Hi. Sorry I’m not well enough atm to go back and read the other threads in the NICE forum that I’ve participated in - I remember writing related to this but don’t remember if I’ve mentioned this specifically. will there be something in the NICE guidelines about hospital admissions for those with ME? Especially with severe ME? As far as I know so far There’s only something about .. patients with severe ME may need to be admitted to have investigations done (as will get too tired travelling). But going through a hospital admissions process for me for surgery at an NHS hospital has been hell. I just think there needs to be something firm in there. And not rely on a hospital passport (which I’ve heard is coming) but from what I can see the NHS is so busy & quite frankly they either have no time for complex patients or don’t want to have time for complex patients, and they can cause so much harm. - About having their own side room being crucial and why. (Light sensitivity noise sensitivity movement sensitivity contributing to physical deterioration) - Needing to be allowed to have their own familiar carers - Light Sensitivity & how it can be far more severe than in other conditions even (Severe/very severe ME) - Noise sensitivity, again as above - Movement can trigger deterioration, so not to move people unnecessarily - Not too many people in the room at once if they can help it - To be careful to space out appts If patients can’t travel As an example my surgeon, understanding my light and noise sensitivity, said at first he would give me my own room. Then he said he wanted to put me on a HDU ward. Then it turns out there is no HDU ward. Now they’re saying they won’t put me in own room and will be on a ward as they don’t have many beds. Right now if I even listen to 10 mins of loud ish music I deteriorate & become unable to eat. Can you imagine me on a ward after a surgery? What will happen to me? then they’ve told me I need to travel in 3 times (45 mins each way), a 1.5 hour journey, 3 times in one week, just before my surgery. I would deteriorate so badly. So basically because of all these reasons I can’t do it now. I’m terrified at the thought of what’s happening to others like me or even worse than me. I feel like if there’s something specifically under a headline of hospital admissions, then we as patients, can point to that to say: look! This is what we need. Otherwise we can end up in awful situations like this. Patients shouldn’t have to be terrified of going into hospital or even not go in, placing their health and lives in danger even at times, because of how they’ll be dealt with.