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.

[hazeyjane]

Can I ask why it is just children with a diagnosed special need, rather than a special need in the process of being diagnosed - something that can take years. There are also 1000s of children who have undiagnosed conditions, who may never get a diagnosis, but will have a lifelong need for therapy, medical support and advice.

[WhoKnowsWhereTheTimeGoes]

I agree with Jane - my child is now diagnosed but we were aware that he had issues from about 5 years before that and most of the effort that we have made to help him was prior to receiving the diagnosis.

[Lougle]

I suspect that might be a wording issue? I would imagine that as long as your child has been 'flagged' as having a SN and is in the system somehow, your view would be wanted?

[AnnMumsnet]

Hi hazeyjane and WhoKnowsWhereTheTimeGoes (who does know?!) - it's because the questions are all about support following diagnosis for this project - however we do take your point about undiagnosed need and we recognise that this is an important issue; we will do our best to address this in our ongoing thinking.

thanks

[bochead]

Agree with the other posters. It took 5 years to get DS's diagnosis.

Our story is far from a rare one, and is set to become more and more common in the current austerity climate.

With ever more cuts to the NHS looming, families are likely to be left in limbo even longer more often than they are presently, with the resultant negative impact on outcomes and family life that implies. The incentive to delay formal diagnosis by the authorities will always be there, as once a need is admitted it costs to support it.

[Lougle]

MNHQ, may I give you some feedback about your survey?

The question:

"Within the first 24 months after your childs' diagnosis, did you receive any formal advice and support on available services from specialist agencies (such as local authorities, disability charities and organisations)?"

Is very, very ambiguous. It was hard to know if you wanted to hear about

a) advice given about services that were available, with the advice coming from local authorities, disability charities and organisations

b) advice given from other agencies about the service that are available from local authorities, disability charities and organisations

c) advice given after parents were initially told there was nothing available but the parents persisted

d) advice freely and openly given

What constitutes 'formal' advice?

I'm not being picky, but perhaps my story will illustrate how hard that question is to anwer in a meaningful way, that will give you results that you can analyse:

DD1 was 'flagged' as having SN when she was 2.9. The first 'professional' we met was the Area Inclusion Co-Ordinator. She considered DD1 'immature' and gave no advice - she arranged 1:1 support at preschool.

DD1's Health Visitor arranged Portage, but only after I had heard about it on MN and contacted the Health Visitor, who said she was doubtful I would get Portage, but she'd give it a whirl. Does that constitute 'advice'? I couldn't self-refer, so in a sense, the HV 'advised' me of how the process worked. But it was me that went to the HV and said 'I want this'.

DD1's Paed didn't mention DLA, but when I asked about it, he said 'well you must be getting higher rate care, surely?' I got all my knowledge of DLA from this site. However, the Paed, once I brought it up, gave me some information. Did he 'advise' me?

DD1's social worker came to assess her. She didn't even know what piedro boots were. She 'advised' me of family fund, which we already knew about from this board.

OT 'advised me' about weighted blankets etc., but only after I approached them to ask about them because I'd heard of them here.

I was also 'advised' that

a) DD1 didn't have SN, then
b) DD1 was just 'immature', then
c) DD1's SN weren't that bad
d) She wouldn't get a Statement
c) She wouldn't get a social worker
d) She wouldn't get social services support
e) She wouldn't get specialist provision
f) There are many worse kids in MS schools

If I'd listened, and didn't have MN at that time, I would have believed.

DD1, by the way, does have special needs, does have a statement, does have a social worker, does get social services support, does have specialist provision.

It's a bit of an essay, but basically, the question is so ambiguous, that I ended up ticking 'yes' despite all of the above.

[RowanMumsnet]

Hi lougle

Many thanks for that and we do completely take your point.

What we're trying to capture is how much information is freely given by LAs, organisations (specialist or not) and HCPs to parents who are non-expert, relatively new to the process and may not have access to the kind of advocacy and advice that this board is so good at giving.

So I think what we're looking for is whether or not you were signposted to sources of services and support WITHOUT you having to prompt someone for a specific service or item that you already knew about.

In terms of your list, I'd say we'd want to hear about a), b) or d) (if d) is referring to organisations, LAs, education or health staff), but not c). And we're not looking (in that question) to capture the advice given by other parents or on this board (we already have plenty of evidence of how fearsomely effective our SN posters are) - we're trying to find out whether parents who don't have access to things like Mumsnet SN are getting the 'official' signposting and advice they need at the moment.

Does that make sense? Sorry for being unclear.

It sounds from your account ( at that by the way) as though your true answer should have been 'no'?

[Lougle]

Oh goodness! If that's what you wanted to know, I can save you the bother of a survey. The answer is almost undoubtedly 'no'

Honestly, I'd love to give you an insight to the world of SN, I'm sure most of us here would. It might bore you though.

One comment I'll leave you to think about - to get to the list I posted above, I'd raised concerns about DD1 informally on many occasions, formally at 8 months and 15 months, then been seen by physios at 17 and 20 months. I had DD2 when DD1 was 20 months, so was in and out of the HV office with DD2 between the time DD1 was 20 months and when she started preschool at 30 months. By the time she started preschool, I'd given up raising concerns, so it was actually a bit of a shock when Preschool said 'we need to talk'.

You will see that echoed up and down the country, on these boards and off. Even when needs are recognised, they are minimised and parents are made to feel that they are 'making a fuss' and expecting a 'gold service'.

[Lougle]

Oops..that wasn't one comment. See what happens when I get started?

Perhaps if you started a thread about it, we could all wade in and give you some qualitative data

[sickofsocalledexperts]

A particularly insidious way that Portage staff put me off applying for a statement was "you wouldn't want to label him too early, let's wait and see".

Whereas of course, particularly with severe autism, the earlier the intervention, the better the chances of significant improvements, as the brain retains its "plasticity" up until 5.

[Catsdontcare]

I have completed the survey and ticked yes I did receive formal support. Our county ran a brilliant 9 week parent course for parents whose children have been diagnosed with ASD. I would have liked to gave also put in the survey that the course I attended was the last one and has now been cut due to thus governments slashing of funds.

[RowanMumsnet]

Thanks very much for the input (honestly - with a couple of exceptions we're not experts here at MNHQ and this sort of guidance is really useful)

Do feel free to use this thread to post up qualitative info about your experiences; with your permission we might well be able to make use of that too (anonymised of course).

Thanks to all who've taken the survey btw.

[hazeyjane]

Ds was 'in the system' from 8 months old, when it became very much apparent that he had issues, and we have had a lot of information and advice, and professionals involved in his care and therapy, but I would still have been lost without mumsnet sn boards to help guide me through the complex web that is sn support. Ds still has no diagnosis, his condition is thought to be genetic, and is possibly a rare condition that he is in a long term study for, but we are aware that he may never get a diagnosis. He has all the therapy and professionals in place that he would have if he were to have a diagnosis though, IYSWIM, which is why I wasn't sure if I could fill in the survey.

Ds has a lead professional, who advises us on all this stuff, but she is hard to get hold of, and she often follows a certain line, rather than talking about the reality. I think it would be hard to translate the sort of advice and support I have had from the sn boards into a rl source of support (although i am not sure why, and even typing that brings a lump to my throat!)

[Catsdontcare]

We were also told he needed speech therapy but they wouldn't be offering any

[claw4]

As others have said i found the most confusing or inaccurate info or lack of info was given pre-dx. I feel that is when i really needed info.

2 years old ds was referred to paed, SALT, dietician. I was given no info on the the time scale involved for these appointments and after a year had to chase these up myself.

3 years old was seen by community Paed, he had no concerns about ds, but by this time i had found Mumsnet and was advised on here to ask for OT input with regards to ds's eating etc, which i did and Paed made a referral. I was given no info on what the Paed's role was or what his involvement would be.

SALT, a slight delay in speech and some areas. Again no advice on her role or what her involvement would be. This was just left. She visited nursery twice.

Dietician, told me i needed to be more strict with ds's eating and just make him eat. When ds simply just wouldnt eat, i was discharged, as 'he only dealt with physical causes' and he recommended a referal to CAMHS. He didnt make the referral or specify who should make the referral.

4 years old, I had to chase OT referral and received an appointment. Again was given no information about her role or what her involvement would be. We attended weekly sessions, i assume she was assessing ds, would prepare a report etc. This did not happen.

5 years old, started school, ds started self harming and ended up in hospital. With the advice i received on mumsnet, i made a formal complaint about all the services involved in ds care.

Within a few months, senior ASD SALT assessed ds in school and concluded she suspected ASD and referred on to CDC for assessment.

OT went on long term sick and no report was ever provided.

Ds's referral to CAMHS was accepted.

By 5 and half ds had a dx of ASD, Hypermobility, SPD, Anxiety, eating difficulties and incontinence difficulties.

So parents are expected to hold it all together and become semi-professionals.

It would help if procedures, roles and involvement was spelled out to parents, as soon as any professionals became involved.

[thereonthestair]

I'm with Lougle. I have a DS who has CP. We were in the system as he was also very prem. I still remember what happened with the diagnosis. We were told DS motor skills were delayed. We asked when they'd catch up. The paed said they won't he has cerebral plasy. The physio walked out to another appointment literally a moment later. The dietician who I knew took DS as we were upset, and we said what do you mean, what does that mean. The paed went to get a brochure. They didn't have any. She came back. The paed said don't google you'll only worry. I'll send you an appointment for us to discuss (which came a few weeks later). Bye.

my HV didn't get in touch. I phoned my DS' physio (he had from being prem). She rearranged her diary to explain more (about a week later we met her). I had to ask though.

GP I went to see when applying for DLA. Thta's the only input they have had.

There are no servcies available to me... No portage, no support I have to fight for the physio DS gets... funding cuts. So much for do what you can know while his brain is plastic.

The paed passed me to another paed in June. I have seen the new paed 4 times, although twice were in the corridor when i was the hospital for physio. Once she gatecrashed the physio appointment to discuss botox (recommended in a private report we paid for, which I had to get my GP to do the referral for as the Paed hadn't seen us) and once to give the botox. Still haven't had a consultation.

I am told DS needs intensive physio (after paying for a private report). NHS can't provide it. But accept it's needed.

NHS recommend hydrotherapy. Can't provide it.

I have paid for a wlaker as the NHS can't provide that either. No resources.

Tried calling scope. They have no representative in my (very large area). My idea to try, but again they can't offer anything as the area is not covered.

Other charities. To my knowledge there aren't any in the area.

Special needs play groups. Not in the area I live (despite it being a city) would have to travel to a village outside the city. Not even in the hospital. I found out about those by asking around. No-one even to date has mentioend them or even told me that they existed.

Toy library. Found out about it from another parent many months later. Almost never open.

Apply for DLA - recommended on MN. No-one else mentioned it. MY DS can't walk but hey ho get on with it.

A few months later nursery have started to get funding for DS. Their area senco recommended it. That was easy and the nursery are fantastic. But they are not in the system.

I am educated and comparatively wealthy. I can fight systems. But I am very very concerned for those who have the same systemt ot fight with less opportunity to fight it, or pay to go private.

[Ineedalife]

I just filled it in without questioning it

Am too knackered today,

Most of my support around Dx and after including changing schools came from MNSN, thanx everyone

[Tiggles]

When DS1 was dxed a couple of years ago with autism we were told when we started the process that they merely dx-ed, there was no support available. I have filled the survey in for him, however, DS2 is currently 3/4 of way through the dx process, and this has now changed. There is now an EarlyBird programme for children who are now dx-ed in our area. Don't know what it will entail yet though...

[Galena]

We have been lucky.

DD (3.6) has cerebral palsy, diagnosed 17 months ago.

She'd had physio to start with, having been born 13 weeks early. They discharged too early in my opinion. However, by then we were in the system at the local special children's centre and started going along to drop in sessions there. By 18 months old they asked me if I wanted to see a physio - as they were a little concerned that she wasn't walking. I assumed if they were suggesting it, then I did!

We saw a physio monthly and then also started going to the weekly physio playgroup.

The monthly physio worked with her for a few months and then told me she wanted to do a referral to a community paed because 'she wasn't allowed to make a diagnosis' but that I shouldn't worry because she would go to mainstream school and a diagnosis would simply help her to access the help she might need.

I went home and googled! I assumed it was CP being discussed. The paed appt came through for a few weeks later. I took DD along and the paed and physio were both there. They chatted to me for ages about what DD could do and what she found difficult. They then asked what I thought. I told them I thought it was CP and the paed agreed. Then told me not to panic - she was still DD and just happened to have CP.

She also made an appointment for 2 weeks later to talk to DH. She arranged for her family worker to come and help me fill in the DLA form, gave me leaflets, and so on.

It's now that we're trying to get her help at pre-school that things are beginning to need me to fight for them.

[madwomanintheattic]

total post code lottery.

Dd2 received support from birth (and I mean total, full on support. She was discharged from scbu with speech and language therapist and physio, and OT for specialist seating). We received an invitation to the sn baby group (which was a specialist feeding and communication group run weekly) and the sn hv filled in our dla application. Full consultant led support from the start, with move to comm paed at two.

Oh, but all this was before she was dx. So you don't want to hear about that?

We had the same level of support afterwards (she was 2 when dx (cerebral palsy) dx changed slightly at 4 )

Ds1 - routinely agreed he wasn't entirely nt, but no support.

I'll fill the survey in, but to be honest, nothing materially changed with dx at all. By that point we had been entirely immersed in the system and receiving support for 2 years. Dx just meant a shorthand title for paperwork.

[StarlightMcKenzie]

I received lots of formal support, but it was all delivered and provided by people who knew less than I did by the time the referral and waiting lists had got us the provision. And actually, even if I didn't know what I did, I would have found the 'support' patronising and frustrating.

However, knowing what I did, I found it to be grossly inadequate and geared towards reducing expectations of parents for any further provisions and services than delivering optimism and empowerment.

[madwomanintheattic]

Oh, gosh. I did it.

It is entirely meaningless, I'm afraid.

You'll get some usable data about your potential service, but the rest of it is utter tripe. Sorry.

I have no idea who can possibly have put so little effort into coming up with a 'survey' about sn services, but presumably their heart was in the right place. If this is really for you to approach the govt, I think you need to put a bit more effort into your survey design! (Starting with, um, reading the sn board?)

[Catsdontcare]

I agreed with madwoman I'm afraid.

[Lougle]

Rowan, I don't normally like to speak for other posters, but in case you are feeling a little got at, please hear the message and not the delivery. It its because we care so much and because what you are talking about means so very much, that people are being so frank.

It really is scary when you see people who clearly haven't got support, trying to navigate the system. Even worse when it's obvious that they themselves have needs. It's like watching a cat playing with a mouse. No competition at all.

[hazeyjane]

I find the trouble is that if your are lucky enough to get the support, the actual co-ordination can be a nightmare. I remember thinking after ds's first TAC meeting at 10 months old - 'wow that is amazing, all these people sat around a table working out a plan of how to help ds, physio, ot, salt, early years worker, developmental paed, community paed, hv, gp....' really it seemed incredible that all those people were there to help ds. However chasing up the appointments, realising that certain therapists couldn't work with other areas (because of districts), finding out about stuff like statementing, funding, filling out forms for dla, appealing when we got turned down is down to me. Add to that the fact that in the last 16 months ds has changed and his needs have changed - his chest problems, swallowing issues, worries about his heart and now possible seizures, all these things have needed us to chase down the paed, fight for emergency appointments, sort out correspondence etc. It feels like climbing up a moving staircase going in the wrong direction, if I don't keep moving then i start sliding down hill.

Having a diagnosis shouldn't matter, the needs of the child should matter, but unfortunately it does seem to matter, when it comes to the practical stuff like dla, statementing etc.