. There was marked variation across the UK (0%–28% change in management). Units that did not change management could maintain capacity with dedicated oncology lists[2].

And for people receiving treatment within 31 days of diagnosis? Unfortunately, we don’t have the brain cancer data, only data for the common cancers; brain is included in other cancers. ‘Other’ cancers have held up well throughout with on average 96% of first treatments being delivered within the national recommended guideline of 31 days post diagnosis. It is hard to comment more without specific data on brain cancer but this is not available. If you are one of these people – please share your experiences with us.

Consultants have said that urgent cases (so people with malignant brain tumours and those with brain metastases) continued to be treated according to standard policies throughout the Covid-19 timeframe, and brain cancer surgery continued to be delivered in most centres. At the peak, in April, it was necessary to stop surgery for some non-urgent cases in a few, but not all, centres. Where surgery was stopped centres worked with other providers such as for stereotactic radiosurgery, but concern was raised about patients moving around England during lockdown, when it would have been safer to delay the treatment until the risks had reduced. So risk versus benefit.

Golden opportunities

Firstly, there has been an unwavering dedication from our brain cancer clinical community, whom we know have gone above and beyond to be there for our brain tumour community. We’d also like to shout a massive thank you too to everyone who is living with a brain tumour for understanding risk versus benefit. You got that sometimes it was better for your chemotherapy or surgery to be delayed by just a few weeks as this was safer than the risk of catching Covid-19. This has led to more engaged conversations with your clinical team, about your appetite for risk, your context and what’s important to you.

What else? Well, the agile approach to virtual health and care has been a golden opportunity. This has been long overdue and what was thought would take years to achieve was done overnight. We know that during Covid-19 about 85% of consultations were done by telephone, compared to about 14% previously; this will self-regulate over time and will probably reduce.  What we need to focus on next is how can remote consultations be optimised so that you get the most of your appointments. Do you have any tips on how to get the best out of a remote appointment?

The way hospitals reorganised themselves to provide Covid-19 free environments so that treatments could continue has been a golden opportunity. Innovative approaches such home treatments, using mobile units, having ‘dirty’ scanners where Covid-19 patients scanned and clean scanners for non Covid-19 patients, have been established. Did you begin having treatment at home during Covid? How did you find it?

Collaborations have grown that would never have been on the agenda before. The Programme Director for the NHS Cancer, the National Clinical Director for Cancer and the National Cancer Director have all made time in their diaries every week to update us and in so doing have truly valued the supportive work which charities such as brainstrust deliver.

A burning platform?

We know that screening for some of the common cancers, such as bowel and breast were put on hold and that this is a burning platform.  As too is clinical research, not just for brain cancer but for all cancers. Research charities have lost impetus for funding as trials were closed and those in set up, halted. Whilst things are restarting this burning platform will continue for months, if not years, to come.

One of the most impactful stressors for our community has been for those people who have a life limiting diagnosis, and then have been unable to do the things that matter to most to them. We know how important it is to have your best possible day and that having a good quality of life can extend your prognosis. This is a bitter pill to swallow when you can’t see your grandchildren, or you can’t sit and hold the hand of your loved one as they are in hospital. How did you cope during this period of increased isolation?

We may feel better believing there is one single truth, and thinking everyone who doesn’t see things the way we do simply doesn’t have the truth. That’s not true. Everyone has a lens on the situation that’s distorted by what they want, how they see the world, and their biases. This is never more so when you are living with a brain tumour. The one truth we have learnt from this pandemic is that there are multiple truths and that these come in many forms. Our job has been to share some of these.

 

 

[1] https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/monthly-prov-cwt/2020-21-monthly-provider-cancer-waiting-times-statistics/provider-based-cancer-waiting-times-for-may-2020-provisional/

[2] Price SJ, Joannides A, Plaha P On behalf of the COVID-CNSMDT study group, et al

Impact of COVID-19 pandemic on surgical neuro-oncology multi-disciplinary team decision making: a national survey (COVID-CNSMDT Study)

BMJ Open 2020;10:e040898. doi: 10.1136/bmjopen-2020-040898