Thread by @chrischirp

THREAD: for anyone working with those or living with long term conditions whose care is being disrupted by Covid.

We asked parents of kids with Congenital Heart Disease (CHD) and adults living with CHD about their 1st wave experience...

Important lessons emerged! 1/6

Firstly, a lot depended on how well someone felt - people coping well with their CHD or those who were seen just before March lockdown were less worried. People with more complex disease were more likely to be worried and some had had no contact at all from specialists. 2/6

Many people spoke about getting different messages from different people - particularly about shielding and whether they shoud be at work / school.
People who had access to someone they could call for advice really valued it.
Some GP experiences were better than others... 3/6

For people who had treatment or check up postponed, the wait was very hard and very worrying. They felt that they were now responsible for managing a really complex and dangerous condition - the uncertainty of when things would change was also hard. 4/6

Services are now being suspended again. What can clinical services do better this time? Lots!
So much is about consistent and clear communication, having a phone number that people can call, reassurance that urgent problems would be dealt with.
Full recommendations in pic 5/6

You can read the full preprint here!
medrxiv.org/content/10.110…

Although this is about CHD, the recommendations are applicable to any specialised service for people who need regular check ups and treatments.

Please read and share! 7/7