SURVEY NOW CLOSED Do you have a child with any diagnosed special need - please complete a survey for MNHQ

[AnnMumsnet]

Hello - here at MNHQ we are talking to the government about various issues and want to canvass opinion about a number of topics.

This survey is open to any Mumsnetter who cares for at least one child with any form of diagnosed special need.

If this is you please answer the survey questions by clicking here.

As well as our eternal thanks - if you complete the survey and add your details at the end we will enter you into this months MN comps. (NB: It's one entry per MNer per comp only so if you've already entered we will de-dup the list when it comes to selection time).

Here's the link again

thanks, MNHQ

PS if you've already done the survey via the panel this week please don't do it again.

Hothead. Thanks for that link. 18 months after my DS diagnosis I was aware of none of that despite being in the same area. I don;t suppose you know anything about what the area are going to do with medical (not educational) hours do you? or who to ask? if you do could you PM me as i need to bear it in mind for when I apply for a school (DS too young yet).

I have had 3 consultants, 3 physios, an OT and 2 SALTS. None of them have really said much about support available, and all of them I have had to fight for. Despite DS having a diagnosed medical need. I also think that the terminology of special need can be a little limited. DS doesn't have special need. he has individual needs like all children, but because of his condition (cerebral palsy) some of his individual needs are unlike the individual needs of most of the rest of the population.

MNHQ whatever this is for, can you also bear in mind how mcuh we have to fight for, as well as how much we have to supplement with either DLA, personal budgets or our own funds because there just aren't the resources to provide what is needed. And if you are trying to improve services work with whoever it is to make the information available about how people find out who is even registered or available to help. whether that's providing physio (in my case) , salt aba or whatever. That's the information I find that it takes an age to discover when you are left alone without support.

For what its worth I also think the survey is pretty meaningless. My DS has CP I could still have told you a lot of what other posters have been saying about their children and their experience by just reading some of the other threads on this board.

It's additional needs here, tbh.

There are loads of services out there. But mostly they are über secret and dependent on you knowing the second cousing twice removed of little Johnny's uncle's mum who met the lady who runs it in Gregg's last Thursday.

Let's face it, actually promoting a service might mean it gets used and needs more money to meet demand.

I am chortling that someone else obviously had the same idea as me yonks ago though. Never let it be said that I am years behind the drag curve, oh no.

Just expansion of remit/ coverage, and promotion, now, then.

Zzzz, the outer Hebrides do need coverage, y know. I was in no way suggesting that Devon was too pissant to deserve it. It was a comment meant to show the current paucity of a postal code led service. Who gives a toss where you live? If a child needs support, they need support.

When we moved, I was told I would have to make a five hour round trip to see a paediatric OT, because there were no sn kids and no service locally. S essentially, with the weekly, OT, pt, and slt, I would be driving 15 hours just to get to appointments. It was all bollocks.

The entire sn system is based on the right hand not having a fecking clue what the left hand is doing. Rather like dd2 at times...

Have completed the survey.

IME I got told lots, lots of useful info about support groups and lots of info about the sort of support my son should get, sadly on the whole it hasn't materialised.

That was all from my sons Paed.

This board and the parents that make it, have been most informative on the variables of SN provision.

Knowing what support and provision hasn't been the problem for me, its the getting it where we keep coming unstuck.

'There are loads of services out there. But mostly they are über secret and dependent on you knowing the second cousing twice removed of little Johnny's uncle's mum who met the lady who runs it in Gregg's last Thursday'

Yes. And this secrecy is not as a result of miscommunication, but mostly deliberate.

There is a huge gulf between what a LA can report to 'offer' and what children actually get, and that is before you even start to look at whether what is offered matches with what is needed.

Peas, are you on the cp support thread? (I've kinda lost track who is on it - there are loads of us now)

Lack of will from the state sector. Sadly the charitable and voluntary sector need the state sector to promote the services they have been forced to take on as no one else is providing.

Our OT and physio were reasonably good at suggesting funding avenues for equipment (local charities/ rotary etc) but no never not once have I ever heard a slt suggest cerebra funding.

It very much depends what's in vogue locally as well. Three entire notice boards at our local children's centre were covered in beautiful information and contact details for a juvenile diabetes support group. Which is great if your child has juvenile diabetes.

After attending there for three years I found a dog eared a4 file under a stack of leaflets, which actually had a single copy of all the services on the area.

Had I been offered a copy of that information three years previously (it had obviously been there since Pontius was a Pilot) it would have saved me a lot of hassle.

I should add that as a military family (ex) we moved. A lot. Not just within the UK, but o'seas. So I have a huge vested interest in the availability of easily accessible information. Having had to set up in a brand new no choice in it area/ county/ country, and find out how sn works (or doesn't) in that particular corner of the world? And know that you have to move again either one or two years down the road? And keep some sort of continuity of support for your child with cp? Mm. Tell me about it. I've got a workable system. But tbh you'd think it would be pretty same old same old. No such luck. Add in a second kid with different issues, and it's like those spinning plates in different directions...

yy to Madwomans' comment re:difficulties of finding out about local support. The ed psych didn't know there was a local ASD support group .

99.9% of the useful info I have had was from MNetters.

MNHQ - this is all odd, very odd.

For most of us one of the biggest issues is the utter lack of accountability we encounter within all aspects of children's disability services from health to education and your stance just perpetuates that problem imho.

You want answers to a question in order to talk to the government but can't tell us to whom you will be talking to or for what purpose you wish to use our answers?

Am I the only one who feels a deep sense of unease at being approached for our views in this way? I feel that you cannot adequately represent us while adopting this cloak and dagger stance.

I must admit that, although I hadn't given it a second thought at the time, Bochead makes a very good point. You would never see that approach taken to other life changing experiences. For example, rape crisis, cancer diagnosis...can you imagine those groups being asked to share information with a codicil of 'you are just going to have to trust us that it's a good thing....'

MNHQ, we seem snippy, but you have to understand the culture of SN provision. We fight the misinformation, no information, daily, so it is disheartening to see it here also, when we could give so much insight if you were to see us as 'partners' in what you are doing.

Search the archives -you'll see that those of us who have been posting here for years know a thing or two about SN.

Done.

agree with bochead.

It's the evangelical approach and attitude that we spend the majority of our time fighting to be honest. Less so for provision as you realise soon enough that much of it isn't worth fighting for.

The 'just have faith and you'll reap the reward' attitude, and then the further 'don't question us or you'll be damned and we'll use our powers to cut you off from our services'.

Not accusing MN of this btw, but it is our life outside of MN and it is a bit worrying to see similarities.

zzzzz, sorry, I should have said 'I' seem snippy.

Agree with bochead

Bochead and zzzzz - absolutely agree with you guys.

I would hate to see any MN approach to Government sources or an application for funding which suggested they represent the views of this board or can speak the parents of children with disability based on this very limited survey.

To merit any assertion of representation, MN should need to demonstrate far greater understanding of the issues we are posting about. Start with reading the posts or setting up a focus group.

Or why not support us instead? Are we too controversial and not cuddly and disabled enough? I sometimes think so. If this is not the case, why not throw the MN weight behind us as we campaign against reform? Why not ask what we would want? You have done it on other issues: now is the time to speak up for children with disabilities. If you tolerate this, then maybe your kids will be next.

Timpson's appearance last week very clearly demonstrated the current state of play: he understands very little of the issues involved and is completely unwilling to engage with parents directly. But this is because his reforms are about saving money - simple as that.

This a dysfunctional, fat cat, Government who are completely lacking in moral compass who are now talking about making it even harder to judicially review the decisions of public bodies. Harder - there is precious little accountability as it is.

This is not a time to be co-opted or to provide a fig leaf for Government cuts. Use your mumsnet powers wisely - with great power, comes great responsibility!