'Covid-19 has not gone away' say terminally ill

People with a terminal illness say the world may have moved on from Covid-19 but they still can’t because they fear dying earlier from Covid and face ridicule when they try wearing a mask.

The experiences of terminally ill people in the West Midlands has been captured in a new film based on research by the University of Warwick and end-of-life charity, Marie Curie.

Shouted at for mask wearing: ‘Your problem not mine!’

The film shows people with a terminal illness are struggling to balance the desire to live fulfilling lives with the time they have left and ensuring they stay protected from catching Covid-19.

This includes Wendy who has stage four lung cancer and says in the film: “COVID has not gone anyway, it is a really difficult situation for people like me who are extremely clinically vulnerable.

“When you are out in public you are nervous and worried about the people around you. I want to go out. You have to go out. I get in there as quick as I can and get out as quick as I can.”

Pauline, who also has stage four lung cancer, said: “I was shouted at in a supermarket for wearing a mask.

“This man said, ‘take your mask off as Covid is over.’ I tried to explain that I have to wear a mask still as I have stage four lung cancer, but he said, ‘that's your problem, not mine!’”

The research based on evidence from people living with terminal illnesses and their care workers as described in four reports making recommendations for hospices. Marie Curie has responded to the research by urging people with terminal illness who are worried about Covid-19 to contact their information and support team who can provide practical and emotional support.

‘Painful to read’

John MacArtney, Associate Professor and sociologist of dying and palliative care at University of Warwick, said: “For many, the Covid-19 pandemic feels like a thing of the past. But as we come to the end of 2022, Covid-19 is still having a significant impact on people with terminal illnesses and the quality of the life they have.

“Many people with terminal illness are immunocompromised, meaning that vaccines and booster jabs are often less effective for them.

“Sadly, the exceptional needs of terminally ill patients and palliative services remain unaddressed with current Covid-19 public health and protection policies.”

Sue Morgan, associate director at Marie Curie Hospice, Solihull, said: “The effects of Covid-19 are far from over. Like other healthcare settings, we continue to put measures in place to prevent the spread of the virus.

“We want our patients to be able to live well and to enable their families to get the best out of those last few days, weeks, months, and years as they can.

“The finding from this research have been painful to read, and it is troubling to hear about some of the stories people have shared.

"I urge anyone out there who is living with a terminal illness and is worried about how to live well alongside Covid-19 to speak to our information and support team. They can give people practical help to manage risks but also be there to provide a listening ear and emotional support.”

Marie Curie is the UK's leading end of life charity which provides nursing and hospice care for people with any terminal illness, a free support line and information on all aspects of dying, death and bereavement.

The Marie Curie information and support team can be contacted on 0800 090 2309 or via www.mariecurie.or.uk/help .