Simon Burall

1 year ago, I left for Mastodon; a low cost decision because I was ill and not posting. I'm coming back slowly now. My network is largely still here, I need to keep contact. So I'll post on Mastodon first and here three days later. The sooner we can stop enabling Musk the better

Checkout @BylineTimes . Their Editor @Hardeep_Matharu grwat speaker @unisouthampton today chaired by @JYDenham

@allyc375 Great this is reassuring I’m havinrandomsei sure a because of cancer in th brain

@DavidGilbert43 Ikeepwaking up with powerful delusions abou leaving hospital then my wife has to destroy them leaving me sad and cryin. Gin

@SDenegri @DavidGilbert43 How are you? It’s be good to catch up

23 years since the Kennedy Inquiry that said engagement must be embedded in the NHS. Yet still patients have no real say in policy or influence across systems or commissioning or within providers. We are still in the dark ages when it comes to patient power.

@tamar_whyte @kmachin Send me the reference or a link for my newsletter? inhealthassociates.co.uk/patient-leader…

@juliet4200 @Liz_ORiordan It’s thblood thinners in thbelly that testingme!

@Liz_ORiordan I am assuming by bum you mean I.m not PR

Back in the chemo suite for bum injections of Faslodex. Every month for the rest of my life Never gets easier

@Liz_ORiordan Urg sorry to hear that I’m leaning sideways in my bed trying to eat and recover . No needles tankfuly although that was prob ably a stupi thing to say fish in c’creamy sauce coming’ judging b smell

@DavidGilbert43 Perhaps an argument is re digital creating silos that limit ‘true visibility’ of whole patient. Digital essential but not at the expense of yes/no decision trees that limit real visibility. Things get missed. Resources wasted. Time taken allows patient deteriorate. Worse outcomes

@SimonMaxwell001 youhavejust have received a confusing text message from me apologi;it’s followed up by an emailwhich should make sense

@HastingsJ123 Thankyou!

@sburall So sorry to hear this, Simon. Sending best wishes to you and your family

1/It’s been a while since the last update, apologies. We’ve had some bad news to absorb; though I’m recovering slowly from the stroke, the oncologists think the #cancer isn’t treatable

@NeedMoreCourage @DavidGilbert43 👍

@DavidGilbert43 ....but if it helps then money well spent 👍🤞👍

I’ve had my microbiome tested… Apparently there’s some fucker of a bug family that should only be 4% of my microbiome - it’s at 34% and emerging evidence it causes anxiety, depression and OCD! 😳😡😳

@DavidGilbert43 🦠

Really exciting set of masterclasses being coordinated by @_rmhart on public engagement, facilitation skills and equitable engagement

@g_handley Thanks Geoff

@sburall So sorry to hear this Simon. My thoughts and best wishes with you and your family.

@ConduitTrans @involveUK You were right then I think I was ttoo naive

"gathered", NHSE, supposedly, listened. However, in late 2015 NHSE dumped @involveUK & Gender Services' Task & Finish Group. We expressed concern at both. But by mid-2016, NHSE stopped gathering too & had begun to, wilfully, harm Gender Services. The rest is history... 🏳️‍⚧️😢🏳️‍🌈 3/

The Trans & Non-Binary community, in the UK owe @sburall, @involveUK & @38degrees its thanks for helping us delay the appalling abuses, we see today from @NHSEngland towards our community. @NHSCitizen started before NHSE did in 2013. Its beginnings were humble ones. But, in... 1/

Advice:If you’re going to use awhtsap broadcast to update friends about health developments Ina stark way; remember yourchildren are in th group

Eltofo in episode2 of disenchanted series6-captures where where I am”it’s not The-loss of the my past memories” I’m mourning but the future I won’t see Dakota cartoon got there before me