Research labs were closed, thousands of men had their treatments delayed, and much of our activity ground to a halt, but prostate cancer didn’t, so neither did we.
We’ve listened to men and clinicians across the UK to learn about the huge disruption Covid-19 has had on NHS care. We know that in some parts of the country diagnosis and treatment of prostate cancer simply stopped, creating a lot of anxiety for men and their loved ones.
Our survey showed delays to scheduled NHS treatment, tests and surgeries were the most common concerns. That’s why, throughout the pandemic, we’ve been working closely with the NHS to support clinicians and advocate for what men need from national decision-makers. Here’s how:
Chemotherapy treatment was stopped for men who are newly diagnosed with advanced prostate cancer because its effect on the immune system increases men’s risk of Covid-19. This was devastating, and we immediately asked NHS England to make the latest hormone therapies available. Abiraterone and another hormone treatment, enzalutamide, have the same survival benefit as chemotherapy, but not the same impact on the immune system. They can also be taken safely at home, reducing trips to the hospital.
This was a big ask. These treatments are not yet in use on the NHS in England or Wales (unlike in Scotland, where abiraterone has been approved). We were very pleased that NHS England answered our call and made enzalutamide available in place of chemotherapy for these men during this crisis. Men who cannot tolerate enzalutamide are able to have abiraterone. Working closely with doctors, we also made sure that alternative treatments to chemotherapy were available in Wales and Northern Ireland too. Men in these nations can have abiraterone. Men continue to be able to receive abiraterone in Scotland too.
Update, 3 August 2020: Today NHS England announced the good news that ‘Covid-friendly’ cancer treatments that are safer than chemotherapy for patients during the pandemic, will be now be extended through a £160 million initiative. Thanks to the work that you fund, thousands of men can continue to have treatment that's effective, and much safer, from the comfort of their homes.
We brought together multi-disciplinary teams of health professionals across the UK to learn from each other, share methods and plan to rebuild NHS services once the coronavirus crisis has eased. In the coming weeks we are hosting virtual meetings of Cancer Alliances and Health Boards across the UK to identify their challenges in getting care back on track, for example helping men who are stuck on waiting lists for treatment. As they focus on addressing these treatment backlogs, we are helping them to prioritise men at higher risk of harm from their prostate cancer while balancing with the risk of Covid19.
The risk of Covid-19 has meant many men have not had conversations with their GP about their prostate cancer risk. We’re concerned that this could mean many men have their prostate cancer diagnosed too late. The pandemic has also led to some men not attending appointments in hospital. That’s why we’ve worked with the Primary Care Urology Society to produce information to support GPs to take action. We’re also supporting work to make testing and diagnosis as safe as possible in the pandemic e.g. through the greater use of one-stop diagnosis clinics that minimise visits to hospital.
We’re helping men understand the risk posed to them by their stage of cancer, so that they can make an informed choice about the risk of their cancer harming them (for some men with slow-growing, low-risk cancer, it’s possible their cancer will never harm them) and their risk of contracting Covid-19.
Our Specialist Nurses spoke to many men who had problems getting access to PSA tests that monitor their prostate cancer. Other men receiving long-term hormone therapy were struggling to access the injections they needed. GPs were limiting these services to balance men’s risk of contracting Covid-19 with their risk of prostate cancer progression. We contacted thousands of GPs to stress the importance of these services for men and suggested they empower men to make an informed choice about whether to have a PSA test or a hormone therapy injection, after explaining the risks of Covid-19. We also shared this advice in several primary care journal articles.
The pandemic has led to increased use of telephone or video consultations in place of face to face meetings. Delivering health news without seeing patients face-to-face can be difficult, but our Specialist Nurses are experts at discussing healthcare issues over the phone. We wanted to support clinicians new to this approach so we created a unique guide for health professionals to improve how they support men remotely.
Men getting test results without coming into hospital can be a really good thing – we’ve been fighting for this, as our research shows it can improve their experience with quicker and easier access to results. However, we’re concerned that the rushed implementation of this way of working during the pandemic may mean that key elements that ensure patients are safely followed up are missed. We’re working with hospitals across the UK to ensure that they’re setting up safe and helpful follow-up care systems for the long-term.
Many of the issues facing men with prostate cancer are common across all cancers, and by working together with all the cancer charities through One Cancer Voice we can shout louder about things like the importance of safe spaces that are sheltered from the virus where men can receive cancer care.
We understand the urgent importance of access to treatments and tests and will continue to advocate for you in this fast-changing environment. Through it all, the specialist nurses at Prostate Cancer UK will continue to provide support and information when you need it.
Men, we are with you.
If you have questions or concerns about prostate cancer you can contact our Specialist Nurses.