Clear COVID health information essential for return to normal healthcare – report

A lack of clear information on COVID risk is stopping people with long-term conditions accessing the care they need – and could be storing up problems for the future.

People living with long-term health conditions have been missing vital tests and monitoring because they fear contracting the novel coronavirus.

A survey carried out by the Patient Information Forum (PIF), and supported by Norgine, this summer found that almost one in three respondents had delayed accessing care during the pandemic. Three quarters said this was because of their concerns around COVID-19.

Of the 800-plus people who took part in COVID Choices, 59% were living with a long-term condition, but many were more concerned about the virus than they were about the implications of missing appointments.

Presenting the results, Sophie Randall, head of partnerships and strategy at PIF, said: “When we asked people about accessing health care, 30% said they had delayed seeking treatment and mostly that was because of COVID concerns.

“They had delayed all types of care. Routine blood tests and medication monitoring were probably the most common, but some had avoided visiting the GP, and others had even avoided A&E.”

More than half, 57%, of the respondents who took part in the survey in July and August said they were concerned about attending future appointments.

Mixed messages

Uncertainty, fuelled by a lack of adequate information, is driving this fear and anxiety, Randall explained, adding that people did not have the facts they needed to understand their own risk based on personal circumstances.

As a result, just over half of the survey’s respondents were “somewhat confident” in their ability to protect themselves from the virus, and only 29% said they were “very confident”.

“There's still some confusion around how to protect yourself from COVID, particularly in at-risk populations,” said Randall, adding that the survey also asked people where they preferred to get their information.

Rather than make decisions based on their own research and network, 68% said they preferred to follow trusted guidance, with the NHS and World Health Organization ranking as the most reliable sources. Official government advice, however, did not seem to be cutting through, said Randall.

“Lots of people were looking to the government to provide that guidance, but they are not finding it satisfactory,” she said.

“Inconsistent information is undermining trust and leading some people to be over-cautious. They think they need to protect themselves over and above the official advice and that goes as far as avoiding healthcare.”

Practical information

Patient advocate and member of the study’s collaborative group, Trishna Bharadia, said that there had been an “overwhelming feeling of anxiety” about the impact of COVID-19 on long-term health management among patient groups for much of the year.

“Many people are still finding things difficult, even though we've been in this pandemic now for about six months. In theory, we should all be experts in COVID given all the information that has been disseminated about it,” she said.

“The survey results show that there is confusion, there's mistrust and there are gaps in information, and that is having an impact on long-term health management, on mental health, and on access to additional support services.”

People who are classed as extremely vulnerable and were asked to shield back in March had been particularly affected, she went on.

“Now that we've come out of the full lockdown, we are being expected to somehow return to normal. But the lack of clear information has made many patients err on the side of caution.

“After spending months being told to stay at home because we're vulnerable it's now hard to leave. Better information on personal and local risk could help overcome this.”

People need much more than the facts about coronavirus, however, before they will feel it is safe to return to their health appointments. Providing practical advice ahead of upcoming appointments, Bharadia explained, would help to banish uncertainty and ease concerns.

“It's imperative that people are getting the information and support they need to start accessing healthcare again in a way that they feel is safe,” she said.

Video walkthroughs and step-by-step guides, for example, can communicate the safety measures that have been put in place, as well as help orientate people before they arrive at the hospital or clinic.

“What's important here is to include patients in the creation of this information. Often, we will want to know things that nobody else thinks of: things like is the car park system completely contactless, will I have to touch any door handles, or can I wear a mask if I'm having an MRI, a CT scan or an X-ray,” said Bharadia.

Ultimately, the survey found that fear of SARS-CoV-2 was driving people living with long-term conditions to miss vital appointments, increasing the likelihood of both physical and psychological complications later on.

The COVID Choices team argue that clear, evidence-based information that accounts for current circumstances and health literacy is the key to removing these anxieties – and enabling a return to healthcare as normal.