My sister has gone practically blind.

[Unforgettablefire]

I don’t know where to start it’s devastating.
She had a clot behind her eye 20 years ago and lost her sight in that eye, she can see a tiny rim around the eye and no central vision at all.
The other night the same happened to her other eye and she’s lost her whole vision in that one.
It’s horrible. She’s absolutely distraught and we don’t know how to help her, I don’t know whether she’ll need a social worker or carer or what but she lives in London on her own. We are in the north and she’s adamant she’s going back on Saturday her life is there.
Can anyone advise where we go from here? The hospital haven’t been much help they tried treatment and basically sent us away saying nothing more to be done.
She can’t see. My mother is going to London with her for a few days but she can’t stay there she’s nearly 80 and I can’t go I have just been diagnosed yesterday with IBD and have appointments.
Sorry for rambling it’s just so much to cope with.

She can’t make the call, so?

Initially it’s absolutely fine for someone to step in so she can access help, once she has that support there will be a period of learning and adjustment but for now, given how urgent the situation is, it’s fine for someone one else to make that call.

Definitely contact the RNIB. They have specialists who have experience in how to cope after becoming suddenly blind. https://www.rnib.org.uk/living-with-sight-loss/community-connection-and-wellbeing/rnib-helpline/

Oh your poor sister. What a life changing thing to have happen. I'm so sorry :(

If she is going to London, then go straight away to Moorfields eye hospital in Old St for treatment and a second opinion. I think they have an emergency walk in clinic.

Thanks again for the replies I’m taking note of all the suggestions.
She has a Samsung phone and my dd tried changing her settings but couldn’t work it out. She can’t see her phone to make a call so she’s literally helpless at the minute and we are doing everything for her but obviously she’ll adapt in time. She’s just crying constantly at the minute, she loves animals, goes to the park in London every day to feed the birds and she’s friendly with a fox. She’s so upset she won’t see them anymore.
I’ll see if she can get an iPhone then we can change the settings.
I think she was at western eye hospital the first time it happened in her other eye. She was sitting on the bus right outside when her vision went so she got straight off the bus.

You can walk in to Moorfields casualty department and be seen straight away. If anyone can take her it is easy to get there.

I’ll mention it to her I’m seeing her today.
It’s called optical occlusion and apparently you have to be quick to get the treatment for any hope of saving your sight but even then it sometimes doesn’t work. They gave her something to release the pressure in her eye, had her massaging her eyeball and blowing into a paper bag. The clot moved a bit but all she can see is a rim of kaleidoscope patterns around the outside of her eye there’s no vision.

I'm so sorry to hear this. It must be a shock for you all. I just had a look on Moorfields website. I hope this information can help in any way. Perhaps you can give them a call today?

This is the NHS and they have an A&E department:
https://www.moorfields.nhs.uk/ae

This is the private part of the hospital, not NHS.

https://www.moorfields.nhs.uk/private/eye-conditions-and-treatments/retinal-vein-occlusion/diagnosis-and-treatment

This. My now teen is registered blind/severely sight impaired (the legal definition) after losing the majority of her vision when she was 11. There should be an Eye Clinic Liaison Officer who can be accessed via the eye clinic/ophthalmologist and will be able to help your sister access appropriate support via her local adult social care service.

Agreed. They are excellent.

I used to work for a local sight loss charity. Most areas have one. The one I worked for had a brilliant resources/tech centre. We also offered peer support and emotional support groups. Hopefully there's one in your sister's area.

Please support her to contact her local social work departments Sensory Services Team. They should carry out an assessment and arrange care if she needs it and also cane training. Technology is amazing these days as well.

Massive apologies for my ChatGPT answer but I have found this out regarding accessibility using Samsung phones.

The closest equivalent to Siri is Google Gemini (and on some Samsung phones, Bixby). You can use voice commands to make calls, send messages, set alarms, ask questions, open apps and so on. On newer Samsung Galaxy phones, Gemini is generally the voice assistant I'd choose rather than Bixby. Google's Gemini help
But for a blind person, the really important feature is TalkBack. This is Android's built-in screen reader. Rather than merely taking voice commands, it reads aloud what's on the screen — buttons, messages, menus, notifications, contact names, etc. The person then navigates using gestures and spoken feedback. Google's TalkBack guide
Samsung also has an Accessibility section under Settings where you can configure TalkBack and other vision assistance. Samsung Accessibility
For someone who is completely or almost completely blind, I'd set up TalkBack + Gemini together. That combination means they can do a great deal by voice, while TalkBack handles all the things that still require interacting with the screen.
If you're helping a particular blind person set up their Samsung, I can talk you through the initial setup and suggest the easiest configuration — including how they can answer calls, make calls and send WhatsApps without being able to see the screen.

I lose 80-90% of my sight a few times a year due to what the consultant thinks is FND. It’s been terrifying , and each time I worry it won’t come back. The longest I’ve had it for is 8 days.

After the first few episodes I actually had therapy and it was really helpful once I realised the therapist wasn’t patronising me when he said ‘at least you’ve had sight so you have a baseline of knowledge someone blind from birth wouldn’t have’ and he gave simplified examples such as if he said a colour to me I’d know what he meant. At first I was irritated but then it enabled me to plan more for the times I lose my sight.

One thing you should do is help her do a PIP application asap as the money can be used towards a carer or adaptations (you may be able to get a disabled facilities grant).

Galloways (a charity for the blind) would be my first thought. Hope she is feeling more comfortable and positive once she's in her own environment again.

Sorry to hear about your sister.

I just have one small idea that might help with contacting you and other friends in the short term. Does you both happen to have an Alexa device? Or would you both be prepared to buy one? I can say to my Alexa device "Alexa call Matthew" and it would call the Alexa device at Matthew's house and I could have a conversation with Matthew without having to leave my armchair. This might help if from a distance, she could ask you to do things that she can't manage, such as booking an Asda shop or ordering something she needs online.

Talk to RNIB at head office in London.

Can you get the voice assistant set up on her phone so that she can at least do "Hey Google, call Unforgettablefire" and it rings. That way she'll be at least able to get in touch with people.

It sounds utterly horrendous though. Obviously, blind people can live very full lives but having to learn to deal with it suddenly when you've not grown up with it seems so hard.

I was going to say Moorfield[s too.

Being blind is hard to deal with, whether you’ve grown up with it or not.

Sorry for the AI explanation but there is an amazing service “be my eyes”

Be My Eyes is a free service that connects blind or visually impaired people with sighted volunteers through a live video call.
The idea is wonderfully simple:
a blind person opens the Be My Eyes app and asks for help.
a sighted volunteer receives a notification.
they have a live video call, where the blind person points their phone camera at something.
the volunteer describes what they can see.

For example, someone might call because they:
can’t tell which tin of food they’re holding.
need to know whether a shirt is navy or black.
beed help reading a letter or label.
need to find a particular item in a cupboard.
have dropped something and can’t locate it.
The volunteer doesn’t need any special qualifications — just good eyesight, a willingness to help and a few minutes.
There are also specialist services, where companies or organisations provide trained support for things such as technology, banking or specific products.

Not read the whole thread but contact the RNIB helpline. They will signpost lots of services and also help negotiate the healthcare routes she needs. She will need to get used to doing things differently and finding little gadgets that work for her, she will still be able to do the majority of things and even live in London independently but there is a whole process of adapting to go through which is tough.

I’m so sorry to hear about your sister. My father is now blind and it’s been very difficult for him. I support him a lot in terms of travelling, groceries and paying bills. I got him the largest I pad and he prefers using it to face time me with. He cannot use a mobile phone as it’s far too small! Is it worth helping her to move nearer to you all for support?

Can they give her Anti-VEGF injections? I’m having them for a blood clot in my eye.

I have no advice except to say you sound like a great sister and your poor DSis, what an absolute shock for her. My heart goes out to you both.