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.

Can she make a GP appointment and ask for help there? They should know what is available.
citizens advice might also be helpful.

im so sorry this has happened.

Goodness, that's a huge shock for your DSis, did the doctors not give any referral for support? I have no experience of this but I'd do as much as I could to identify organisations that can support, as well as any assistive technology she might be able to use immediately. RNIB would be my first port of call.

I’m so sorry. This sounds so upsetting for her and everyone. The RNIB comes to mind as somewhere that could maybe help?
their helpline is: +443031239999
www.rnib.org.uk

This person has seen an ophthalmologist - as a GP, there isn't much I'd be able to add, I would expect better communication from the ophthalmology team and would advise that she goes back to them.

There should be a blind club or a sensory centre somewhere nearby hopefully. They will be a good source of advice and support. There are lots of gadgets and technology to help with the practical side and hopefully they will help with the emotional side too. Plenty of totally blind people live independently but there will be a period of adjustment in sure.

Thanks for the replies. It really is horrible. I’ve emailed the rnib but haven’t heard back from them.
I’ll get my dm to ring her gp, dsis can’t even make a phone call now so dm has to ring her friends for her to tell them what’s happened.

She went to the emergency eye clinic straight away when it happened. They diagnosed, tried treatment then said we can’t do anything else but they referred her to the stroke unit with it being her head.
She went there yesterday and bloods, ecg were normal.

I would see if her London GP would give her a referral to Moorfields eye hospital for a second opinion.

She needs an urgent social care referral to adult social care in her own area for an assessment and to get support. There should also be a low vision service locally that her GP can refer to. The Opthalmology team (I take it this is your local team) should send a discharge letter to your GP and also refer her to her local Opthalmology specialist service if necessary. In my Dad's case once he was designated severely sight impaired/legally blind Opthalmology discharged him however the low vision service can still provide support, do a home visit and suggest suitable vision aids.

I am so sorry to hear this. It sounds devastating.

I would also think a referral to occupational therapy would be useful. They can give advice on adaptations and help to learn new ways of doing things.

I second Moorfields and the RNIB.
Also, just a thought re phone calls - can her mobile be set up for voice activation for a few major people she might need to call e.g. DM, doctor, you etc? I’ve seen blind people use this successfully.

How awful OP. You could start looking into adaptive technologies for blind people that will allow her to use her phone etc. Follow some blind influencers on social media. Lucy Edwards is amazing. Can you start looking into the possibility of a guide dog? It may seem quite early for all this but helping your sister know that there are ways to gain back her independence may help her.

Phone her local adult social services team and request an urgent assessment. They should have sensory Occupational therapists too.

I had a friend who was totally blind and she was a whizz on her iPhone. There are loads of accessibility settings. Maybe find a YouTube video to help with this.

Moorfields?

Friend of mine went blind overnight and got a lot of help and support from the council or social services. Initially she had someone visiting daily and helping her in the house. Agree phone technology is great now and the rnib will advise I’m sure about that sort of thing. My friend is on Facebook for example.

There will be a local/regional sight loss charity in her area. Give them a call. They will have supported many people with all types of sight loss and will be able to help her through this situation. Most importantly knowing that while a massive change, there is hope. Connecting with others in the same situation will help her.

Radio 4 has had some brilliant series on being blind / severely sight affected. They highlighted the amazing support available from the RNIB & elsewhere & showed how people can still life a normal life with the tech etc available today.

Does she work? Whether in work or not there will also be financial help / support available too.

This is very sad. My friends flatmate went blind in our 20s. He hid it and I remember her saying he was acting really strange and she thought he had an alcohol problem due to falling and not being able to walk straight then eventually finally he had to acknowldge it and he went home also up north for a long period while he learnt how to cope and adjust for what is essentially a new life. I remember her saying he was very depressed to start with.
i know he did get a lot of help from charities and services eventually but it took him a long time to come to terms with it and accept help.
I think contact charities and local services and write to her gp, explain she is not acknowledging it and has no help and lives alone.

God OP that must be so shocking and so hard for her and you. She needs to contact social services so they can assess her needs. Good luck I hope she is able to get the support she needs.

Don't do this. She is blind not incapable.

You need to support her accessing services, not take over.

Losing sight is devastating, being treated as incapable just makes it worse.

Did you miss the part where she can’t see to make a call?

She needs an urgent referral to the eye
hospital local to her, the eye casualty should have done that, if not you can ring and ask.

They need to arrange for her to get a CVI registering her as severely
sight impaired / sight impaired. There should also be an ECLO (eye clinic liaison officer) who sorts out referral to social services and other sight loss services near her.

This, I would be knocking on every door including those at the hospital on next steps for support.

What she needs is support to help regain some independance and there is no reason she can't with the proper support.

Hi OP, I lost the majority of my sight 7 years ago so can offer some advice on the practicalities.

Your sister must see an ophthalmology consultant to be registered as SSI (Severely Sight Impaired/Blind).

She may possibly already be registered as SI (Sight Impaired) which is my current status. She needs to have a full conversation so she understands if there is any treatment for her condition.

TBH I'm horrified at the shoddy treatment she has received so far. She needs help and no professional appears to be guiding or advising her.

Once she has been given a Certificate if Visual Impairment it will open up financial doors to help your sister, including higher rate PIP on both levels which will give her just over £10,000 in support a year. This money is not means tested and can be spent on carers, cleaners, home adaptations etc etc.

When I lost my vision my local Sight Support team were really helpful with support and advice. I am also registered as Sight Impaired with my local council who offer support for home adaptations if needed.

I still work as Sight Impairment is a protected characteristic so my employers were happy to make reasonable adjustments for me.

Once again there is financial help available from the DWP via "Access to Work" which often means people get to stay in employment. I receive help with taxi fares to and from work and my employers received help with computer talking software and huge desktop maghifiers.

More importantly your sister will need a lot of emotional help. Honestly, when my sight went I cried every day for months - I'd gone from leading a normal life, driving a car etc etc to being dependent upon others for most things. Gradually I adjusted and I now lead a busy life with support from others.

My heart goes out to your sister but she needs to get the practicalities sorted (such as the Certificate of Visual Impairment) which will then open other doors of practical, emotional and financial support to her.

Most eye hospitals have an ECLO (Eye Clinic Liaison Officer) who is there to offer support to patients like your sister.

There are also charity websites out there such as https://www.bemyeyes.com/ which your sister may find helpful.

xx