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

(124 Posts)
AnnMumsnet (MNHQ) Fri 16-Nov-12 11:37:31

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 Fri 16-Nov-12 16:02:40

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.

zzzzz Fri 16-Nov-12 16:23:18

I found it difficult to fill out. I have 2 sn children, 1 sees a pead once a year, is overtly different, has a severe language disorder and is home educated because school is impossibley hard. He has seen SALT twice this year, the book i bought was pproved to use in school. We receive no other help though he needs constant care. No dx.

His sister sees her pead twice a year spent most of the Christmas holidays in and out of hospital including ambulance rides, HDU, and we nearly lost her. She needs constant supervision and should have a monitor in her bed to warn us if she needs help, but the MuirMaxwell who provide them were oversubscribed Jan to July, we are quite sleep deprived this year. She has been mute at school or over a year, it took until spring half term to get a nurse to train school so she could attend. We have had no other support.

Ds was born different, dd became different after a virus. It took 3.5 years to get to assessment for ds, despite him being unable to use any names including MaMa at 3.5. Dd was in HDU but her dx is idiopathic epilepsy, which means "she has seizures" , not cause etc.

Do I feel cosseted, know what help is available, even know what help should be? No.

Get someone somewhere to write a list of services available, in each area. Until that's available how can we talk about;

post code lotteries,
whats needed,
what's a waste of money,
what we'd like to see?

Would you like to hear about education?
Would you like to hear about treating children with sn, for non related illnesses?

Friday night is an excellent time for us to get our danders up!

Oh MNHQ can we have a goose honking explanation sticky? It is the ultimate intervention. grin

I hope that ding sound too negative, it's quite hard to be neutral about it all.sad

madwomanintheattic Fri 16-Nov-12 16:29:01

And lol at starlight's comment re knowing more than the experts... We moved areas (we move a lot) and dd2's new paed wrote me a lovely explaining what cp was. Unfortunately she got it all completely and utterly wrong, and I actually called scope in horror that the 'specialist' dealing with my precious dd2 had quite literally no idea what she was talking about. Scope were not in the least bit surprised and just told me to ignore her.

So, we really just told the paed what referrals we wanted, and ignored her otherwise. It was a mere blip, as we knew we would be moving three years later anyway. What's three years in a lifetime? wink

HairyMaclary Fri 16-Nov-12 16:47:32

Have also done it and agree, it was difficult to answer, our situation is similar to madwoman's. Was discharged from Hospital to physio/ OT etc but with no diagnsosos. We moved country, to here, when DS was six months so referrals came with us, but he was only officially diagnosed at one (but we knew, and so did everyone else, that he had cp by the time he was 5 days old) by which time we were seeing everyone we needed to.

Post official diagnosis we were helped through the school issues, referral to ed psych etc but we were mostly plugged in from the beginning. In terms of the support offered by the professionals though it was a different story, for physio, OT, speech and consultant paediatricians and statementing officers I have pushed them for what I want, and I only know what I want from extensive research on here, other parents and the rest of the internet. Even getting to see the professionals doesn't always help!

pinkorkid Fri 16-Nov-12 17:50:05

I ticked "yes" because we have been offered support along the way, some useful, some not so much, some downright harmful. So I'm afraid a quantitive survey like this one won't give you a true picture of how much real help SN parents receive post-diagnosis.

some examples

useful:

- advice from other parents who have been through similar experiences, sn mumsnet prime example

-having medical experts alert us to dc's eligibility for dla - gave me the confidence to apply. I would have hesitated to do so off my own bat

-advice from partnership with parents, NAS, SOSSEN, IPSEA helped considerably with statementing process, school issues

-some individual work offered at camhs (after long delays in most cases)

fairly useful:

-parenting courses

harmful:

audiologist who dismissed our worries about autism, ds difficulties obviously down to hearing loss only.
Ds did have glue ear and temporary hearing loss, it turned out he is also autistic and always will be but this wasn't confirmed until after his hearing improved and behaviours hadn't changed. Opportunites for early intervention were lost

Primary school senco and head insisting that ds would never get a statement of sen. "We are already doing possible and necessary for ds."
(That would be why he had produced no written work for the previous two years, was bullied and isolated in the playground.)
"The only other intervention available would be if we were to refer you to social services"
- underhand threat.

LA chief sen officer "we can't compel camhs to do anything" -
wrong they could but they might have to pay for it.

LA officer responsible for education of children too ill to attend school - "we have no official policy on the provision of education for such children but our practice is based on the legal document Access to education for children and young people with medical needs "-
wrong, their lack of published policy and actual practice are in direct contravention of the law on provision in these circumstances.

ohmeohmy Fri 16-Nov-12 18:21:51

I was lucky as we knew something was wrong from birth and had very early intervention from developmental centre weekly from about 8 months, then portage, then supported nursery etc. Finding it harder now he has moved to secondary school.

I think MNHQ you need to understand that 'support' is rarely the issue for families and their children. It is the 'quality and appropriateness' of that support that is often the problem.

i.e. professional 'involvement' does not equal 'support' even though often the professionals involved like to call it that.

AnnMumsnet (MNHQ) Fri 16-Nov-12 19:08:35

As Rowan has said earlier...she will (honestly) take all this feedback on board.....thanks.

mymatemax Fri 16-Nov-12 19:18:57

i've completed the questionnaire & fully support what MN are trying to achieve.
The questions were difficult to answer..
ds2 was very prem, we did have follow up following discharge.
he was then dx'd with GDD, we had follow up but no specific advice/support
he was then dx'd with CP, we had follow up but no specific advice
It was only aged 4 when he was dx's autistic we were offered formal advice.

Prior to this I googled lots, found a local SN preschool group & other parents offered advice.
However I answered yes to receiving advice after dx because we did after his ASD dx, the fact that he had been in the system & had pre existing dx is not taken in to account in the questionnaire.
Is GDD considered a DX?

coff33pot Fri 16-Nov-12 20:33:12

completed survey but not sure exactly what you are going to gain from it? its just one question confused

I wasnt believed, lack of experience, lack of proffessionals, lack of NHS funding, then had to go up country. 14 month battle not knowing what to do next. When I got dxs school didnt support but refused to act on statement. So that was a waste of paper. (not so now different school) Not LA issue it is schools issues Academy issues.

Camhs......support? NO after autism dx they wave you goodbye and that was the words I was told. Not enough ADHD support. No sn groups in area unless you want to travel miles for which is impossible for me and probably a lot of parents if you have children at school, jobs etc.

Didnt get offered anything. Researched and worked it out for myself as case of having to. Best support I have had? THIS board and the good people on it.

auntevil Fri 16-Nov-12 21:35:04

My DS's needs were picked up by the HV at the 2 year check - when they still existed.
Dx was pretty routine. Every little last speck of help has had to be fought for.
That is why so many of us on this board are feisty - we've had to be. Many of us are not naturally like it, but we've had to become extraordinarily assertive.
Some of the best support has been peer support - such as the SN pages.

EllenJaneisstillnotmyname Fri 16-Nov-12 22:51:41

I started filling it in and cancelled it, it didn't let me say what I wanted to.

DS2 was DXed quite young, at 3.5 but had already been attending a fantastic special nursery/preschool. Most of my support came from staff there. The paed did refer us to Earlybird, but it was just a repeat of advice already received at the SS, which had on site SALT, sensory integration therapy, music therapy and OT. I was gutted that he transferred to MS at 5! No support since then. At all.

zzzzz Fri 16-Nov-12 23:25:41

Can I make a suggestion about the questionnaire?

What about asking more focused questions?

Eg
Have you been assessed by SALT? Yes/no
Did SALT provide any on going support?yes/no
Was the advice useful?yes/no/none offered

Same for OT, EdPsych,GP,HV ....all the usual suspects.

Nice "other" bit at the end in case you missed someone.

Did dx lead to improved support?yes/no/no dx

I need to be very very clear that it is possible to have a very disabled child and for medical professionals to be unable to agree on dx, or to refuse dx because the label will be detrimental.

Mumtutu Fri 16-Nov-12 23:53:19

Not done survey as no formal diagnosis even though we access support from various sources for both DDs. But feel left out, so thought I would join in anyway, especially after the several glasses of wine that I have awarded to myself after stressful week.
What counts as a diagnosis? DD1 (12) currently seeing specialist CAMHS team for eating disorder/anxiety/OCD – no formal diagnosis though. After a year of CAMHS involvement, have just done ADOS assessment & DD1 to do ASIS assessment in Jan to see whether High Functioning Autism might be at root of rigidity of eating etc. So no dx yet but obviously we are already receiving support from CAMHS. And if not HFA, then don’t know if there is another diagnostic route to go down. But even if we don’t get a formal diagnosis, we will certainly look for support because DD’s issues put her at risk, restrict her life, and impact on the whole family in a huge way, everyday. No support offered to us as parents, but managed to get myself some counselling from a fantastic local voluntary organisation.

DD2 (6) has hypermobile joints which causes her some pain, tiredness and makes everyday things like running, writing, dressing etc more challenging. Also slight speech problems. Hypermobility confirmed by physio and paediatrician, physio told us it ‘doesn’t necessarily means she has hypermobility syndrome’. Does that count as a diagnosis? Her school runs a daily exercise session for children with various mobility & co-ordination issues, which she benefits from a lot, and again she will use this service for the long-term. So point here is , again, I’m not sure if she actually has a ‘diagnosis’ but she is receiving support from the state for her physical support needs.

Both have sensory issues, are gifted readers, and overly passive in some situations. By hovering silently through the MN SN forum, I have joined up some dots and gained much more insight than would have been possible by simply listening to professionals. Also useful are Hypermobility Association & B-eat website & forums, which I also flit about on.

To get both seen by relevant teams, I have had to push quite hard - especially to get seen by specialist CAMHS team as there was reluctance to accept she could have eating disorder so young. If I had known more about Aspergers in girls, I might have pushed harder earlier. We were clueless.

Hmmm, that was a long one sorry.

HotheadPaisan Sat 17-Nov-12 05:47:13

Mumtutu, have you looked at PDA?

HotheadPaisan Sat 17-Nov-12 05:50:25

AnnMumsnet, what panel are you referring to in the OP please?

signandsmile Sat 17-Nov-12 09:09:10

I just wanted to agree with the majority of posters above... we have had some fantastic support from some of the professionals, BUT only after we managed to navigate ourselves through the dross to the right people. angry sad

I sit both sides of the fence, (am a social worker myself) and with all that background, and knowledge of the legislation I found it tough to find relevant information, and to pursuade people that I did know what I was talking about with ds...

the other mums on here have been amazing, I have learnt so much and am so grateful for the time people have taken to support and inform me..

AgnesDiPesto Sat 17-Nov-12 09:23:24

I agree basically having read this I realised I have filled it in wrong as I got advice, but only because I had already found out what I was entitled to and knew to ask for it.

In terms of signposting and being helpful no, I was given incorrect advice mostly to fob me off

claw4 Sat 17-Nov-12 11:02:14

"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"

In my case most definitely not, all the brilliant advice, help and support i have received has been ONLY from MN's and posters such as Starlight and Agnes they have been my main sources of advice and support (although other MNers have helped me greatly too). Without them, i would have been swallowed up the system. Their advice has been invaluable and life changing.

I think Starlight even took the time to advice and support me , while she was in the process of giving birth grin you cannot get more caring and supportive than that!

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.

AnnMumsnet (MNHQ) Sat 17-Nov-12 12:04:52

HotheadPaisan - our research panel - Q&A and to sign up (you can leave when you like) here

claw4 Sat 17-Nov-12 12:42:16

Can i ask what you plan to do with this information once gathered?

and what you are hoping the outcome will be?

claw4 Sat 17-Nov-12 12:46:34

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

inappropriatelyemployed Sat 17-Nov-12 23:24:16

What sort of advice service are you anticipating offering? Generic basic advice is available in principle at every turn. Getting proper, effective help is key.

For that you have to fight - every step of the way because provision costs money. There's no point at all in signposting to services which simply don't exist in practice,

The people on this board a hugely knowledgeable and it would take some doing to offer a service of equal value to the posts on this board.

cory Sun 18-Nov-12 09:45:56

Do physio/CAHMS etc count as specialist authorities?

And what about SS called in because a professional doesn't actually believe your child's condition should be having such serious effects and suspects Munchausen/a parenting problem?

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