Thursday, January 20, 2011

Mumsnet lady

The number of people reading this blog has suddenly shot up - no doubt due to the publicity around Riven Vincent whose disabled child is being denied help by her local council because the government has cut the councils budget, so I feel obliged to comment.

I don't know all the details but I recognize the situation. We had similar battles with our local authority and it wasn't until our son was 18/20 years old that we got anything like an adequate service - and that after years of fighting and distress. Not everyone has the support we did and I feel for the family. I often feel guilty that we got a service when I knew others weren't - that's partly why I do this blog. We have to make it better for everyone. Riven should not be put in this position, now she's in it she must be helped out with a better service, and the government and councils must be made to provide these services for all who need them. We need all of you to help - there are lots of Rivens out there who haven't been pushed quite as far, and a significant number who've been pushed further. Mr. Cameron talking directly to her isn't a service, it's a PR job - she deserves a service. The cuts are making this worse and he's presiding over them.

On a side issue, we also had to deal with the press when our son was little - not on quite this scale. It wasn't a fun experience, we didn't want it, it got in the way, they told lies (not nasty ones, they just made things up), it didn't get us a better service and I see the press now as very much a last resort. Publicity like this may help this 'cause' in the long run but I hope it doesn't hurt the family as much as it did us - it isn't an option I'd choose and I suspect it isn't one they chose.


  1. I agree, this is a PR stunt. I am hearing of councils making cuts by reducing services to disabled children and their families. This is obviously wrong and will simply result in further costs being incurred in the long term. I can't believe the short sightedness and cold heartedness of the current Government.

  2. Our son is similar to Rivens daughter, gastrostomy, non verbal, epilepsy, airway suction, slept by bed etc. Only help we could get were Childrens Hospices. He still needs 24/7 nursing at 28. Sad that things aren't much better for children now. It took us 18 years to get a decent service - it should be better by now, for Riven and her daughter. If we make enough noise, maybe it will - or at least limit the worst of the cuts.

  3. PS cuts here are across disability services but include respite for disabled children. Not just Bristol. Government cuts councils, they cut the services at ground level.

  4. There's apparently someone from the guardian wanting to interview more families in this position and I've volunteered a few things but I'm also mindful of the fact I can't be having my son caught in the backlash by putting his photo in the paper. Still, as the mother has said "this isn't news, it's happening all over. I'd be more grateful for the letters of support if I wasn't so tired!" She sounds so fed up, bless her.

  5. Did you get the name of the journalist? I'll have a look anyway. I blog as Ned Ludd, carer for exactly the reasons you've spelt out.
    Ned Ludd

  6. I have listened with interest this morning to how this is beginning to be "spun". Cameron's says it is not him, it is councils, and a council spokesman acts shocked - they are getting a special school, special equipment, and a "full care package" through Direct Payment, AKA 6 hours a week. If this lady isn't careful, she will find herself being portrayed as greedy, unreasonable, and benefitting at "tax payer's" expense. I love that one, having been a tax payer for rather a lot of years myself.

    She has my sympathy, anyway. You do what you have to do.

  7. For your children, you do anything. She's had six hard years - I know how hard - not sure we survived it.
    The quoted special school (she's entitled to education just like any child), special equipment (without which she might not survive - probably not provided by council but NHS) and Direct Payments (council abdicating responsibility to help) at this level is simply inadequate and probably insulting for this level of disability.
    It's about what we got - nothing like enough.
    With his personal history Cameron should know better.

  8. Cameron never had to do any of it - he had all the nannies and care he could get. He didn't even know that NHS nappies are allocated and limited to only four a day as of course he could get as many as he wanted whenever he wanted.

    Not an isolated case, this.

    On twitter: @Louise243 was the woman's name, but will keep an eye out for more journalists calling for case studies as it's now "big news" and I imagine there will be more coverage.

  9. I've contacted Society editor at the Guardian anyway offering some information. If interested Prof. Mansell at Kent University did a report on people with complex care needs like Celyn and my son for Dept of Health called Raising our Sights. There are more of us than you'd imagine.

  10. Though nannies and pots of money clearly make a rather large difference, I imagine Cameron is uncomfortably aware of the problems in the way that most aren't. Riven's account of his visit seemed to indicate that. Fascinating example of how real politik and ambition get in the way of human sympathy. I can't decide whether that makes him better or worse than the average political no-nothing and care less.

  11. I had hoped his experience might make him more amenable to action than 'sympathy' - apparently not.

  12. Mr. Ludd, We are newly acquainted. I am slowly working my way through your blog, and I have just read your comments on Personalisation. Thing is, we have just been Personalised, and I am desperate to find someone who understands how this works. After 32 years as a carer, you'd think I'd have a clue - but I haven't. I know the theory. Identify Need ...SAQ...RAS..Budget. Simple. Well not to me it isn't. I dulyu ticked the boxes, fairly determined that my daughter's needs should hit critical some of the time (they have been classed as substantial before, but I thought that was the highest category, and only found out by accident it wasn't.) I ticked the top boxes, which surely must be up there somewhere. The idea of Need had me flummoxed. My daughter is cared for at home 24/7, we got 19 hours of care. Couldn't see that changing a lot. It hasn't, much - because the only question that seemed to matter was what would we do? As the answer is anything...but wearing out a bit, we now have more hours. Maybe 20% instead of 10%. But what has that got to do with need and how do they arrive at a figure for a budget? Very naive, I know. But it beats me.

  13. There are no real experts on 'Personalisation' - every Local Authority is doing it it's own way. (In Control is the organisation that devised it and may be able to help - website, but don't be fooled by the 'individualisation' PR and the Charitable status - they're there to support the councils mainly.)

    Getting your RAS (Resource Allocation System) score involves them/you scoring the needs and then weighting them against other peoples needs e.g. weighting incontinence against autistic symptoms etc. and getting an overall score. This gets converted into money on a standard basis. It's very maths heavy and I've met few social workers or RASO (RAS Officers) who understand it.

    Getting your score, being told the result and then finding the money won't buy what you already get seems to be normal (wrong but normal). You need to complain - talk to In Control and insist a social worker explains the system to you - (not many can.)

    One key thing to remember is that any care you provide is taken off the cost of providing for whatever the needs are assessed as - the more you do, the less they will allocate. Your care input is rated as zero value because it costs them nothing.

    The system is generally a mess but some cleverer councils are rigging the scores and ratings comparisons to keep costs down. Some are even putting 'cost ceilings' on the scores (this is illegal).

    Fight the result if you're not happy - my own view is that most people will be unhappy once they get a result. Best of luck - it won't be easy.