Cancer care: providing a safe place and support during the pandemic
At a heightened time of distress and anxiety for people with cancer, Maggie’s UK centres have been vital, says its CEO Dame Laura Lee
When the national lockdown struck in March 2020, I don’t think anyone could truly have predicted the impact it would have on the lives of those with cancer.
However, while the world was talking about COVID-19, we at Maggie’s knew one thing for certain – cancer wouldn’t stop for coronavirus. And it didn’t.
Professional staff include cancer nurse specialists, psychologists and benefits advisers
Before the pandemic we were providing people with cancer, as well as their family and friends, with face-to-face support around 300,000 times a year at our 23 UK centres based in the grounds of NHS hospitals.
‘It was only a matter of days before we started to get a sense that people needed us more than ever before, we just didn’t realise how much greater that need would be’
Our centres give people a space to breathe, have time out to think and meet others in similar situations. More importantly, they are places for face-to-face time with our professional staff including cancer support specialists – most of whom come from nursing backgrounds – psychologists and benefits advisers.
But as we were thrown into the world of lockdown, shielding and restrictions we had to adapt to continue supporting people living with cancer. It was only a matter of days before we started to get a sense that people needed us more than ever before, we just didn’t realise how much greater that need would be.
We know how important face-to-face support is and realise that digital support cannot replace it. In the first month of lockdown we provided support 11,000 times over the phone, online or by email.
Heightened time of distress and anxiety for people with cancer
We were inundated with calls from people with cancer realising they might die early with COVID-19, who couldn’t say a proper goodbye to their loved ones, knowing their last days might be spent stuck at home or alone in a hospital, who were devastated that clinical trials were being halted so COVID-19 studies could be prioritised, and research came to a stop. It was clear that those coming to us for support were experiencing unprecedented levels of trauma.
Treatments have been delayed and, on many occasions, stopped. People with cancer have been dying during this period or finding that their disease has progressed. It has been a heightened time of distress and anxiety.
Our centre staff say they have never witnessed such extreme distress. They also say they have never dealt with such levels of fear and feelings of anger. As a former nurse, who was based in our west London centre throughout lockdown, I know this is true.
As well as emotional and psychological support Maggie’s helped thousands of people with their money worries
Between the start of lockdown and the end of August we had provided our high-quality individual support by phone, email, FaceTime, Skype and Zoom more than 74,000 times.
As well as emotional and psychological support we were also providing thousands of people with help with their money worries, with our benefits advisers providing more than 16,000 sessions in the same period.
We have also been there for our colleagues in the NHS, supporting 10,000 visits from NHS staff, providing psychological support, mindfulness, relaxation and a place to escape the stressful hospital environment, relax or make difficult phone calls.
‘Thousands of people are struggling to cope with cancer and the long-term impacts of coronavirus, such as fear, trauma and heightened anxiety’
As restrictions eased in the summer, our centres welcomed people back in for one on one, face-to-face sessions while following guidelines.
Now, with increased restrictions back in place across the UK, there are thousands of people struggling to cope with cancer and the long-term impacts of coronavirus, such as fear, trauma and heightened anxiety borne out of lockdown, shielding, treatment delays and potentially worse outcomes.
We expect COVID-19 to affect cancer outcomes for years to come as the huge physical, psychological and emotional consequences of delayed diagnosis and missed treatments are realised.
Maggie’s centres are often the first place that people who are shielding come to
We need to act on several levels. First, to support the NHS in encouraging people to talk to their GP about symptoms and know that care is there for them. After months of being told not to leave the house we need to make people feel safe enough to come back to hospitals. We know that word ‘safe’ is a critical one and our centres are often the first place that those shielding come to.
Second, we need to make provision for greater psychological and practical support for those newly diagnosed, so they can develop a greater capacity to self-manage. At Maggie’s we know how critical information and support around nutrition, benefits, anxiety management and treatment options are in allowing people with cancer to feel they can take back some control.
Finally, as the government has promised to invest in new NHS hospitals we would like to see these plans reflecting the developments in how the built environment can affect mental health.
Maggie’s is here on every level, with knowledge of design for well-being, why psychological support is critical for mental health around a cancer diagnosis, and why practical information can support self-management.
The need for our provision has never been greater.
