Anyone seen this piece on Riven in the Guardian?

[LindsayWagner]

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.

Good to see you back riven but I am sorry to say that Jonny is already taken as I bagged him years back so hands off ladies, he mine, all mine and i don't share

call yourself fans and you haven't even mentioned his birthday today

I know its his birthday. I have posted myself to him and am typing this from a postbox.
I need cheering up, my back has 4 fractures in it from lifting madam gingery :(

If I can get hold of Mr Depp for you and agree to wear a nappy in Downing Street can I sniff him? Pretty please?

Great article, well done you and Mr Riv and sorry for divebombing you this morning!

Riven he isn't at his home, he's on his way to mine

Hope your back improves soon.

yep different councils

After eyars of fighting tehy ahve accepeted we cant get two kids to two schemes at the same time so that's a battle won (taxi for one child, we are happy to take other one).

I have never met a local person who gets a short break; even my mate whose child has GDD, ASD and is blind only receives help from the blind cahrities. They refused him any residential care at 16, said the carer has to be abusing or dying.

Riven - the article today made me cry on the train on the way back from work. You're inspiring and fantastic. Your daughter is very cute as well. I hate what this government are doing especially after Dave's 'nice guy' election campaign. I've been lobbying my MP about the cuts - not that I think he cares much. But if enough people make enough noise they will have to take notice at some point xx

So sorry about your back too. Get better, xx

I seem to remember Dave saying I'm the PM I can sort this when it came to Royal street parties yet he's powerless to do a simple and very dignifying thing like making sure disabled children get the nappies they need....

We def have to do something to keep this at the front of his mind, but I fear nappies on heads will give him and media chance to dismiss us. We need to bring as many people with us, and I'm not sure how many others will join. Throwing nappies as they throw shoes in Iraq is probably taking it a bit far though.

I'm thinking we need a simple dignified act lots and lots of people can join up until the man does something.

What sort of person (training of them) is needed for the night care? It would be relatively cheap to have a live in au pair who shared C's room and then R could get a full night's sleep every night which I suspect (remembering my own years of sleepless nights which will have been nothing like as bad) would make a massive difference. What's an au pair's weekly cost?

(Can understand people not wanting to accept money although I know mumsnet posters would willingly helps in lots of ways)

Nurse level training xenia. Who can do cpr. I cant afford a weekly au pair who would be willing to be awake every night.
Plus, for some reasons, employees are not allowed to do lifting and such that parebts do all day every day. To save their backs.

But its not about me. There are thousands and thousands of families struggling with little help, no sleep and major loss of income due to the responsibilities of cari g (remember, carers are mainly women and often give up work to care for elderly parent or sick sibling or spuse or disabled child)

We need a decent system of suport. If we all put our cared for relative or spouse into care the country would go bankrupt. We do £110 billion of unpaid care a year. Carers will continue to do so but just need some supoort!

Okay, so it would need a nurse level of trained person. A Phlkippino one? There are lovely ones in London, all congregate at mass on Sundays. They
I was just trying to find a personal solution in that case. That person could be up all night but be free all day, have free board etc Of course there is a cost to that. Could we train more of the unemployed into caring and then force have those who are able but on benefits who cannot find any work to provide that type of care in return for their benefits. They aren't doing anything all day anyway so they could sleep in the day and do night care.

We also as women need to ensure we don't get to be the one lumbered with care all the time. Make it the men and then people might effect change more easily. If 90% of the time it was man doing caring then may be more notice would be taken. Where women earn much more than men they don't end up being the one doing the caring on the whole.

Yes, I know about lifting as we had some of those issues with my father. At one point there needed to be two people there to do that.

Im not sure what you rpoint is xenia

Xenia, whilst I appreciate you being able to find a solution to a particular case, am not sure forcing someone to be a "carer" will result in them being a "caring" person and one who can provide Riven and her family with the highly skilled care they probably need.

Would anyone trust their elderly mum or dad, maybe frail and. Abit forgetful, with a forced carer? Who was on work for welfare?
Or woild you rather trained, decently paod professionals care for the vuneralble? Cos one day that will be all of us. Elderly and probably vunerable.

Quite K999

Dh would be a terrible FT carer, when he does anything- reads, watches TV- he drifts off into an intense world of his own and simply does not hear the boys. He does not wake at night (genuinely; used to work nights and slept through the alarms when we had a mini fire). He is a joy to be amrried to 9well, mostly anyway!) and is loving, caring, an excellent father but at heart absolutely a techie.

OTOH before the boys I worked in nursing, care and the charity sector including being employed in an LD unit for a time.

No brainer frankly.

And yes sleep matters: last night I had a glass of wine and slept for 5 hours straight, DH just stayed awake.

This morning I was lively, laughing and bouncing around the living room to Cole Porter feeling I could take on the world.

Sadly Dh staying up broke ds1's routine and I have a bruised arm and leg again.
Bollocks.

Riven, your quotes in that article were really excellent.

I know. It's a really difficult issue. On most of the planet relatives who love people care for them. That's the culture in most places. The welfare state is the rarity. Usually it's daughters in law (because China and India and Japanetc have been very very sexist) who get left to look after the grandparents. Probably most of us do want to look after our own dependents. The R situation(as is that for many people in similar situations) is obviously terribly difficult and those of us who have never been in that position can hardly imagine it. If I were I would be in the cameron position and whilst it woudl still be hard I would have the resources to pay for the help needed.

It isn't just a question of funds either. Even care homes prepared to pay for staff don't always get great people to do it. I have reasonable knowledge of carers because of my father who was relatively lucky..

Pause. I went off to find some statistics. Ever the optimist I assumed numbers of disabled children were reducing. I was wrong. "The number of families recognised as having a disabled child increased from 700,000 to 950,000 between 2004 and 2010". Whatever the position on children the position with the elderly is much much worse and going to be much much harder. It's easy to live a gorgeous girl like Riven's daughter. it is harder to like us all when we're 90 and doubly incontinent and probably very grumpy. Either way find good people to care and help is certainly not very easy but we need to look harder at what can be done.

I hope when I'm old I can be competent to the end and I'm trying to ensure that by looking after myselfb ut there's no guarantee. I am not the sort of person who would choose a Dignitas end (the Pratchett film is tomorrow night) as I think my ability to be joyful is related to my thoughts and I can have pleasure in those thoughts even without most of my faculties. I've 5 children so some may want to be around to help. I am seeking to earn sufficient to ensure I should be okay. No, I might not want someone forced to be there caring for me but if it were a choice of that or having to go into a home or not being able to get my food and I just need soeone in twice a day to do XYZ I expect I could live with it but as you say some people have complex health needs that even if a mother can learn to deal with a carer may not.

We've got 3 kids with additional needs.
We don't actually qualify for respite because our kids don't check certain boxes.

Good that, eh?

Riven, just gimme a time and date and as long as DD isn't having her heart OP I have some GORGEOUS fixies we can all wear on our heads....

Hello Riven,
I read the article on Friday, and thought it was great.

There is little that I can do from here, although I would love to join a MN flash mob, so will content myself with writing to MP etc. Thanks Cat64 for the list, will work my way through that.

While I can see that throwing money at the CD player problem would make us feel better, we can do much much more by campaigning for the cause. And we can do it, not just for Riven and her DD, but for all people who are struggling.

where do you want me?

What a brilliant article! You are an excellent ambassador for families living with disability, Riven (also pleased to see you back and :( to hear about your computer)

I hope your back damage isn't too movement-limiting and something is being done about the fractures - are you having to wear a back-brace or something?

Times like these remind me of how vehemently I loathed the Tory govt prior to Blair getting in - all 18y of them. And yet even Thatcher was never this bad!

I was pleased to read most of the comments on that Guardian article were in general agreement with my sentiments too - and almost wish I was still in the UK to try and do something about it. Still, I guess I can still add my name to petitions or email people even if I'm not a UK resident any more.

Riven - would you at least let someone mend your 'puter for you? If anyone knows anyone who can? I don't, sadly but someone might.