Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
Covid

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Utterly desperate to see sister now

16 replies

toobloodyscared · 20/03/2021 20:47

Haven’t seen her for more than 5 minutes in 13 months . She has multiple LDs and autism, and hasn’t been allowed visitors at all . She’s now having seizures of unknown cause, referred for brain scans etc, and we STILL aren’t allowed to even visit outdoors . So, so frustrated - she’s now saying she’s used to being indoors and said she doesn’t see the need to see us anymore . Aaaargh .

I don’t go anywhere - spend entire days in same tiny isolated village, haven’t been in a supermarket since Jan 2020, haven’t seen a single friend or relative or been out beyond the very basic essentials - how can I possibly infect her?

OP posts:
hangsangwitch · 20/03/2021 21:04

Does she live in a care home? If so, you are legally allowed to visit and the home must facilitate that.

If she is in supported living? If so, the law is a bit different and doesn’t cover them. My brother lives in SL and I wasn’t getting anywhere trying to arrange a visit with the managers as they are completely over cautious, quite understandably. I called the area manager last week and explained that I had LFT twice a week and both of us had had the vaccine over a month ago and that I really needed them to look at things on a case by case basis.

Anyways, I saw him today! Did the LFT and showed up as arranged with the negative result and spent an hour with him. It was great.

I know it’s really difficult but maybe it’s time to get really assertive and make demands.

Strangekindofwoman · 20/03/2021 21:05

I think you need to insist you can get to see her.

WitchesBritchesPumpkinPants · 20/03/2021 21:08

@hangsangwitch. That's lovely for you. Did he enjoy your visit? Or was he a bit freaked out?

@toobloodyscared. I'm sorry, that must be SO SO difficult. I agree with Hang you might need to get a bit pushy. Good luck & I hope your suster stops having the seizures x

Original poster
toobloodyscared · 20/03/2021 21:14

@hangsangwitch

Does she live in a care home? If so, you are legally allowed to visit and the home must facilitate that.

If she is in supported living? If so, the law is a bit different and doesn’t cover them. My brother lives in SL and I wasn’t getting anywhere trying to arrange a visit with the managers as they are completely over cautious, quite understandably. I called the area manager last week and explained that I had LFT twice a week and both of us had had the vaccine over a month ago and that I really needed them to look at things on a case by case basis.

Anyways, I saw him today! Did the LFT and showed up as arranged with the negative result and spent an hour with him. It was great.

I know it’s really difficult but maybe it’s time to get really assertive and make demands.

She’s SL yes . They’ve said no visits at all, said it’s too risky - she’s not even allowed to be close to her flatmate - told no physical contact with anyone unless an emergency . She’s also been told she’s to bleach the entire flat twice a day ... so she’s become quite paranoid about germs sadly . Has stopped speaking to DM largely (who has her own disabilities) and has stopped socialising/contacting friends at all . A year ago she was travelling independently to visit mum once a week, going to gym, coffeee shop, newsagent alone . Now she’s spending much of her time in her room with curtains shut . Totally deskilled as is Mum . It’s a bloody nightmare . Can’t work out what’s causing her seizures either, carers said they suspect anxiety but I used to work with neuro patients and very aware it could be lots of other, very concerning things .... so frustrated .

I might ring social work again Monday, they said hands are tied but beginning to think they need to make an exception .

I’m so glad you were able to see your brother Flowers, I’m so glad you had a great time x x

OP posts:
JanFebAnyMonth · 20/03/2021 21:30

Who on earth's told her to bleach everything twice a day??

DudeistPriest · 20/03/2021 22:18

Hope you can get this sorted out OP. I am upset for you and your sister.

Dobbyafreeelf · 20/03/2021 22:33

Do you have any authority over her care? Power of attorney ect?

It doesn't sound like a healthy environment for her. It's concerning how many people are now so frightened of normal everyday life. Supported living should be just that supporting people to live as fulfilling a life as they can. They should not be deskilling her. I fully understand that it has been tough to do through the pandemic but it's so important.

hangsangwitch · 21/03/2021 10:44

This is awful! Your sister is in SUPPORTED living, they are supposed to support her life, not completely deskill her and damage her mental health. I really feel you need to escalate this to her social worker now.

DumplingsAndStew · 21/03/2021 12:44

Oh this is heartbreaking to read. Adults such as your sister have been severely let down throughout this. Surely carers should have continued working with her on preexisting skills and attempting to introduce new ones. I really hope you get some good news soon Flowers

@hangsangwitch Am delighted you got to see your brother. I hope it was a positive experience for you both Smile

LouLou198 · 21/03/2021 13:20

This is really sad to read. I cannot see why she is being told to bleach everything, seems a bit over the top. How old is she? Has she been offered the vaccine yet? Are you able to meet her in the grounds of the SL accommodation? I think speaking with her social worker is a good idea.

Davros · 21/03/2021 13:28

I'm am right now having my LFT to see DS who is severely autistic and lives in a care home, albeit only for people up to age 25. We have visited on and off over the last year. This is our second visit this year. I don't see why you can't go. I've got friends with DCs in other cate homes and SL and all have been able to see them on and off and under certain conditions

VerityWibbleWobble · 21/03/2021 13:35

Good grief this is appalling.

As asked above do any of you have POA?

Original poster
toobloodyscared · 21/03/2021 13:55

I don’t have POA no; was told it wasn’t necessary but I’m less than sure. Social work said they wouldn’t support it - and carers said it would be more trouble than worth . So I think the council hold that for her or something? I’m not sure . It is causing an issue right now as she’s for example, allowed to make her own choices re seizures - so they’ve dialed 999 each time, ambulance say sister needs seen in A&E and then she refuses so isn’t getting seen - we have absolutely no idea whether she’s epileptic, if it’s eg NEAD, or what .

Apparently the cleaning is completely necessary as high turnover of carers and flatmate is shielding - but I’m not sure how much of that is instigated by dsis (who is terrified of COVID) .

She’s 27.

Accommodation’s just a wee flat unfortunately, so no grounds - and she now won’t use public bathrooms, or tolerate the thought of using anyone else’s toilet, or use public transport, or go far from home - so can’t see her outside .

It’s so difficult, she says she’s happy but then she’s being aggressive to carers, having seizures and not eating well - so it doesn’t seem she can be .

I’ve been in contact with social work quite a bit this last few weeks so will give them a ring again, see if there’s something we can come up with between us - even if she needs a lot more support in that regard .

I’m beginning to think she’s going to need moved anyway, if she’s having seizures she’s only supported during the day witu an emergency phone number - if she’s epileptic or something she’s going to need staff 24/7 surely (although her carers told her that won’t be happening, helpfully)

OP posts:
Bluebellwoods1 · 21/03/2021 14:25

Although there is not direct guidance for SL and visitors , they should be offering a visit and asking you to provide proof of a LFT , prior to your visit .
If your sister does not wish to meet outside they should make provision for you inside with people wearing PPE.
I would ask to see the policy , I would also ask for a Learning Disability Nurse to be allocated to support with seizures / medical advice via the Social work Team.

Davros · 22/03/2021 13:56

It's not POA for someone without capacity, its Deputyship. It's quite a rigmarole, I haven't done it. A friend of mine was part of a campaign to make it easier but I don't know what's happened with it in the last year

JanFebAnyMonth · 22/03/2021 17:50

Sounds an awful situation OP, you must be worried sick. Have you thought of ringing an organisation like MENCAP for advice? They were very good last time I rang their advice line.

New posts on this thread. Refresh page