*** UPDATE***

A huge thank you to everyone who donated in autumn to Henry’s fundraiser, it is super appreciated and helped him get through an extremely rough time. His friends have been busy supporting him in navigating a bunch of challenges and emergency situations since then but we wanted to update you on what’s happening now and to ask for your support again due to a few recent changes.

Updates:

Henry’s emergency care package from the council ran out in May and he was reassessed (though not thoroughly enough, nor accessibly). His care hours have been reduced and allow for little more than feeding him and helping him use the commode. This is even less than he was allocated as an emergency measure when his previous informal carer had to leave last year. There’s not enough time to wash him regularly or do other necessary personal care and household tasks he can’t do for himself due to being bedbound.

He’s having to over-exert regularly and go into Post-Exertional Malaise, which, amongst other symptoms, causes him seizures, fainting, migraines and lowers his baseline.

People who were helping out in person have recently had to step back so he now has no extra in-person care and no choice but to pay for expensive private services to fill gaps, which he can’t afford.

In short, Henry is still having a very difficult time and his health is highly unstable - without sufficient care he’s at risk of deteriorating even further. With M.E, expending too much energy repeatedly can lead to a permanent decline and further disablement so it’s really important that we do everything possible to get Henry the support he needs: Care gaps need filling urgently so he can gain stability.

These are the most pressing needs that need fulfilling, that the money will be spent on:

Private care & services - to fill the gaps left by social care

New bed & matress - Henry can’t move around in bed much and problems with his bed and matress are a major cause of pain, fatigue and PEM but the NHS OT won’t provide what he needs

Private medical appointments - he needs an accessible echocardiogram to check his heart, amongst other tests

If we can cover Henry’s ongoing care and stabilise his living situation and health it will do so much to improve his quality of life.

Please donate if you can - any amount is welcome - and share this post!

As before, he will not receive or control the money himself but all funds will be used for carers and items listed above.