Riven headline on bbc1 just now

[compo]

At 6.45 she was the first item on the BBC news

R3 covered it in their two-minute news bulletin early this morning.

Wasn't one of the key things with this the fact that Dave Cameron actually met with Riven during his campaigning and promised he'd make things better if he got in?? And actually that's the last thing that's happened?

I think the issue is a cross-party one and regardless of who's in government needs to be changed so that people like Riven get the support they need.

Breaking news on sky news app too

Local Authorities get their funding from central government though. It's the cuts aimed by the ConDems at the grant funding to local authorities which will result in large scale cuts to some of the most vulnerable people in society. This is just a little bit of accountability for Mr Cameron. If he wanted to protect individual groups then he could have done so, but he doesn't want to to be associated with the cuts so he devolves that decision making to LA level.

BBC London despite the fact she is in Bristol!

I really hope that this puts some pressure on DC to do something rather than by tomorrow becoming old news and no longer a 'story'.

Yes, this is exactly the kind of service that we were all promised would not be affected by cuts, and look what's happening. That is where DC and the government are being disingenuous. High time there was more debate about this. Perhaps a few folks at Goldman Sachs could be interviewed and asked if they'd be willing to chip in..

Driving to do my horse at 6.40 this morning and nearly drove off the road when Riven's name was mentioned in the newspaper round up on Radio 4 Today. Well done Mumsnet!

All I could think of this morning was finding out what coverage there was, hope it not only helps Riven and the beautiful Celyn but highlights this problem for all the people it affects. Our army of unpaid carers need looking after.

huffy (LOVE the name btw) has expressed what I was trying to say far better!

It is a cross-party issue and needs resolving regardless of who is in power. To focus purely on the politics of the case is to take focus away from the whole point - that families with disabled children (or adults for that matter) are not being supported.

Its on the BBC webpage now too. Even their story made me well up in tears of frustration for poor, brave Riven. Lets hope something is done.

DC has said he understands parents with SN kids, lets see how real that is.

I agree with Shiney and Xenia- I hope that this can have a positive impact for all carers, parents with disabled children or children/partners looking after the elderly. Even if they have not met the PM and even if they are not on MN!

This is a mainly a Local Authority problem, though it is right to call the current Government on it.

the service should be provided by the Local Authority - but they are being heavily squeezed by budget cuts.

It is very short sighted not to support carers because in the long term care at home is the best and cheapest option normally.

But when you have the public screaming at you about not gritting roads, and not collecting rubbish then maybe the relatively silent carers seem a good target for cuts.

Without a major reassessment of public funding this isn't going to get any easier sadly.

And in the mean time individuals are pushed beyond their limits.

At the moment presumably they know most elderly couples and parents with young and indeed adult disabled children love them enough mostly to cope however bad things are so that in practice most of the threats to put them into a form of care are not carried out. Thus the economic calculation is that we can just about afford respite care or help at X level but not more.

However given the massive increase in the elderly (this is more of the issue than disabled children) coming up and the cost of care in homes (although that could be funded by the person's house value I suppose) there may come a piont when it's cheaper to fund caer at home.

Wasn't there some plan to give the person their overall cost of all benefits, services, etc etc and then they choose how they will spend X a year on what they need rather than the LA saying you get X hours of respite, 4 nappies etc etc. Power to thhe people, a very Conservative philosophy. I don't have any involvement personally in the issues of the disabled or elderly but I thought I had read that. That woudl seem a bertter plan - direct cash to the disabled person and they choose how it is spent rather than hand it to XYZ local authority so they can pay their disabled rights man £60k a year and their CEO £150k and have trips to Trinidad on "visits" etc

The crazy thing is that if your child has been made disabled by an avoidable hospital error and you can prove it, you are assessed as needing absolutely loads of help - in some cases, millions of pounds worth. I know parents who have 24/7 care for their DC's, massive, expensive houses, a care manager....

yet if, like most of us you cannot contribute the disability to human error, you get the most paltry care package in many cases, despite the same level of need or higher need. It is not the first time a parent has said 'I can't do this any more. Please take DC into care', and it won't be the last. I know children who are costing the state big time because adequate help wasn't provided.

Xenia, you mention distressing cases of violent people with Alzheimers and I agree that it would be great if their issues were highlighted. Don't forget, however, that some disabled children and adults are also violent and display much the same characteristics as people with Alzheimers in the most challenging stages. Their parents have to deal with physical attacks, trashed houses, no social life, nappy changes, sleep deprivation etc., etc., and often they start caring in their 20's or 30's and continue for two decades or more

Personalised budgets are already happening in adult Learning disability services. It's an emerging thing though and a budget is only good enough if you can buy adequate services with the money you get, i.e., in amount and quality. The most challenging people are often missed out

Carers make up a large group of the voting population.
This story should be a catalyst for a mumsnet campaign and should not be allowed to fall by the wayside.
I am hopeful for Riven and her family that the exposure will bring her what her family need.
But her need will continue as does the need of many other carers (of both children and adults).
We need to mobilise ourselves and continue to lobby.
Mumsnet - it is your duty to use the success of yesterday to continue to highlight the plight of many families.

In the newsagents this morning I saw the front page of the Mirror, it has a huge pic of Riven's daughter, but said her name was Holly?

I beleive Holly is the English version of the name.

I am a mum to a disabled daughter and my dad has just seen the lady on the news and rang me straight away as I have similar problems. Myself and husband have 8 children 1 of which is my gorgeous 12yr old daughter Georgia. Georgia has bronchiolitis obliterans after contracting adnovirus virus type 7 when she was just 3wks old she was oxygen dependent the first 18mths of her life. We were advised tot seek the help of a specialist at alder hey childrens hospital when we had our 1st appointment I was not expecting to find out he condition had progressed and scared her lungs that much that the bottom segment of her right lung had completely collapsed and would never work again and in his words it would act as a focal point for further infections. Georgia went on to get a secondary condition called bronciectasis which scarred her lungs further. With a lot of treatments and having a port a cath fitted into the top right side of her chest Georgia started on intensive iv therapies she was admitted to hospital every 12wks for 2wks at a time this has continued throughout georgias life. She also has physic twice daily and takes inhaled antibiotics daily along with inhalers nebulisers and oral antibiotics 3times a wk. With the treatment Georgia has remained stable. Last year Georgia had a reaction to her iv antibiotics so the decision was made to use iv therapy as required. She also wanted to start attending a cheerleading group as you can imagine I was so apprehensive but was assured by her teacher she would not allow Georgia to run around instead she would be used in the stunt routine which Georgia absolutely loved for maybe the 1st time in her life she was able to feel like a normal little girl. The cheerleading sadly came to a stop when she left primary school and since she has suffered a number of set backs with different bugs growing that could potentially be very harmful such as pseudomonas. She gets good days and bad days. We try and focus on the good but seeing her on her bad days breaks our hearts. Georgia was receiving high rate disability and mobility until nov 2010 when it came up for reapplying. I had received a phone call from dla asking further information the man asked about georgics cheerleading and I explained he then stated I had not put a distance on the form of how far Georgia could walk I explained that the question was extremely difficult to answer because somedays she is breathless getting to the toilet situated upstairs. His reply was I'm not talking about going upstairs I only want to know about a flat level surface. I tried explaining things again he then said can your daughter walk the length of a 100m track. I replyed that maybe on a good day and throughout summer months yes but she would have to stop to either have a rest or to take inhaler. He then told me if that is the case he didn't think she would be getting dla anymore. Since then Georgia was turned down for any dla I have had my carers allowance taken I have now been told they will be taking my income support away next week. I have appealed the decision from dla and I am awaiting a date for tribunal which can be up to 6mths motability have been a great support and allowed us to keep our car for now. I have now filled in forms for child tax credits. And currently awaiting to hear back from them. But as far as any money for myself and husband well we are unable to claim anything. I had a interview at the local job centre where I was told to apply for job seekers allowance but because I refused to lie on the form and state that I am looking for work they said they can not help me!!! Now I will have my housing benefit revoked my council tax revoked free school meals for my children. I don't see how I am going to last 6mths I am not a benefit scrounge in the slightest and believe everyone that can should be working. I donate any spare time to doing charity and community work setting up groups to apply for grants to better the lifes of others and provide free activities for children in the community. But now I'm in a situation where I can not provide for my own family. I have become depressed. And often find myself crying at the slightest thing. I'm so worried as to what is going to happen next I just wish some days I could close my eyes and not awake but then I have to carry on for my children who is going to fight for them if not me.

As a Mother of a eleven year old Disabled Child I would like to say how much it means to me that people care about Parents like us and our Children. I feel that as a Parent of a disabled Child we are under so much pressure and stress, I personally feel that at all times I am only just about holding on, the under current of fear for the future, exhaustion, desperation and struggle.....I am sure takes it's toll. I cry too easily, have had to walk out of school functions because I know I will cry.
My family have not been on holiday for six years, and that was for two nights 17 miles away from us. We dont go on days out, we dont eat out. Money is tight, I am 17,000 in debt. I dont work, cant find care for school holidays and before and after school.
My Husband works away from home- only job after being made redundent, he is with us two nights week.

I felt that we were under enough pressure before this awful deficit situation. With day centres for the Disabled being shut down, the future is an even greater cause for fear, councils not offering as much help, and there was nt enough before the cuts.........now we understand that the Disability living allowance is to be redone, with 20 percent less people to receive it, if the plans succeed. It is being suggested that because Disabled children receive some care at Special Needs schools, there should be a reduction in the amount of dissability living allowance that should be received.....
I and other Parents had really hoped that because of David Camerons personal knowledge of being a Parent of a disabled child, we might come to see changes. If I give up my Son, because I am pushed to the limit, the state will then have to pay 200,000 plus for the care of him. We are only human, we can only cope with so much, and quite frankly some of us are at or very near breaking point. Our life experiences and life chances aare very, very much altered because of our childrens disability. I love my Son, I dearly do. I just dont feel the Government cares. thankyou Mumsnet people for caring.
I could weep.

Read it in The Times today.

Go Riven

I do believe Riven will get the help she needs now, and quite right too, if so.
There must be thousands in her situation.
I think it's astonishing how hard she works and how fiercely she's trying to do the right thing by all her family. Such a toughie - I couldn't have got as far as she has if I'd been dealt the hand she was.

Is there a possibility, do you think, that the highlighting of Riven's situation MIGHT make DC realise that more must be done for carers at home?

Hope so, really hope so.

Top of R4 1pm news - with a different mum needing help, good!

Ah Mogglet - hang in there.