The NHS has to go beyond telling people to attend hospital and GP services and instead explain how it is working to keep them safe throughout their healthcare experience, says Ceinwen Giles

The Covid Choices survey highlights the need for patients to have good quality, clear, and consistent information about attending appointments and the precautions being taken to ensure they will be safe. There’s a real need to go beyond telling people to attend hospital and instead explain how the NHS is working to keep them safe while they access healthcare.

The results from more than 811 people who responded to the survey, most with long term conditions, show the conflicts people face when trying to decide whether to seek medical care. Is it a greater risk to attend an appointment and possibly be exposed to covid-19, or to leave a medical problem to a “wait and see” approach when it’s unclear whether something is serious or not?

For people who are, or were, shielding, the risk of attending medical appointments may seem even higher. If you haven’t left your house for any reason, going into a building with others who may be ill is quite a large mental shift. This is particularly the case now that the number of covid-19 cases are rising across the UK and new restrictions are being put in place (or are changing) regularly.

I know from my own personal experience how unsettling it is to change treatment as a result of covid-19. Rather than attending the hospital once a month for an infusion, I now do home therapy which requires 20 smaller infusions per month. As I have an immune deficiency, it doesn’t make sense to attend appointments in a large, London hospital where they’re also treating covid patients, although at my last appointment at the start of April, the hospital was empty and the staff took a lot of precautions to keep patients safe. I really haven’t warmed to the multiple home infusions, so once it’s considered safe, I’ll be back at the clinic.

Despite huge information campaigns, according to the survey, only 25% people said that they have enough trustworthy information on attending hospital, in part because of mixed or confusing messaging from various different sources. Around 1 in 3 people said they had delayed healthcare and this was broadly consistent across all conditions. This rose to 2 in 5 for people with diabetes, lung disease, and mental health conditions. The biggest factor driving concern was whether people had access to trustworthy information. This was bigger than any other demographic factor or underlying condition. This highlights the need for clear and consistent messaging across all parts of the system, including the government and healthcare services. from the UK government to local GPs.

48% of respondents wanted more information about their personal risk. For me, this is particularly important as I have a rare immune deficiency and relatively few doctors understand it. In my case, it meant that my GP initially told me I didn’t need to shield but then later said I did, while an immunology charity developed their own guidance on risk which did not map directly onto government guidelines related to whether you should shield or not. 

The truth is I’m considered “vulnerable” but not “extremely vulnerable,” a nuance which actually doesn’t make much difference to me. I need to be very careful and will continue to do so. But I only learned this and developed my own approach after a long discussion with an immunologist, from doing my own research online, and chats with my husband who, as luck would have it, is an epidemiologist. Many survey respondents have also had to develop their own approach to risk, particularly in the face of local lockdowns.

Of those who did experience face to face care, 25% of people did not receive information about covid-safety measures prior to an appointment, and more than half (57%) of all respondents were concerned about attending future appointments. However, 61% were satisfied by the measures taken once they attended. 

The free text comments revealed people wanted very clear practical information before appointments about where they would be seen, how they would access facilities on arrival, whether they could bring a carer, what doctors and nurses would be wearing, whether they should wear a face mask, and how they would be kept safe from the threat of the virus. If the NHS wants to see people presenting for medical appointments we need to provide clear information that addresses people’s concerns on issues such as communal waiting areas, public facilities and public transport.

Some NHS Trusts are already doing this, helping to overcome uncertainty and encouraging people back to care. Covid-19 safety now needs to become part and parcel of every appointment. Patients shouldn’t need to have to ask; information should be given at the time an appointment is booked, with clear advice about what precautions are being taken at the medical centre, and what precautions the patients themselves should take before and during attendance.

Ceinwen Giles is director of partnerships & evaluation, Shine Cancer Support; chair, Patient & Public Voices Forum of the NHS England Cancer Programme; and member of the steering group that developed the Patient Information Forum’s Covid Choices survey.

The Patient Information Forum is the UK membership organisation for people working in health information and support. www.pifonline.org.uk

Competing interests: See a declaration of interests on bmj.com