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.

[FrustratedSycamoreBonks]

Done survey, we have multiple diagnosises but no support available that takes into account all diagnosis, they mostly deal with one diagnosis or another.

[StarlightMcKenzie]

But I have met several parents new to dx being warned by professionals to stay away from internet forums (sometimes mentioning MN) because they are 'militant', 'agressive' and 'cultish' and therefore dangerous.

These parents are told that people on these boards are not experts like them, and suggest dangerous therapies as well as dangerously advise them not to listen to the real life 'experts'.

I am keen to learn who who has prompted MN to take an interest in this section all of a sudden and why.

[KittiesInsane]

In our case the diagnosis led to LESS help in some areas.

Child not eating? Oh no! Surely we need a dietician!
Child with autism not eating? Oh dear, I'm afraid that's part of his condition and not something we can help with.

Child terribly anxious, with OCD, terrified of birds, cars, insects, viruses, cleaning chemicals: maybe CAMHS can help?
Child ditto, with autism: Oh dear, I'm afraid we don't have anyone qualified to work with autistic children on that sort of thing...

[Lougle]

"But I have met several parents new to dx being warned by professionals to stay away from internet forums (sometimes mentioning MN) because they are 'militant', 'agressive' and 'cultish' and therefore dangerous. "

Come on Star, they're not wrong We're dangerous to the budgets of LAs

[Lougle]

I agree HotheadPaisan, but it would be wrong for us not to tell MN that their efforts may be wasted if they don't focus more clearly. It should be a team effort between those of us who live the life and the forum which gave us a 'home' to support each other.

[StarlightMcKenzie]

Well I think the problem, made worse by the local offer agenda, is that there isn't a right way of doing things and no two parents ever deal with the same system. Even SENDIST seems to have a whole load of unwritten variables.

I think that is why the 'group' response that you get on MN is so effective.

How many times on here do we get someone asking if their solicitors advice should be taken!? Or even IPSEAs for that matter?

Unless of course the 1:1 thing is more about highlighting the fact that things like IPSEA exist or that there is such a thing as a 'local offer' which people can then post questions about.

I have to say it woukd be fab if MN were to move on this. But it is important that they actually grasp the issues as they are for MNers as that is why it has the profile it does. Unless of course it is the intention of MN to change the profile (which might be why I keep getting ticked off privately)!?

[Lougle]

The local offer is a mess. Truly it is. We'll have to wait and see what the results of the Pathfinders show, but it doesn't seem to be any different to Statementing right now.

[slightlycrumpled]

After DS2' diagnosis (age 4), after 4 years of it being apparent something was very wrong I would have loved a 1-2-1 chat with someone signposting me.

Shortly afterwards I found MNSN & got some brilliant advice which we took & ran with .

For us the problem was that we coped too well I think, whenever DS had an appt we would go along all smiles, interest & off course our own ideas etc that I believe we were bypassed very swiftly for support. I think a lot of MNers will be the same. So somebody simply pointing out 'you should be entitled to xyz' these are the next steps would be brilliant. A couple of years ago I started volunteering for homestart, & I was incredibly shocked during the training just what support was available in our area for families with a disabled child. I had had no idea!

I also think that there must be so many lurkers on the board that for whatever reason do t want to post & ask questions.

[Lougle]

That's what's inspired me to start a blog, zzzzz. I've posted on this section of MN for 4 years, and we see the same questions, the same issues. I don't mind that at all, but it's such a waste of time energy and resources to do the same google searches for the same excerpt of the SEN CoP, when I could use my time to find new stuff that will help. Of course, I wouldn't want people to miss out on advice because we've all been there and done that...but why keep reinventing the wheel?

What we need is resources.

[slightlycrumpled]

Well I do agree that provision is shockingly dreadful. The cast majority of the support here is via charitable organisations.

[slightlycrumpled]

Vast not cast obv!

[hazeyjane]

The best help I have had is from a m'netter who called me up with advice - her dd1 had had some similar helath concerns when ds's age, and she was so straightforward about what questions I should be asking, it was brilliant proper, practical, sympathetic sensible advice from someone who had been there.

She called again a couple of weeks ago when I was flailing in a maelstrom of ds being asked to be part of a study into the genetic condition he may have (no diagnosis on the horizon for a good while yet!), the fact that he was possibly having seizures, a problem with one of his lungs and the fact we have to sort out his statement. After her call I sorted out a list, wrote down all the calls I had to make and generally felt more, 'right, lets do this'

Some sort of matchmaking service where people who have been there and can just help you organize your head into a state where you can cope with all this stuff would be amazing.

[ThatVikRinA22]

done the survey hq.

[madwomanintheattic]

Hazey, that service already exists....

And has done for a looooong time.

Contact a Family.

Contact a Family do this routinely. More people need to use their service, exactly as you describe.

The problem with sn support is that it is so fragmented.

I think if we all start signposting to the organizations that work, fundraising for them, and bolstering the support they already offer, that there will be no need to try and set up yet more support services to fragment what's available even further.

Mn could do far worse than join forces with Contact a Family, for the type of support you are discussing. They are the ideal group to maintain a regional database of both families and provision (and I suspect, already have the majority of the database built, with some minor tweaks).

Having been on the not for profit side of the house in disability provision for some years in the UK, the most valuable part of our own service (which was a local service for disabled children and youth and their families) apart from the actual courses we ran, was the constant round robin of information that we sent to all of the families on the database, keeping them in touch with everything going on. But if you hadn't found us, you probably hadn't heard of most of it.

Contact a family already have a good reputation and are accepted by health services. A new database would be set up in competition, and doesn't particularly make sense.