Thousands of blood cancer patients plan to shield indefinitely after the UK has come out of its coronavirus lockdown, a survey has suggested.
Despite infection rates slowly rising and new variants emerging, Boris Johnson has said he can see "nothing in the data" to delay England's exit from the restrictions on 21 June.
Early research suggests the coronavirus is mild in four out of five cases, however, it can trigger the disease known as COVID-19.
In December 2020, scientists from the Princess Margaret Cancer Centre in Toronto reported just over a third (34%) of people with a blood cancer or disorder – like sickle cell disease – die if infected with the coronavirus.
To better understand patient concerns, the charity Anthony Nolan surveyed 273 people with one of these conditions.
More than two in five (44%) said they will continue shielding, equating to 110,000 people across the UK. Of these, a further 44% have no plans to return to normality any time soon.
One patient has said she still does not feel safe, while another worries the public "will become lax" as we return to the lives we once knew.
One who knows the anxiety of lockdown lifting all too well is Sharne, 18, from Staffordshire.
Three years ago, the teenager was diagnosed with aplastic anaemia – when the bone marrow does not produce a sufficient number of red blood cells, which transport oxygen around the body.
"At the start of the pandemic I don't think I left the house, even just to go to the shops for food, for weeks," she said. "This was out of plain fear for my health."
Sharne, who hopes to start university in September, plans to shield until there is more certainty there will not be a dreaded third coronavirus wave.
"I just don’t feel safe," she said.
Of the survey participants who will continue to shield, 44% are worried about a third wave, while nearly three in five (58%) are concerned about the vaccines' effectiveness.
In March 2021, scientists from the Francis Crick Institute in London reported that just 13% of blood cancer patients produced an antibody response against the coronavirus three weeks after the first dose of the Pfizer-BioNTech jab – compared to 97% of people without the disease.
This may be a particular concern considering the interval between the vaccines was extended from three weeks to up to three months, to maximise the number of people receiving a first dose.
Some are confident in the vaccines, however. Just under a third (29%) of those who plan to continue shielding say they will stop after receiving both jab doses.
That being said, nearly one in 10 (8%) will shield for more than a year, the results show.
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The survey has also flagged how the patients' mental health has been affected amid the pandemic, with just under three quarters (74%) claiming their emotional wellbeing has deteriorated – a problem Sharne understands.
"My worry and anxiety have been absolutely through the roof," she said. "It's been awful."
Hodgkin's lymphoma patient Jennifer, 35, is also anxious about society opening up.
The mother-of-two was diagnosed with the cancer – which develops in the lymphatic system – in January 2016, undergoing a stem-cell transplant in July 2020.
"Our entire family is still shielding, which has been tough for us all," she said.
"My daughter was meant to start school in September but only started in March, so missed out on time around other children."
Jennifer's husband resigned from his job as an electrician when colleagues started catching the coronavirus.
"He’s now my full-time carer", said Jennifer, from Birmingham.
"My biggest concern in the coming months is the risk of new variants and having access to the right booster jabs [assuming they are rolled out].
"If people become lax it will mean I cannot stop shielding."
Off the back of its survey, Anthony Nolan is urging the government to "do more for vulnerable patients" by funding research that confirms the vaccines are effective among people with a blood cancer or disorder.
"These patients were identified by the NHS as amongst the most vulnerable, yet they have been forgotten time and again during this pandemic," said Henny Braund, the charity's CEO.
"We cannot risk the UK becoming a two-tiered society with these patients receiving less protection from approved vaccines and being forced to shield with little access to services or support."
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