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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.

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.

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