Support during lockdown

[AFCWombles]

Good morning hive mind. I'd be interested to hear how people have sought and received support since the March lockdown. I've just opted for a phone consultation instead of my annual physical check-in. What is your experience?

[AwesomeAT]

Having a son with Autisim & Cystinuria & other complex needs I feel we have been let down until the 2nd July we have not heard from any health professionals, even at the beginning when I wanted to shield my son you could not get a straight answer wether I should or not shield, then on the 2nd July one of his nephrology consultants rang I explained he had not had any tests Ie bloods, scans, etc,since last year & she agreed he should of Still of had them(we are still waiting!), I know a lot of things have been cancelled but when a child is so vulnerable I feel we have been left!

[AFCWombles Administrator in reply to AwesomeAT]

Sorry to hear about your experience. Hopefully, you will soon get the support your son needs. Keep pushing and I'm sure things will improve. How is your son?

[AwesomeAT in reply to AFCWombles]

Turning into a teenager, sleeping far too much & unless I nagg not taken his meds regularly(he’s only on a bicarbonate solution)but seems to be keeping his PH down). Yes I’m used to fighting for him so won’t give up! Hope you are well, when will you see someone again, are you in the UK?

[AFCWombles Administrator in reply to AwesomeAT]

I remember those days. My younger daughter is back from university and we don't see her before 2pm on most days! Keep nagging him, as it is for his own good. I'm based in London and consider myself fortunate that I have not required any surgery since 2014 (fingers crossed). That's mainly the reason why I have chosen a telephone consultation

[AwesomeAT in reply to AFCWombles]

Aw bless keep safe & keep well

[SwampyUK]

I have have found that living alone since lockdown seems to have made my stone formation/infection more frequent yet, support for it, I would have to say has been virtually non existent. I know from experience that a call from the hospital is not going to do or clarify a thing without scans. So support where?