A THREAD about disability, chronic illness, COVID, the NHS and the ‘trickle down’ effect.

I talked about this on IG Stories yesterday and many people said they found it helpful, so I’m posting it here, too.

I don’t see this spoken about enough outside of disability circles, so I just wanted to highlight it for those who perhaps were not aware.

For context: I have a rare genetic condition. I have not left the house aside from going for walks since March 2020.

Personally, I have been asked a few times what I am most looking forward to when things “get back to normal.” Obviously, I will be very excited to see my family, who I haven’t seen for over a year, but what I need more than that (or need in a different way)

and I know this is the case for so many people who have chronic health conditions, are disabled etc, people who have conditions that need to be managed and who need to see lots of different specialists, like I do… I need access to my healthcare.

I haven’t been able to go to any in-person hospital appointments since March. I have had phone appointments for various different things, but obviously that is not the same. I go to Moorfields for my eyes but you can’t do an eye exam over the phone.

Before the pandemic, I was referred to a new hand surgeon, but then I couldn’t meet with them, so I’ll have to start that referral process all over again.

It’s a really difficult balance between going to appointments and managing a chronic condition but also (because I’m clinically vulnerable) not getting coronavirus.

Having to make decisions like that is really tricky. And that’s not mentioning the fact that our IVF was cancelled in 2020. I don’t know when or even if we will be able to start that again. I’m trying not to think about that because it’s incredible upsetting.

When we’re talking about protecting vulnerable people, and stopping the spread of COVID, I think that a lot of people forget that this is about access to the NHS for everybody, for things that don’t just relate to COVID itself.

This week, some hospitals announced that they cannot provide emergency cancer surgery because they don’t have the facilities right now. https://www.theguardian.com/world/2021/jan/02/cancer-operations-face-cancellation-across-london-as-covid-patients-fill-hospitals

This is the trickle down: the huge things that mean that people are dying, and the smaller but cumulative things which mean disabled people (and others) cannot access the healthcare they need, and that again has repercussions later on.

Not to mention that 59% of people who have died from COVID have been disabled. https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/coronaviruscovid19relateddeathsbydisabilitystatusenglandandwales/2marchto14july2020

Thanks for listening. I also wanted to share some responses — shared anonymously and with permission, of course. x