Table 2

Further illustrative quotes relating to healthcare themes

Remote healthcareBenefits of telehealthThey switched it to a telephone appointment. I was really impressed! The consultant was clearly liking the format too, because he suggested the same next year! Oh, and we were ‘seen’ early - no hanging around for an hour in Clinic 6. It was actually a much better experience than normal.
Good communication and careWe feel we’ve had good care and lots of support and all our questions answered as we could write them in an email.
Still a good level of care and compassion even though over the phone.
Limitations resulting in uncertaintyThere appears to have been a real failure to assess the risk of face to face appointments vs the risk to patients of not being seen… had we had a face to face assessment earlier, we might have avoided the blue spells in April/May.
I am concerned that her health has deteriorated slightly over the last month of two and I really would have liked next week’s TOF clinic to be face to face as I think the respiratory consultant needs to listen to her chest.
Organisational difficultiesThe consultant phoned a couple of weeks before the expected appointment. This meant we weren’t prepared so didn’t ask all the questions/mention things we would have wanted to.
It’s been very difficult to get advice about health issues while the pandemic has been happening it’s as if my child’s care completely stopped at one point.
Delays and cancellationsSlower progressWe were very concerned about delays to her treatment, and the placing on hold of treatment and check ups, and that the longer term welfare of …. children in particular, was being jeopardised.
Not having face to face it seems a very very slow process to get him weaned off the tube and start him on solids with the help of SaLT.
Escalation to emergencyWe had to wait months for an elective scope and dilatation, this became an emergency procedure as was not carried out on time and symptoms persisted.
Feeling abandonedThe only thing I think has been compromised is support from Speech & Language. They seem to have forgotten us & haven't been very helpful
On many occasions, I would have taken my child in to see the health visitors had they been open.
Inpatient careCaring alone…the one parent for hospital stays is incredibly hard. To expect parents not to be with babies when they go in for surgery is really harsh.
When you have a child to care for, then the ‘one parent’ rule means you’re trying to do multiple jobs at the same time, which is not efficient for the medics, and not good for ensuring your child gets the care needed.
Hospital avoidance…advised to be very cautious and during first lockdown we were told by his consultant she didn’t want him anywhere near a hospital (for procedures) as too high risk.
Feeling safe with infection control measuresWe had a heart scan at (hospital name) and that was also mid first lockdown and also very safe and clean. Have no complaints at all!
  • TOF, tracheo-oesophageal fistula.