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There must be a way out of this mess but at the moment I can't see it.

(95 Posts)
NoHaudinMaWheest Tue 11-Mar-14 19:43:14

Dd has had mobility problems for about a year now. She has been thoroughly investigated and no physical cause found. Largely because nothing physical can be identified rather than because there are any obvious factors it is considered a psychosomatic condition and she has at last be referred to a psychotherapist at CAMHS. Even if this does help it will be a long process.

She uses a self-propelled wheelchair and as her school has a support base for physically disabled students, the whole school is very accessible so she has managed independently.

Since last week the problems have spread to her hands and arms. She is unable to move her right arm at all and has limited use of her left hand. Her legs are also worse so she now cannot stand even on crutches and her bum shuffling which she uses to get around at home is much more difficult.

She requires help with washing dressing and eating and is unable to write. She also can't get into her bed and is sleeping on the sofa.

The biggest immediate problem is that she can't self-propel and so can't go to school as she can't get around. School say they have no staff to push her. LA says it is not their problem as she doesn't have a statement. IPSEA say it is very much their problem and that there are emergency provisions which allow support to be put in place while waiting for a statement.

Quite apart from not wanting to go through the whole statementing thing again, I am wondering how long emergency provision will take. She isn't ill and desperately wants to be back in school.

As I have health problems myself and a Ds with considerable support needs, I am wondering how much longer I can keep going with the amount of physical help I am giving her but don't know if any help with that will be forthcoming.

I have been contacting every professional she is or has been involved with and other agencies but they always say they will get back but never do. I am currently waiting for 10 different people to contact me. (OK a couple are for ds.)

Any experience or advice welcome as are honks and hand holding.

ouryve Tue 11-Mar-14 19:56:43

It's an horrendous situation and I'm struggling to think what to suggest.

Are the school aware of the IPSEA advice?

HugAndRoll Tue 11-Mar-14 20:01:35

Surely school are breaking some sort of inclusion policy if they don't assist with her getting around school?

Sorry this is happenening, it's just not right that her access to school is funding related, she is entitled to a state education and the LEA need to provide the means for that to happen.

AliceinWinterWonderland Tue 11-Mar-14 20:12:57

I have been contacting every professional she is or has been involved with and other agencies but they always say they will get back but never do. I am currently waiting for 10 different people to contact me.

Okay. This may slightly increase your "to do" lists, but I would recontact them and remind them that you are awaiting a response from them. If they say they will contact you back, politely say something along the lines of "alright - if I don't hear from you within x days, I will be ringing back." Make it a short number of days - like 3-5.

I would see if IPSEA can give you detailed information that spells out why the school must provide assistance in pushing her, and bring that to the school's attention - in writing. And insist on a written response within 3 days, pointing out that while you are wrangling with this, she is unfairly being denied an education due to their unwillingness to accommodate her disability. Send a copy of this letter to the board of governors as well as the LA.

Might as well make them sit up and pay attention, right?

Levi174517 Tue 11-Mar-14 20:28:45

<holds hand> and offers a [HONK].

I agree with AliceinWinterWonderland you need to keep chasing these people. Sadly they aren't prioritising your daughter. I think it's disgraceful the school aren't helping your daughter to access the curriculum.

It's the squeaky wheel that gets the oil sadly.

thanks

Offers brew and cake to go with the [HONK]

Nigel1 Tue 11-Mar-14 20:51:10

This is tosh.
Other children within the school are supported by the school to access lessons. ASD/Dyslexics/ADHD/EBD etc.
The school is under an anticipatory duty under the Equality Act 2010 to plan for and provide support for children under these circumstances.
The duty is an absolute and is not necessarily connected with the statementing duty.
The school also has a further duty to provide auxiliary aids and services to the child. see www.equalityhumanrights.com/advice-and-guidance/guidance-for-employers/the-duty-to-make-reasonable-adjustments-for-disabled-people/providing-extra-equipment-or-aids/
Refer to para 8.23 SEN COde of Practice for guidance on this point. I would take the view that a child who is at risk becoming a school refuser is an emergency.
Any suggestion that the child will only get X [less than full time support] hrs of support a day/ week should be resisted with the utmost vigour.
It seems to me that the people you are talking to are clerks and not decision makers. Keep working your way up the food chain to get to the right person.
If you get desperate then IM me.

PolterGoose Tue 11-Mar-14 21:02:26

Message withdrawn at poster's request.

bochead Tue 11-Mar-14 21:13:45

MP & local councillor?

Kid in wheelchair can't get to school = no brainer for the local media?
?
Letter to director of children's services?

moosemama Tue 11-Mar-14 21:14:12

NHMW, I'm afraid I haven't anything useful to add to the very sensible advice you've already had.

My instant thought was that it's disability discrimination for the school to effectively exclude her by reason of her not being able to get around. Surely there are some procedures for children that become disabled without a statement in place, in fact I vaguely remember being told at some point that a statement isn't necessary for disability access provision, as it comes under a different category.

I wish my blooming brain would work so I could remember who said it and where to look it up. If it comes back to me I'll come straight back and post.

In the meantime. I know it doesn't mean when what you need is at the moment good solid advice, much but I'm sending you a (hug) and reminding you that you are doing an amazing job. I know you have similar difficulties to me and I'm in awe of how much you have been battling on through despite your own health issues. Even if I can't help very much with practical advice etc I want you to know I do understand where you're coming from and how desperate you must be feeling. If you ever need to talk to someone offline, please don't hesitate to pm me. flowers

NoHaudinMaWheest Tue 11-Mar-14 21:26:49

IPSEA are going to email the detailed advice and I will go with that but even if it is quicker than usual statementing process it will still be too long. I want dd back to school next week at the latest.
SENCO has said she simply has no staff to allocate to pushing duties. Her solution is for dd to get an electric wheelchair. I can hear you all laughing hollowly at the ease of access that. It is also against medical advice which is to keep her moving as much as she can (agree with that) and minimize interventions to avoid reinforcing the psychological issues (not so sure about that). Actually latter is the reason I haven't applied for DLA as I think that professional advice may well be that is reinforcing her disability.

We (dh and I) have met the psychotherapist briefly. We have our first parental assessment meeting with her tomorrow. She wants to do 2-3 parental meetings then 5-6 assessment meetings with dd after Easter, then if she thinks dd is suitable she with start the actual therapy so it is no quick fix.

I have contacted the psychologist dd was seeing for inital assessment and who has continued to see her while we were waiting for the CAMHS referral as she actually knows dd. She emailed back almost immediately but as technically she has discharged dd she has referred it to CAMHS for futher intervention and (surprise, surprise) I haven't heard a dickie bird from them.

I will go back to LA tomorrow armed with IPSEA and Nigel's advice.

Physio has been most proactive and was going to throw her weight about. At least she has put school right on pushing the wheelchair being a health and safety issue. 'Why do you think they have handles?' she said.

She was also going to contact OT who had discharged dd. Given their enormous waiting lists and the battle I am currently having with them re ds I think she will probably make more progress than me.

Dd is definitely not a school refuser. If it was physically possible for her to get to school and around it when she is there wild horses wouldn't keep her away.

Finally looks like she is going to miss her science trip to @Bristol on Saturday. sad

AgnesDiPesto Tue 11-Mar-14 21:46:39

Look up 2013 govt guidance 'ensuring a good education for children who can't attend school because of health needs'. The duty is on the LA to provide full time education eg at hospital school or home tuition and to maintain links with current school. LA should have named person responsible for children with health needs. Obviously you want her in own school but no harm pointing out their duties to step in if she can't go.
Other option to stay in school is Equality Act. Schools have to make reasonable adjustments and provide aids and adaptations. See here this actually refers to an auxiliary service being someone to push a wheelchair!
Follow up LA discussion that it's not their problem in writing quoting back at them what they said. Sorry but that paper trail is important.
Also make a formal complaint on council website.
Then complain to Local Govt Ombudsman who will take cases where children are out of school before have gone through complaint process.
Contact your MP and ask to write to council.
You could threaten disability tribunal but tbh kicking up fuss, complaint, MP and LGO (even if complaint is just registered) likely to be quicker.
Also ask in writing for more social care support / reassessment by disabled children's team of family situation and see if can increase / provide more eg more direct payment care hours

hazeyjane Tue 11-Mar-14 22:16:11

I'm really sorry, NoHaudin, I have no advice, I just hope you can sort something out for your dd soon. Honking for you.

zzzzz Tue 11-Mar-14 22:51:05

Oh NoHauldin how awful. So many honks for you and yours. sad

Everyone has given you good advice (though I wouldn't be thinking media in your situation). Surely it's not too much to ask for someone to push her to her classroom?

On a practical note, I have very painful hands/joints. They also cramp up and are a bit useless sometimes. I also have an aversion to Drs. The pain has been going on for years on and off and I did see a rheumatologist about twenty years ago who suggested a very hot bath and moving in the water vigorously for five minutes before I started the day. I've tried many drugs but the heat/exercise combo is the only thing that has ever really helped. Try it on the off chance because it might make her more comfortable which would be a start wouldn't it?

Are school sending work home? Is she able to see friends?

I'd also like to echo the "time to think about a bungalow" vibe from polt. I should have stuck my toes in and insisted on an easier house last time we moved. It would change everything not to have the endless stairs.

lougle Tue 11-Mar-14 22:58:27

I'm flabberghasted.

Are you as sure as you can be that they are right about it being psychological? It sounds....odd...if she isn't a school refuser and doesn't want to miss school, it doesn't get her the opportunity to avoid anything, she can't physically move one arm but does move another, albeit in a limited way....if it were psychological I'd think that I'd expect both arms to be similarly affected - why would she be able to move one and not the other??

Do either of these sound familiar when you think of her history (I'm not trying to counter the professionals, but it's worth thinking..)

"Multifocal motor neuropathy (MMN). This rare, asymmetric inflammatory neuropathy affects multiple motor nerves. Major features are the slow or stepwise development of weakness of initially distal muscles in the upper limb, i.e., the hand, more so than the lower limb. Sensory nerve fibers are not affected.

Multifocal acquired demyelinating sensory and motor neuropathy
(MADSAM). Also called Lewis Sumner syndrome after two neurologists
who described it, this neuropathy is another rare variant of CIDP. It shares many features with multifocal motor neuropathy, but in addition to
asymmetric weakness, the patient experiences sensory changes, i.e., tingling or loss of sensation, in the distribution of the damaged nerves."

At the very least, your DD is unable to attend school due to a medical condition. If she is too ill to attend school (she is ill, btw, whether physical or mental cause, and it's her illness that is preventing her attendance at school) for 15 days or more, the LA must provide tuition of 5 hours or more. I'd point that out and ask for the plan.

AliceinWinterWonderland Wed 12-Mar-14 06:34:32

NoHaudlin I have to agree with lougle on this part. Just because the medical professionals haven't found a specific physical cause, that doesn't mean there isn't one. It just means they haven't found it. I would be distinctly uncomfortable with them saying "oh it's got to be psychosomatic" and then saying that aiding her is against medical advice.

I'm afraid you're currently in a position of needing to play tough with both the medical professionals AND the school right now. lougle's information regarding the LA being required to provide tuition of 5 hours or more needs to be brought to their attention. You need to come down hard and fast on the school - put them on the back foot - in writing demand to know what they're going to do to remedy this situation, as they are currently discriminating against your DD. Take it all the way up the food chain, while speaking to a few solicitors (or through IPSEA) about ways to force the issue with the school. Make it very clear to them that unless they fall into line, you WILL take it further and it will cost them a hell of a lot more than a little staffing expense.

Galena Wed 12-Mar-14 06:48:45

NoHaudin, no advice I'm afraid, except something possibly irrelevant I will pm you, but honk, honk, honk! it's a very hard situation and I hope following the others' advice gets you some help. ((hugs)) you are doing a fantastic job.

Ineedmorepatience Wed 12-Mar-14 08:09:11

Nothing to add nohaudin but am honking and flapping for you and your Dd sad

moosemama Wed 12-Mar-14 09:48:45

I second Lougle's advice to make the LA aware that they have to supply home tuition if no-one is going to do anything to get dd back into school. Our LA was so hot on it they wanted to put ds1 straight onto the Missing From Education register last Friday. LA Officer said it would ensure his access to tutors while he couldn't access school.

Have IPSEA allocated you a case worker? When I spoke to them around ds's statement and placement they said because I had health problems myself they could allocate a barrister to help with everything. As it turned out we didn't need it, but if they could do that for me with no dx they can do the same for you and it will take a load of the stress of your shoulders.

MariaNotChristmas Wed 12-Mar-14 14:16:23

*Since last week, she is unable to move her right arm at all and has limited use of her left hand. Her legs are also worse so she now cannot stand even on crutches

... bum shuffling... is much more difficult.
...requires help with washing dressing and eating
...unable to write.
...can't get into her bed and is sleeping on the sofa*

Isn't this an emergency?

Quite suddenly, and without a decent explanation, she has gone from being a child who used a wheelchair, despite professional suspicions that she didn't 'really' (aka physically/ 'medically') need one. She's now, quite abruptly, become sufficiently disabled as to need pretty much 24 hour support for every aspect of daily living.

It's pretty irrelevant whether the underlying cause is mental, physical, or a mixture of both. Something has got a lot worse, or else something new has happened on top of the old stuff. And the effects are quite serious. And either way, she'll need some rehabilitation.

I know you haven't said anyone thinks she has MFS/ME, but the way that those specialist services go about things might be the sort of approach you're looking for. "Medically unexplained symptoms" can be ignored as 'pschosomatic' if they're obviously not due to serious physical or mental illness and cause minimal functional disability. But even (especially?) if it's psychosomatic, this problem probably needs to be properly assessed and tackled given how it's affecting her.

I agree with Lougle, that her 'physical' paediatrician may want to know, so they can review her and have another think about things. And the CAMHS people (if it is psychosomatic) need to hurry up and assist.

zzzzz Wed 12-Mar-14 14:25:18

Actually I think maria's post has given me a jolt.

What on earth was I thinking suggesting baths etc???

Your child's arm has stopped working, her other arm is compromised! shock

Sometimes I think we are all just too desensitised to all this.

Any other child would be at A&E because it IS an emergency.

Go and sit there until they DO something to help the poor child.

MariaNotChristmas Wed 12-Mar-14 15:07:58

Yep, i think we're being a bit too relaxed. Not that there is necessarily anything serious going on, it may be a blip, but, NoHaudinDD's pre-existing medical or mental state notwithstanding, there need to be proper checks.
Firstly, that nothing new (maybe unrelated) has happened to cause it. Secondly, it all still fits with the previous assumed cause(s)
Thirdly, if so, why has it got so much worse now,
and finally, what can be done to reverse it.

That lot goes before figuring out how to 'live around' the problems. I think we're (generally) all very 'disability-is-normal' here. And everyone posting on MNSN generally concentrates on a very practical-problem-solving, get-an-education, life-goes-on, how-to-cope-better approach.

Which is right and proper, most of the time, cos who else but us is actually going to do anything useful for our dc.

But when a child suddenly, and without explanation, loses the use of their limbs, it really is the NHS's problem first and foremost.

zzzzz Wed 12-Mar-14 15:13:48

But when a child suddenly, and without explanation, loses the use of their limbs, it really is the NHS's problem first and foremost.

^^^^^^ THIS ^^^^^^^

HONK HONK HONK HONK HONK HONK

PolterGoose Wed 12-Mar-14 15:54:45

Message withdrawn at poster's request.

NoHaudinMaWheest Wed 12-Mar-14 16:49:34

I have left a message for the paediatrician but no reply. The physio was also going to contact her. GP thought it better to stick to the CAMHS route but I haven't heard again from him. I will phone tomorrow and ask him to contact paed too. I know I won't get hold of him today.

The psychologist dd has been seeing is involved again as she is only CAMHS person who knows dd. They are doing a psychiatrist referral and meantime continuing with the psychotherapy plan. We had first meeting today (parents only). She seemed ok as far as it is possible to judge and felt that trying to speed up her plan was likely to be counter productive. I agree that if that is the right route it is a slow process.

Psychologist is also doing a referral to Integrated Child Services (ie SS, OT etc).

School and CSET are still playing ping-pong. PP is involved. Their worker is on the ball it seems. She says that responsibility is with school and they need to ask LA for more funding if they need it. She is going to contact deputy head in charge of SEN with whom she has good relationship to get some idea of the way forward.

I have something of a feeling of deja vu. Although his issues were very different' I felt I was just being passed around when ds first hit crisis because no one really knew what to do with him either.

At least I am now better prepared and have the MNSN geese behind me.

thanks for you all.

zzzzz Wed 12-Mar-14 17:18:14

If it is the secretary I think it is call again Thursday for Friday works very well. wink Be firm.

ICS are very nice on the phone but progress seems non existent slow for us. This outsourceing to Virgin is weird.

Im surprised they are so laid back and softly softly, I would have thought the longer the behaviour was manifested the more difficult to stop? Certainly thats the vibe with selective mutism/anxiety.

I cant remember what happened when she was admitted for obs. I think its got lost in my own boring illness last year. Did they come to any conclusions at all?

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