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.

[madwomanintheattic]

Right, but that's what I mean - it makes sense to bolster and support expansion of an already existing and respected organization to provide national cover - one which already provides a great deal of the valued support, than start up yet another variety of the same thing, which also wouldn't cover, I dunno, the outer Hebrides.

It would be so much easier if all of the mnsn ers volunteered to be cad mentors, and offered to expand and bolster their existing information provision in the way discussed. That way it is adding to existing provision and making it more valuable (and more accessible to everyone).

I have no particular link to caf (and indeed have never used their services, though I know lots of people who have), but it would just take a few mners and mnhq to set up a meeting with their main office, and try to hash out a liaison.

Trying to set up a 'new' service is duplicating what already exists, and would be a heck of a lot harder for people already dealing with substantially more shit than most.

I still like the idea of an sn 'trackitt', but really if you want to make any headway with improving information dispersal and provision, you need to join forces with an existing organization, and someone like contact a family would be ideal.

[EllenJaneisstillnotmyname]

Contact a family is good, but my local support group broke away from it as it found it too restrictive. It seemed like you had to have a DX and would be put in touch with other families with that DX. But as we know, you need most support, often, pre DX when you are flailing around in the dark. So in my town it became Carers and Families and offered support to anyone with a DC with some sort of SN.

[madwomanintheattic]

Well, that's the point isn't it - even one child unsupported is a problem. The current remit of caf is indeed to put families in touch with a child with the same dx - there is no reason why (if you are talking about funding and running an organization that supports both pre and post dx) that the caf remit couldn't be extended to include pre dx, with contacts based on issues/ symptoms/ difficulties instead of on the whim of a diagnostic authority.

It still relies on parents as advocates though, which is never going to be an entirely win-win situation.

It depends on why it isn't working, zzzzz. If it isn't working because it needs a wider remit and more money, then fix that.

There is a huuuuuuuuge competition for grant money for charities and not for profits as state funding gets cut and services axed. You don't want yet another one with duplication of services vying for the same funding. It depletes existing services that are niche even more. Pan disability orgs need to stand together and sort the nonsense out, not compete with each other for the scrapings at the bottom of the barrel.

I have no idea why, how, or on what basis mn hw is 'talking to the government' regarding sn provision... But they need to be talking to other organizations as well.

[madwomanintheattic]

No, quite - and that's why my first vote was for an sn trackitt on the ther thread. A website with timelines would be easy enough - and the turnover of users would in theory keep it up to date if enough people knew about it to post. The data would be out of date v quickly, though.

But that's a different thing to the sort of info that Hazey wanted. A real person with real life advice.

No health profs would signpost parents to a trackitt website though. So you are still stick with how to signpost and get it populated. Mnsn is extremely small in the grand scheme of things. It's interesting that mnhq are looking to 'discussion' on the basis of such a poor survey, with a focus on dx... None of it makes much sense tbh.

Presumably they are trying to keep a low profile after the last mnhq sn media frenzy.

It would be the same as anything else, though - only the parental advocates who fight for support would post (or even bother to look it up) so it would become another tool for the more able.

The focus is still on parents to sort it out. Not on professionals to deliver regardless of parental capability. All kids should receive the support they need, not just the ones whose parents have the savvy to check timelines and shop around on the Internet.

[madwomanintheattic]

(Not disagreeing with the finance angle btw- and that was kinda my point - don't waste it)

[hazeyjane]

I looked at Contact a Family, but the first thing they ask is - Has your child been diagnosed?

The m'netter who called me wasn't local, so wouldn't have been part of MNLocal.

Actually I think this is about 2 separate things. On the one hand there is the amazing help and support that can be got from others in a similar situation, there are several places where this can happen - MNSN boards, various Facebook groups for specific conditions and organisations like CaF and SWANUK (syndromes without a name). I think there is the sort of support there that i was talking about earlier, but you have to find the thing that suits you, and be bold about asking relative strangers for help.

On the other hand there is the fact that there is a raft of support out there, but it is different district to district, and it is very hard to find out what is on offer, whether it would actually be of benefit to your child and how to pull it all together. Now ds has a lead professional, she is the person who at the beginning is supposed to sign post all the help out there, and act as a go between between professionals and agencies and the parents. But I would say that in our experience this has been a massive fail. It has been hard to get hold of her, professionals haven't turned up to the meetings that she has arranged, we have made decisions based on information she has given us that has been wrong. This is the area that needs sorting, there is no point in appointing a lead professional to a child that then doesn't do the job, because as happened in our case, you become your child's lead professional, and hack your way through the sn jungle as best you can!

I don't really know how the questions in the survey really relate to the above, and I still think it needs to be talking about children who don't have a diagnosis as well as those that do.

[madwomanintheattic]

Yep, totally agree - and said up thread it should be issues/ symptom based rather than dx, to expand remit.

You are absolutely right though - the issue isn't with providing yet another parent-led support institution, it's about professionals not delivering what is required regardless of parental interest level. And if your key professional can't get other professionals to even bother to turn up for a meeting (I am obviously being facetious, as they had probably had to choose between five or six equally important to the parents meetings that day) then it really doesn't matter how much knowledge and empowerment a parent has - the system to support need is still completely under-resourced and funded.

[slightlycrumpled]

What could we do madwoman? I agree with everything you've said. I've often thought that it is shocking what support we have missed out on and I am extremely proactive at sourcing info etc. It is frightening to wonder what would have happened if we had been less able to do so.
Despite four years of very specific health & development concerns it still took that long to actually get to see someone to begin thorough investigation into the cause. Once that occurred diagnosis came very quickly (chromosome abnormality).

I feel so frustrated, but also a little disempowered. I have managed to secure sufficient provision for my son, but it's been a long slog & I am certain the very mention of our (unusual) surname to our mp and CEO of the pct trust sends off alarm bells! I'd love to do more. It is so wrong that whilst we are fighting so hard for them we are, of course, dealing with our own heartache about having to do it in the first place.

[madwomanintheattic]

Well, I dunno. I have a fundamental dislike of the state washing their hands of welfare support and letting the voluntary/ charitable sector scrabble around to pick up the pieces and fight over any residual pennies whilst they try to patch up gaps in services.

But I also do genuinely believe in the idea which has loosely been conceptualised as the big society - but from a community spirited rather than sheer cost savings pov. The danger is that the government slowly and carefully distances itself from the basic national 'welfare' remit. And whilst they are doing this, they are disengaging from the responsibility of provision.

It's insidious, and a bit grim.

In terms of educational and health (leaving aside social services, respite etc) they are very clearly letting kids fall through the net due to sn. I can't disassociate this issue from a wider concern I have about educational standards though, so in my eyes the failure of schools and LAs to recognise and support children with sn is tied up in a much wider failure to deal with anything that is outside of a fairly low average. Too many kids, too few staff, and a sheer inability to think outside of the box and in terms of individuals, rather than a marking scheme and a national curriculum.

The rigidity which is now built into the system is making it harder for individual children to meet their individual potential. It's a complete sausage machine, with kids being stuffed in and forced through to the end. Sn kids don't fit, but it isn't ideal for anyone, really. So, I think there are greater problems in education which are highlighted by sn kids, but that are failing a much wider section of society.

Realistically, every stakeholder in the disability and sn arena needs to start working together, and I know there have been some moves to do this over the last year or so - I'm not up on the current status quo in the UK.

I like the idea of a trackitt. But it will have inherent bias, and could lead to lowering of offers from LAs and PCTs. It would be interesting for the government to introduce a new raft of reduced waiting time KPIs for the education and health community specifically for sn... Ie a maximum of three months between referral and assessment for speech, OT, physio, camhs, paed, ed psych etc. With associated penalties and a published scoreboard...

I haven't looked at the NICE guidelines for yonks. Don't know what they say currently - but possibly more impetus around publishing guidelines for sn that avoid 'wait and see' as far as possible, and that prioritise early intervention.

I'd be looking to see how health waiting lists have been brought down in other clinical areas - oncology, surgeries etc, and trying to apply the same expected standards and penalties for failure.

But it's all cash.

And there isn't any.

So we all do the best we can, whilst the welfare, health and Ed system lets everyone down, and the voluntary sector tries to hold it together.

[madwomanintheattic]

[Lougle]

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

Perhaps some clarification from MNHQ would be helpful.

You are talking to the Government - what does that mean? Are you chatting with Dave, or talking to the relevant Secretary, or simply emailing No. 10?

Are the 'various issues' all SN related, or is it more scattergun than that?

How did you decide what topics to talk to them about?

At the moment, I'm scratching my head a bit, because canvassing opinion would normally cover more than one question. Equally, I'm sure it seemed so simple at the beginning, with the survey, and it's all sort of exploded

[RowanMumsnet]

Hello

Thanks so much for all of this - honest. (I think one of our 'learnings' here is - next time, start a qualitative thread as well as a survey.)

First off, we didn't mean to imply that our entire proposal is going to be based on data provided by this survey - it's really not. We just wanted to capture a fairly simple (we thought!) point about whether parents/carers who are new to the SN world get comprehensive advice and input at the outset - wherever the outset happens to be (and we fully take your point that that may not be diagnosis; sorry to have got that so wrong.)

We're going to have to be a bit frustratingly cloak-and-dagger about why we're doing this, and exactly what we're doing. We're really sorry about this - it's not because we don't want to share more details with you; it's because we really can't.

But all of the info you've provided here is immensely useful and will inform our thinking hugely. And (if we've understood you correctly) there seems to be a need for a comprehensive directory of what services and targeted support is available in each geographical area (however defined) - is that right? Also take madwoman's point about CAF possibly already having done some of this work.

Plus, also fully take on board Starlight's point (backed up by many of you) that even when support is available, it may be of insufficient quality.

@claw4

Even though this thread is not about support from other MNers, i think this support is far better than any changes you are likely to make with regard to parents receiving advice from professionals at dx.

We don't doubt that, and we're not in any way trying to replace what's provided on this board! Please rest assured that anything we do in this area will always involve directing as many parents/carers as possible to the MNSN boards.

@claw4

Also whether MNHQ were asked by the Government to conduct the survery?

Nope

@StarlightMcKenzie

Unless of course it is the intention of MN to change the profile

That's a 'no' as well - we'd be idiots to try to change this board (and let's face it, very unlikely to be successful even if we tried )

@madwomanintheattic

if you want to make any headway with improving information dispersal and provision, you need to join forces with an existing organization

We are on that, madwoman - this isn't something we're considering doing on our own

[madwomanintheattic]

I have absolutely no idea what CAF have or don't have tbh - I only raised them as a point of focus as they provide a service to link families with similar dx. Presumably if their database has this function, it stands to reason that they are at least in the zone for provision of a family based national support network, which could be expanded and subsequently utilised to provide some sort of comparative data...

...but very interested to hear more in due course...

The real issue, Rowan, is that we don't need vehicles for parents to take on more responsibility for fighting to get their children's needs met. We want health, Ed, and welfare to just, y'know, meet their needs, like they are supposed to. The system at the moment is woolly and weaselly, and kids don't get anywhere near meeting their individual potential.

KIDS, then?

I've done some work with kids.

They are doing a great job of trying to plug gaps. (Or they were a few years ago anyway). I asked what had happened to the extended schools stuff that they were championing for ss, on their first webchat on here, I think. I was involved with summer holiday provision for children and youth unable to access mainstream playschemes. At the time they were having to partner with local charities and nfp's in order for provision to exist.

[Lougle]

Rowan, can I point out that if you are being told the 'new system' with the 'Single Plan' is going to make a real difference to parents, so don't worry too much, by the Government - it's rubbish!

So far, one of the biggest issues with Statements (leaving aside the implementation; the lack of specifity; the lack of quantification; the woolly wording; the leaving out key parts of a child's needs in Part 2 so that they don't have to address them in Part 3; the minimising some areas of need and stating more minor areas of need as the key need because it downrates the statement; the illegal blanket policies on provisions, thresholds for assessments, the list goes on...) is that there is no obligation for Health Services to contribute in a timely fashion and SALT/OT/Physio are often listed in Part 5 & 6 of the Statement as 'non-educational needs' which means that the LA don't have an obligation to provide the therapies. In other words, the NHS can say 'we don't have the therapists' and the LA can say 'it's non-educational.

The Single Plan is precisely the same. The only obligation, legally, is on education, which means that it will be education (schools) who deal with the Plan process and health and social care can wash their hands of it, effectively. It is the same thing, just expected to cost less.

Please don't be told something without checking out thoroughly from independent sources, that it's as clear as it sounds.

[Handywoman]

I did this survey but found it quite meaningless, tbh.

HW x