The aim of the survey was to explore the experiences of remote consultations by members of the immunodeficiency community. Since the start of national restrictions due to the coronavirus pandemic, many consultations have moved from face-to-face to remote (telephone video or online) both in general practice and hospital specialties.
This survey asked members of the Immunodeficiency UK Community for their experiences of remote consultations with their Immunology Teams. The survey ran from 13th May to 7th June 2021 and was made available via social media, Immunodeficiency UK’s newsletter, and an emailed member invitation. Immunodeficiency UK would like to thank those who took part.
We report the key findings and recommendations below and you can download the full survey report here.
- 91% of respondents who were offered a remote consultation since April 2020 were not offered a face-to-face consultation as an alternative
- 83% of respondents were happy to be offered a remote consultation but 84% of respondents would prefer at least some face-to-face consultations in the future
‘Unsure what to expect, never had a telephone appointment before’.
‘Very good communication and consultation. I did not require a physical examination so remote was very good for me’.
‘It was just as useful as a face-to-face appointment, which I would not have even considered at the time’.
‘Did not have the usual physical examination. I missed having face to face contact’.
‘I live 130 miles away from the hospital, so it was helpful to have the consultation on the phone. I would prefer a video consultation than a phone one with alternate face to face consultations.’
‘You can’t fully explain over phone u need to be in person’
‘Useful to have telephone appointment for occasions when my son does not need to be present for a physical exam or tests…eg if it is just a discussion. Means he does not need to miss school’.
- 8% of respondents had a disability which affected communication
‘Hard to make out all that she was saying due to hearing problems’.
- 47% (less than half) of respondents were completely confident that their medical needs had been properly assessed
‘If I hadn’t taken the initiative and got my GP to arrange the bloods before the consultation, I wouldn’t have had a full review. At the time I wouldn’t have wanted to go to the hospital for the bloods, but there’s no reason why they can’t be done in the community, in advance of the consultation. I know it was not an emergency, but a bit of thinking and coordination would have helped a lot.’
- The main positive points which people highlighted were not having to travel to the hospital by car or public transport, not being exposed to the risk of contracting Covid-19, and the convenience of being at home
‘Didn’t have to drive for 1 hour to get to the hospital so much more convenient. Had the opportunity to ask several questions that I have written down to ask the doctor’.
‘I didn’t have to make a 180 mile round trip to the clinic and home. Didn’t have to wait with strangers to see the consultant.’
‘Not having to go to hospital where there is still some additional risk of picking up a COVID infection‘.
- The main negative points were the lack of a physical examination and access to investigations, poor rapport including lack of visual contact, being rushed, communication difficulties and lack of follow up.
‘Blood tests, lung function tests and abdomen ultrasound not available’.
‘I feel face to face is best. Usual physical checks are important’.
‘No eye contact/non verbal communication. Also Tel consultation meant I couldn’t have physical examination (re immunoglobulin treatment/stomach, lungs -(asthma, Bronchiectasis etc); & couldn’t have the more complex/specific blood tests which I usually have 6 monthly (my GP did do basic blood tests on behalf of the hospital)’.
‘The doctor was very late calling so I was worried that we had been forgotten about or issues with getting through etc. I telephoned the clinic to be told they are running behind but perhaps it would have been considerate to telephone those who were waiting so they didn’t need to worry.’
‘I’ve heard nothing since the call, no follow up, no info on what happens next. Basically, left in limbo feeling my problem wasn’t urgent enough so I’m now reluctant to make another appointment in case I’m seen as wasting appointments’.
‘Need to ensure that you cover any issues you may want to raise by writing a prompt sheet beforehand’.
‘It is less personal not being able to see the consultant. It feels like you need to be very well prepared beforehand to get the best from the discussion. It is perhaps less easy to resolve any difference of opinion if not face to face. Still had to travel to the hospital for blood tests.’
‘I am finding it extremely difficult to contact the hospital at present, (name of centre) they don’t answer phones or emails, so it would be helpful when we have a meeting, there was a way to ensure we cover everything. My GP surgery has the same problem with them’.
Recommendations for medical teams
1. Maintain traditional models of care alongside remote consultation methods of care (in person, telephone, email, video) and support people to ensure the most appropriate type to meet their needs.
2. Provide a clear expectation to patients about what will be involved in a remote consultation.
3. Ensure people with support or access needs are not disadvantaged when accessing care remotely.
4. Prepare for the consultation and don’t ask patient for information that you already have access to.
5. Be proactive and work with patients to learn about their preference of remote consultation methods.
6. Make time for the patient to ask questions.
7. Make clear what will be happening next and who is responsible for next stages of care.
8. Always provide patients with contact details of whom they can contact in case of enquiries or in an emergency.
9. Seek feedback of a patient’s experience of care and use this to improve the service.
Recommendations for patients
1. Let your health care provider know how you prefer to talk by phone, video or in-person.
2. Take some time to prepare in advance, consider what you want to say and key questions you would like to ask.
3. Ask your health care provider to summarise the next steps at the end of the appointment.
4. State your preference of what method of remote consultation you would prefer.
5. Ask for help and support if you need it concerning use of technology or information on how the consultation will work.
6. Not all appointments are suitable for remote consultations, if you would like to see someone in-person please say so.
Posted 28th July 2021