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Original poster

Anyone seen this piece on Riven in the Guardian?

164 replies

LindsayWagner · 10/06/2011 10:27

It's here.

Reading again the details of her daily life reminds me a) what an astonishing woman Riven is and b) how ashamed I am to live in a country which can treat its most vulnerable members with such disdain.

I'm so glad the Graun are following up on her and Celyn's story. She says she's tired of campaigning - of course she is. I can't imagine where she found the reserves of energy in the first place - imagine it's similar to people finding superhuman reserves of strength when their lives are under threat.

There seems to be a bit of a lull in coverage of these issues at the moment, while everyone waits for the full effects of funding cuts to become clear. But at some point the gob-smacking, almost-inconceivable reality - that the cuts are being carved out of the daily lives of families like Riven's, who probably thought their lives couldn't get any harder - will be impossible to ignore. I really, really hope we don't let this one go.

OP posts:

Glitterknickaz · 13/06/2011 16:24

I'd have a crack at it but I'm a leeeetle too far away

Peachy · 13/06/2011 16:27

If your Dh can't mend the PC Riv (time?) there's a fair chance my one can so let us know

Riveninside · 13/06/2011 17:14

Sadly dh knows stuff all about computers. Even less than me!

celadon · 13/06/2011 18:38

This reply has been deleted

Message withdrawn at poster's request.

hobnobsaremyfavourite · 13/06/2011 20:30

Riven I cannot begin to imagine how worn down and exhausted you must be. I have seen the misery that cuts to care provision can have at close quarters. For many years I worked as a carer for a man with MS. I did night sits which allowed his wife to get a decent night's sleep twice a week. He also had sitters which allowed his DW to care for their DD and to carry on working ( partly from financial necessity and partly to save her sanity.)
All of the sitters were paid for by ILF. The last 2 years of my friends life were spent wrangling with the authorities as they wanted to stop the ILF and this would have meant that my friend would have ended up in a nursing home. Watching the hell that my friends went through just to maintain a normal family life (including the authorities threatening a POVA order against my friend just so they would agree to the withdrawal of the ILF and a change in the funding arrangements and my friend dropping to a size 6) was utterly horrific.
Sadly my friend died whilst care arrangements that would have been partially satisfactory were still being put in place. Coping with a husband who was dying in his early 30's and needed huge levels of care was horrific enough but having to fight a long and nasty battle just to maintain her husbands care was just beyond cruel. I cannot begin to imagine how awful things would be if he were still alive in the current climate.
Riven I wish I could help. Sadly my nursing experience was with adults and I am probably too far away. I wish I could find you a local paediatric trained local me if you know what I mean.
Sorry if that's a bit rambling.
Oh and my friend found the Jeremy Vine show and the Guardian most helpful

Riveninside · 13/06/2011 22:26

Just reading that 49% of carers are disabled themsleves. Often vaused by caring. My fractures in my spine and slipped disc have been caused by lifting dd and turning her at night in the ,ast week ive gone from just pain to being unable to even sit wihtout agony. So called 'bad back'. I am now facing a spinal fusion operation.
I read about a carer who had a stroke in her 30's bought on by the stress of caring.
We need support. We are not scroungers. We save the taxpaywr £110 billion a year.
But we get £55 a week and the sheer hell of battling for help.

Glitterknickaz · 13/06/2011 22:49

£119 billion I read

Peachy · 14/06/2011 15:49

Riv shall I ask Dh to pop over and see what's up with it then? Must be time for a cake and chat session soon anyway. Busy next 2 weekends, weekend after? FB me if you want us to have a look X

Riveninside · 14/06/2011 16:22

What date is that? Would love to see you again :)

Yukana · 15/06/2011 08:27

Hello Riven, I've read your story and I know this may sound old, but you are an amazing person and your strength, not to mention the amount of love, for your children is inspiring. :)

Also, you lucky woman, meeting Depp in the street! I've only met Nicholas Hoult in the street in Bristol, he was in About a Boy and Skins. Though he smiled at me and I sort of dissolved.

Riven, what can we do for you, aside from contacting our local councils/MPs? I feel like I want to do something to help, but I'm ashamed to say I don't know where to start!

I also live around Bristol.

EightiesChick · 15/06/2011 09:07

Best of luck with it all Riven.

In terms of what anyone can do, I would be happy to write letters etc but was also interested in the idea of the link family (mentioned in the Guardian article) as something I might be able to do. Does anyone here do this or know how you go about it? I'd done a quick google but it all seems to be area specific and nothing was coming up for my area.

Riveninside · 15/06/2011 10:03

You should come to our MN meetups yukana

Im guessing to volunteer to be a link family you contact the childrens disBility team at yoir local council. They all have one but with different names.. They might want previous experience but theres places yiu can volunteer to get you started.

IntergalacticHussy · 15/06/2011 11:37

i didn't think it was possible to hate david cameron any more than i already did. I was wrong. He's a bastard, exploiting his own son's memory to win the election and then betraying it. I don't think it's possible to get any lower, i really don't.

Glitterknickaz · 15/06/2011 11:44

Intergalactic... I don't think he's ever directly done that, Francis Maude has though....

Yukana · 15/06/2011 12:04

Riven I'd love to, although I don't know anything about the Bristol meetups. It may have to be after I give birth though, 32 weeks at the moment! :) How are you feeling today, anyway?

Intergalatic Whilst I do feel David Cameron's decisions are odd and wrong especially considering he knows what it's like to have a disabled child, he has admitted he doesn't know just how harsh that reality can be, as he had plenty of money to gain the help he and his son needed. Apart from that, David Cameron is making himself out to be a complete wanker, and needs to listen to this countries cries for help, including the minority groups, instead of basically ignoring them.

I find it more sad that whenever I read about or watch what the government has said or done, I find myself thinking 'What have they done wrong this time?' and 'Who have they wronged this time?' It shouldn't be like that.

Peachy · 15/06/2011 13:33

Riv will check calendar and get back to you ASAP.

Froend hs been told today her adult son can;t get ESA> he has AS and agoraphobia (related). Last time he left the house was the police fording him out at the behest fo truancy support, how she is supposed to get her 6ft son out of the door each day whilst he hits her is beyond me. She's 5ft and petite fgs. but apparently that's the solution.

Okaaaaay.

amicissima · 15/06/2011 14:07

This reply has been deleted

Message withdrawn at poster's request.

c0rn51lk · 15/06/2011 14:13

peachy the police actually forced him out? How awful.

Peachy · 15/06/2011 14:18

I know C0rn, she wasn;t even tehre, it was only as her mate went past and called her that she knew to to rush home

Peachy · 15/06/2011 14:20

Ami if central Government ringfenced the appropriate budget then it would be a massive step forwards.

bullet234 · 15/06/2011 14:22

Riven, does your dd still occassionally go to the respite centre? If so, would you object to the tape recorder being placed there? Your dd could listen to it and activate it whilst she was there, but it would also be for the use of anyone else attending as well, when your dd was not there.
Or what about keeping it at her school, so she can operate it a few times a week, out of lessons and then when she leaves the school the school could either keep it, or sell it.
The ideal thing would be for your dd to have the tape recorder at home, but I also know that pride and dignity prevents you from accepting this.

Yukana · 15/06/2011 14:45

Peachy I also suffer from agoraphobia, which is related to my eating disorder, anxiety disorder, and depression. A lot of people sadly don't understand what it's like to be paranoid of going outside, for me it's the worst feeling to be outside feeling like everyone is watching me or laughing at me and that they all secretly think I'm fat. It makes me feel like I want to claw away at my skin. It's like I can hear a voice inside my head that says 'You'd be happier inside'. Of course though, as it's mental, and I choose not to show how freaked out I am when I do go outside, it's quite hard for those around me to comprehend.

Peachy it's disgusting that they'd try to force him out. The poor boy, I hope he is all right.

amicissima · 15/06/2011 15:00

This reply has been deleted

Message withdrawn at poster's request.

Peachy · 15/06/2011 15:03

Of course it's not simple

But they can't award non ring fencved fudning and then claim it's all down to the LAs. they have to take their share of responsibility. their decisions were linked to the outcome.

Yukana invisible Sn is hard isn't it?

amicissima · 15/06/2011 15:04

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