END of life charity Marie Curie warns that a lack of access to regular and comprehensive testing for frontline hospice staff is compromising the care of dying people.
The charity is demanding that hospices be included in weekly testing (proactive surveillance) to mitigate the risks of asymptomatic staff unknowingly transmitting Covid-19 to other staff and to ensure the charity has enough staff to keep its hospices open fully.
As the UK’s largest provider of hospice care outside the NHS, the charity is concerned that rising cases of transmission could impact the charity’s ability to operate fully and safely while supporting the increasing number of people who need palliative and end of life care this winter.
Alongside hospice staff, the charity is also calling for regular weekly testing of an identified close relative or carer, who will be able to continue to provide support and visit.
Different approaches to testing across the UK are also leading to confusion and means that asymptomatic Covid-19 positive staff are not always identified early resulting in staff and patient safety issues. Some local Health Protection Teams recommend testing all staff in an outbreak situation while others will only test symptomatic staff.
Marie Curie is also concerned that vulnerable people in crisis may decline admission to hospices for fear of contracting Covid-19.
Dr Sarah Holmes, Medical Director at Marie Curie, said:
“While staff who are symptomatic or have a family or household member who is symptomatic will still need to isolate, this still leaves us with a dilemma as we know that staff can remain asymptomatic and we wouldn’t know.
“Every day that passes without a regular weekly testing regime in place for hospice staff puts the most vulnerable people in society at risk. The lack of testing could also end up paralysing not only Marie Curie hospices but other independent providers too.
“The transmission of the virus from asymptomatic staff to other staff can be a problem despite the most stringent infection control measures being in place. Prompt identification of asymptomatic staff can reduce the risk of wider staff shortages caused by the spread to other staff. Every time we have staff shortage, our ability to support people with and without Covid-19 is reduced, placing extra pressure on NHS hospital beds and other community services.
“We do not want people who need our help to decide not to come to one of our hospices because of fear of contracting the virus, or not being able to have any visitors.
“We also believe that regular weekly testing of an identified close relative or carer should be put in place. They are a key member of the care team in a hospice and are involved in care decisions and crucial to the experience of the person dying. With regular testing, we can be more confident that visits by this identified individual are not compromising the safety of everyone in the hospice.”
“We only have one chance to get this right for people at the end of life and their loved ones. No one wants to see a repeat of what happened during the first wave of COVID-19, with thousands of dying people separated from their loved ones or making the impossible choice of not seeking the help they desperately need. Regular testing is central to avoiding the mistakes of the past as we focus on the coming weeks and months ahead.”
Caroline Kennedy, 59, died on 3 July 2020 with ovarian cancer. Her daughter Charlotte Kennedy, 27, from Enfield, London, explains the issues faced by the family and heart-break experienced by her Dad, Paul, 56, during her Mum’s last few months. Charlotte says testing would resolve ‘impossible situations.’
“Mum went into a hospice for a couple of days in May 2020, but we took her back out because we couldn’t see her. It just wasn’t an option purely based on visiting restrictions.
“We knew about the restrictions because we’d dealt with it at the hospital. The first question we asked was what were the visiting restrictions at the hospice? That’s one of the main things we looked for and then made decisions off the back of that really.
“The hospice was on complete lockdown. They wouldn’t allow any visitors at all. My dad would go down most days and chat with someone at the door but he wasn’t allowed in. I went down with him once and they let us wave through a window at her, but that was it. It was heartbreaking not being able to be with my mum. So, it was very much a conscious decision by the family to bring her home so we could be with her.
“If the pandemic hadn’t happened, Mum would definitely have gone into a hospice. Maybe not for the whole time, but when we needed a little respite at home we would have used the local hospice to some degree.
“Our priority was spending time together as a family at the end, so there wasn’t really a choice. We had to have her at home, but things aren’t always that difficult. Families shouldn’t have to take on that level of responsibility.
“When we chatted to hospital and hospice staff, we offered to pay for our own tests so we could come in to see mum. But at that point, it was a blanket no to visitors. If there had been anything we could have done, we would have.
“It’s inconceivable that people have to die alone, without their family around them, just so they can get the care they need. Testing is the answer and it would resolve that impossible situation.”
The charity has written to NHS England to prioritise hospices to ensure that the doors remain fully open this winter.
Furthermore, Marie Curie is also concerned about delays and shortages of flu vaccines for hospice staff. The charity says it’s another ‘kick in the teeth’ for hospice and end of life charities as they continue to fall between the cracks of the NHS and social care.