Please note: This topic is for discussions about the surveys Mumsnet is running. It's not the place for promoting other surveys or market-research requests. If you do that here, we may well delete your thread. If you'd like to discuss running a (largish-scale) survey about your product or business on Mumsnet, please feel free to mail us at insight@mumsnet.com.

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 11:56:52

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.

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 Fri 16-Nov-12 12:22:59

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 (MNHQ) Fri 16-Nov-12 12:24:08

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 Fri 16-Nov-12 12:31:54

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. sad

Lougle Fri 16-Nov-12 12:42:28

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 (MNHQ) Fri 16-Nov-12 13:00:20

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 (shock at that by the way) as though your true answer should have been 'no'?

Lougle Fri 16-Nov-12 13:21:09

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' wink

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 Fri 16-Nov-12 13:22:17

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

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

sickofsocalledexperts Fri 16-Nov-12 13:31:55

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 Fri 16-Nov-12 13:37:35

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 (MNHQ) Fri 16-Nov-12 13:44:55

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 Fri 16-Nov-12 13:48:47

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 Fri 16-Nov-12 13:53:06

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

claw4 Fri 16-Nov-12 14:22:05

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 Fri 16-Nov-12 14:29:11

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 Fri 16-Nov-12 14:46:28

I just filled it in without questioning itgrin

Am too knackered today,

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

Tiggles Fri 16-Nov-12 15:11:01

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 Fri 16-Nov-12 15:11:51

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 Fri 16-Nov-12 15:34:00

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.

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 Fri 16-Nov-12 15:41:28

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 Fri 16-Nov-12 15:51:00

I agreed with madwoman I'm afraid.

Lougle Fri 16-Nov-12 15:57:23

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 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?

Turningupsidedown Sun 18-Nov-12 13:32:30

I have done the survey. Agree it seems very limited as a questionnaire and unusual not to explain what the full purpose of research is?

We were lucky to get dx quite easily. Went to GP who is great, he wrote very detailed referral to paed. Got appointment 6 months later and dx'd straight away. But that was it. We got a badly written letter, a leaflet and a very confusing photocopied 2-page article. There was nothing else at all, it was just a case of yep this is the dx now off you go. I remember feeling totally bewildered and just wondering but what do I do now?

This was around 4 years ago and a bit of googling and I found this section of MN. I do not know what I would have done otherwise. The advice on here was then and is now absolutely brilliant and I would not have coped without it. One MN'er took the time to post me a disc containing masses of resources she had created herself to help her own DS. It was by miles better than anything I got in RL. I haven't been around for a bit for various reasons but a recent problem brought me back to find the same amazing advice and support. Posted a question on this section the other week and instantly got brilliant suggestions and advice.

The posters who are on here all the time, with their vast collective knowledge spending so much time helping others are amazing. Nothing can beat this in RL thanks

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

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 Sun 18-Nov-12 17:57:02

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 Sun 18-Nov-12 17:57:59

"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 grin We're dangerous to the budgets of LAs wink

HotheadPaisan Sun 18-Nov-12 18:02:52

Maybe MN just want to help?

Lougle Sun 18-Nov-12 18:06:30

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.

HotheadPaisan Sun 18-Nov-12 18:11:46

Yes, agree with that, would be better to put something out for discussion or with more explanation.

HotheadPaisan Sun 18-Nov-12 18:21:47

Actually the survey does say, I think a 1-2-1 service would be good. I like crowdsourcing info but it can be a bit much when you're new to it all. I think it all needs a flow chart, that would work along with all the info on the right there somewhere and then someone to discuss it all with.

It could work well, maybe there is funding, I saw a funding round released recently, would be great if MN provided 1-2-1 as well as the info and forums. I could only take so much in at any one time and actually did everything in the wrong order but it all came together in the end. I did feel on my own apart from here though, no-one else does really understand and it's difficult to be completely open and honest in RL for lots of reasons, not least of all because no-one really understands!

Imagine if you could discuss it all with one person, the whole thing. And I'd hope people are paid for working and providing that info and advice.

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 Sun 18-Nov-12 18:46:19

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.

zzzzz Sun 18-Nov-12 18:46:26

HotHead I'm sure they just want to help. I also think the easiest thing on earth is to describe the parents of sn children as paranoid, touchy, grumpy individuals. The truth is lots of people try to help, but are so misguided they really have little understanding of what does help.

I have very little time, to give you an idea of how long I takes to parent a sn child compared to a run of the mill average little peep. It has taken 6 hours to try and organise meds for dd this week ( they are the same repeat prescription she has each month), 5 phone calls, 2 trips to the pharmacy, and they will be calling next Wednesday to say if they can get them. They are life saving. 30 mins teachers meeting, 14 doses of said medicine which takes 7 minutes to grind mix and administer. The drugs need reordering in a week and we have a hospital appointment on Friday. This is my easy sn child, her brother requires rather more input as he needs home ed and a lot of hand over hand help. I have other children, a house and husband and various needy close relatives.

I'm sure I'm describing nothing out of the ordinary on this board, and that in comparison to most I am living a relatively easy life.

Repeating what is already available is a waste of EVERYONE'S time. Focused help is what is needed. Empowerment is what is needed. Our board is great, but it would be lovely if we heard more happy stories.

I'm home schooling one child now. We follow a semi-Montessori curriculum, and he is flowering. Montessori education can be summed up in a single quote "help me to do it for myself" . It's time to help the parents of sn children in the UK. The provision is embarrassingly awful. But if you want to really help, help the parents to do their job, give us information, access to required therapies, respite, equipment, not more waffle.

slightlycrumpled Sun 18-Nov-12 18:53:30

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 smile.

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.

HotheadPaisan Sun 18-Nov-12 18:56:33

Agree education and even health DPs are the way forward, as with social care.

Lougle Sun 18-Nov-12 18:57:55

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.

HotheadPaisan Sun 18-Nov-12 19:00:24

There is only so much you can take in, a mentor or 1-2-1 service is a good idea but it would need to be ongoing. There are so many parallel and some sequential paths that it takes some doing just to keep on top of it all.

I dropped health as I just didn't have the energy to challenge that one, going back to it now though because it is needed. As is a break.

HotheadPaisan Sun 18-Nov-12 19:04:38

Agree there needs to be a centralised parent-led directory of resources, pathways and useful bits of law and so on, including sample statements. But even then I took any old info in DS1's statement just to get the hours, I will amend it all at AR and will have an early AR so there is time to disagree, finalise and appeal, I could not have taken this on first time round.

slightlycrumpled Sun 18-Nov-12 19:06:33

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

slightlycrumpled Sun 18-Nov-12 19:06:47

Vast not cast obv!

zzzzz Sun 18-Nov-12 19:07:58

It would be a start if LA could be upfront about what help IS available. I am so sick of people (even teachers) thinking that there are magical ss where children will be cosseted through their education. As for the concept that sitting with a TA in the corridor is somehow inclusive, an education, something to jealous of, please.

Oh and ds couldn't have SALT input because he "might" be autistic, the other option being severe language disorder (I think the Language aspect of that might give a clue as to who was an appropriate therapist hmm).

hazeyjane Sun 18-Nov-12 19:08:05

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.

zzzzz Sun 18-Nov-12 19:15:52

Yes the charity side of things is a shocker.

How does it happen that life saving medical equipment distribution is run by a charity? (I'm thinking epilepsy monitors Muir Maxwell).

Fantastic people but how would the rest of the country feel if they had to accept that the machine that would warn them their child was having a life threatening seizure would take was over subscribed and just to watch her all night FOR 6 months.

ThatVikRinA22 Sun 18-Nov-12 19:16:50

done the survey hq.

zzzzz Sun 18-Nov-12 19:17:11

hazey I hope mnLocal will help with that.

madwomanintheattic Sun 18-Nov-12 22:30:56

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.

zzzzz Sun 18-Nov-12 23:06:16

Contact a family don't operate in Devon. Then again Devon doesn't exactly excell in sn provision.

I would like providers to be made to list available services in each area and be held accountable if there aren't any.

madwomanintheattic Sun 18-Nov-12 23:23:03

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 Sun 18-Nov-12 23:29:51

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.

zzzzz Sun 18-Nov-12 23:48:29

I agree that duplication of services is one of the problems. "fragmented service" is a good way of describing it, but there are problems with trying to revamp something that isn't working.

Devon is not really anything like the outer Hebrides. There are large numbers of disabled children living here, on the whole unsupported.

I think transparency is what's needed.

madwomanintheattic Mon 19-Nov-12 00:36:47

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.

zzzzz Mon 19-Nov-12 01:48:50

I doubt yet another charity providing less than comprehensive advice would help either. Nor do I think lobbing extra money and expanding the remit of a charity is likely to do much more.

It is not even slightly unreasonable to expect a list of what is available and who qualifies and how for each region/disability. The information on courses can be put together for entry to university including number of places, rankings, entry requirements and how to apply. Surely this isn't beyond us as a country?

It's not isolated cases that receive poor provision, it's quite the opposite. It is rare for sn children to receive comprehensive joined up provision. We can and should do better.

madwomanintheattic Mon 19-Nov-12 06:04:46

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. <sigh>

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 Mon 19-Nov-12 06:06:32

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

hazeyjane Mon 19-Nov-12 08:55:23

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 Mon 19-Nov-12 14:18:40

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 Mon 19-Nov-12 14:50:46

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 Mon 19-Nov-12 18:05:30

<wails>
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 <and am aware of the irony of this> 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 Mon 19-Nov-12 18:07:13

<actually, what I would be doing is getting the government researchers onto this and designing a survey that actually provides some data, and letting it loose on the sn world. There'd be difficulty capturing participants without them self selecting, but it would be possible>

I don't think they really want to know, though.

Lougle Mon 19-Nov-12 18:56:45

"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 blush

RowanMumsnet (MNHQ) Mon 19-Nov-12 21:21:14

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 grin)

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 Mon 19-Nov-12 21:52:46

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? grin

I've done some work with kids.grin

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.

HotheadPaisan Mon 19-Nov-12 21:54:29

My LA has in the last year or so put all the relevant health, social care and education info online in one place, it would have been fantastic if all this had been there a couple of years ago.

HotheadPaisan Mon 19-Nov-12 22:00:58

Also something MN do well is campaigns, maybe something could be done over the next year or so as the proposed SEN reforms work their way through the system.

zzzzz Mon 19-Nov-12 22:08:53

smile some of this sounds good.

The more you listen the more you'll learn. Some real help to make things better would be much appreciated.

Let's not waste any more of our children.

Lougle Mon 19-Nov-12 22:31:12

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 <ahem> independent sources, that it's as clear as it sounds.

HotheadPaisan Mon 19-Nov-12 22:37:15

Do you there is no CAF office here, no wonder I just had to work it out myself and ask a million questions on here. There was nothing online locally, absolutely nothing when I was looking just a year or two ago.

HotheadPaisan Mon 19-Nov-12 22:49:29

I found a CAF contact, no-one listed on CAF's website though. I also found this, it doesn't cover health and social care though:

New SEN National Advice Service
Contact a Family has been awarded the Department for Education contract to include a Special Educational Needs advisory service within their existing range of services for families.

The new SEN National Advice Service will be part of their integrated Helpline/Online service for families. It is staffed by experienced SEN advisers. It is a one stop shop for parents and other family members caring for a child with SEN, on all education issues.

The telephone helpline enables parents and carers to get one-to-one, in-depth and personalised advice from fully-trained SEN advisers.

CaF also offer online services for more general advice and guidance, via email, the website, facebook and twitter to enable families to engage with CaF and with each other.

The SEN service covers comprehensive advice on a broad range of issues related to special educational needs in any education setting, including:
• Early years/portage
• School Action and Action Plus
• Individual Education Plans (IEPs)
• Statutory Assessments
• Statements
• Transition Planning
• 139A assessments and post-16
provision
• Home education
• Bullying
• Exclusions
• School transport
• 16 – 19 Bursary Fund

zzzzz Tue 20-Nov-12 11:03:41

And yet none of us appear to have benefited from this amazingly comprehensive service.

zzzzz Tue 20-Nov-12 11:06:24

Though obviously I'm in Devon so like those in the outer Hebrides, don't mind if my taxes are only used for out of county sn children. hmm

Handywoman Tue 20-Nov-12 13:08:46

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

HW x

HotheadPaisan Tue 20-Nov-12 13:18:11

And I wish it was called different, specialist or additional need. What DS1 needs isn't special, it's just what he needs to function and benefit in life.

peasonaterrapin Tue 20-Nov-12 13:58:04

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.

madwomanintheattic Tue 20-Nov-12 14:30:32

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. grin

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... <ponders>

zzzzz Tue 20-Nov-12 14:44:53

A little more transparency would go a long way to stopping the post code lottery, and stop the awful "lucky" sn given tons of help vibe.

Devon feels a little Siberian steppes rather than Hebridean. smile.

HotheadPaisan Tue 20-Nov-12 14:50:33

peas, hello!

If OT and SALT is needed for your DS to access education get it in the statement, apply for a statement early so there is plenty of time to finalise and appeal if necessary. I let health drop because I just couldn't deal with that at the time but we are back there with a vengeance now and I will try and get something in at annual review.

For me not at the expense of the school choice and support hours though. A good school with enough hours and good TAs can do the sensory circuits and social skills work DS1 needs.

HotheadPaisan Tue 20-Nov-12 14:55:45

Meanwhile, back at the ranch, we are going to have fight to stand still: ipsea.blogspot.co.uk/2012/11/has-minister-reassured-ipsea.html

AmberLeaf Tue 20-Nov-12 14:58:20

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.

HotheadPaisan Tue 20-Nov-12 15:08:26

We were discharged on the day of diagnosis, I think I was given a leaflet pointing me to NAS, I was so bewildered I didn't really register.

Best support for us was from the Specialist Teaching Team, that was all education though, nothing on health and social care, I pieced it all together myself with help from MNSN.

HotheadPaisan Tue 20-Nov-12 15:09:59

I go with lack of will and inability to get the right info from all points on the triangle and take responsibility for publishing it rather than deliberate obfuscation, as peas said it is all there in one place for us now.

madwomanintheattic Tue 20-Nov-12 15:34:37

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. grin

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...

TheLightPassenger Tue 20-Nov-12 16:16:13

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 shock.

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

HotheadPaisan Tue 20-Nov-12 21:40:31

Re: hiding services, my LA's latest strategy doc acknowledges there are something like a 1000 children with SEND missing from their books, I might have made the figure up but it's a lot and they know these kids are out there. I really think we're seeing a sea change and recognitions that LAs have to find the funding. As the SEND depts up their game, the rest of the authority has to listen and provide.

We are quite in debt actually, think they are cutting back on the legal side, for financial and genuine reasons, they are looking to plug the gaps in the provision and stop funding expensive out of county placements that no-one really wants, it's just that there is nothing else.

bochead Wed 21-Nov-12 00:23:58

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.

zzzzz Wed 21-Nov-12 06:44:25

Very well put boc

Lougle Wed 21-Nov-12 06:50:48

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.

Oblomov Wed 21-Nov-12 07:05:58

Done.

HotheadPaisan Wed 21-Nov-12 07:45:10

If the reforms go ahead as they stand things are really going to get worse: ipsea.blogspot.co.uk/

TheLightPassenger Wed 21-Nov-12 07:58:39

agree with bochead.

zzzzz Wed 21-Nov-12 09:14:14

I don't think "we seem snippy" at all. I think we are adults and equal and finding this unpalatable is not unreasonable.

This makes me feel like someone's project.

I feel ever more that I am living under apartheid. Yes there are some kindly white humans, but I can't keep expending so much energy "not being offended" by their benevolence.

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.

Lougle Wed 21-Nov-12 09:27:49

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

coff33pot Wed 21-Nov-12 12:31:57

Agree with bochead

inappropriatelyemployed Thu 22-Nov-12 18:22:36

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!

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