People with terminal illness across the West Midlands are still living in fear of catching Covid-19 and dying early according to research. Their experiences were described in four reports, which contain recommendations for hospices.

A new film, released by researchers from the University of Warwick and the end-of-life charity, Marie Curie, highlights that people with 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.

The research gathered evidence from across the West Midlands from people living with terminal illnesses, their carers and health and social care professionals.

Speaking in the film, Wendy, who has stage four lung cancer, said: “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[1], 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!’”

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.

Associate Professor John MacArtney, Warwick Medical School, 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. We hope that our research sheds light on how the pandemic is far from over for many patients, families, and hospices.”

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. It is important that we protect our patients, staff and volunteers but also keep providing the care and support people need, that helps them stay active, socialised, and supported through their illness.

“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.”

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

For enquiries please contact:

Annie Slinn, Communications Office, University of Warwick. Email: Annie.Slinn@warwick.ac.uk

About Marie Curie

Marie Curie is the UK's leading end of life charity. The charity provides essential frontline nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death, and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end-of-life care and bereavement support.

Please note we are 'Marie Curie' (not 'Marie Curie Cancer Care').

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  [1] Some names have been changed to protect participant identity