Assessment from an OT and CPN RE equipment

[misscutandstick]

They are popping round tomorrow to do an assessment of any equipment that DS5 might need, I asked for a Major and they want to see if theres anything else they can offer, which i think is nice of them.

My mum said today "what if they say you cant have one?"

i was puzzled, as ive never come across a thread where someone has been denied one, that i can remember.

Has anyone been turned down? what reason would they give? I thought that asking for one was reason enough to be given one? or is that not how it works? thanks in advance for any thoughts shared. XXX

we just had ours, they look at why you need one,then here in Essex they refered us over to wheelchair services and herd today well yesterday his wheelchair is in .
and at the house in ds case it was decided they need do something about the steepsteps back and front.There putting on a stable door to my kitchen so can keep ds out safley and see him while im cooking
Also that there going provide something to help with ds getting into bath

Mind I dont trustthem till it happen

Phoenix, they tried talking me into a wheelchair. i said no as he really doesnt need that amount of support, just a bigger buggy than he has as hes growing out of it. We have been all over looking for a bigger buggy but they dont seem to make them, it seems that little bucket seat ones are all the in-thing even the seats are shallow. i want one cos hes not up to walking f/t outside yet, he hasnt much stamina and hes still a bit wobbly.

The only other prob we have, is that he keeps climbing up his wardrobe - i know, not good at walking but climbs like a monkey! But im not sure they can do anything about that.

anyone else heard of a refusal?

No problems here, just asked his OT & hey presto a m/buggy was delivered.
Same thing when we swapped to a w/chair, just asked his physio.

His OT also looked at his needs at home & school, but TBH he sisn't need any additional equipment at that time, they said just to shout if we need anything.

i can't remember how old ds5 is... but if he will be starting school in the nearish future they do prefer to give a wc rather than a major, as it is more appropriate age-wise for things like school trips etc. we have a wc from wc services and a major we bought from e-bay lol. oh, and an all terrain 3 wheeler for dog walking... (wc services only provide 1) she also has a croc walker for the playground so that she can join in with less risk of falling... nb this doesn't always work lol...

we also have stair gate at the top (to prevent falls obv), toilet surrounds (just rails - we've taken off the seat/ chest harness bit as no longer required), supportive seating for dining chair, extra rails on the stairs (both sides), rails and low profile entrance front and back to garden...

um, think that's about it... some more stuff for you to muse over anyway...

not sure if fine motor stuff is relevant? our OT also advises on cutlery/ feeding utensils/ bowls/ plates etc...

Yes I know of a refusal but they gave in to persistent pressure!

Here, the Community OT does kitchen seating...

Hosp OT does wheelchair..

Social Services OT does access to house, assisted washing and toiletting, accessible bed...

social services find and fund helpers to use above equipment...

...I sit back, put feet up, open beer, light fag and let them get on with it...

(can dream can't I?)

BTW, we have big pushchair (Lightning, american brand from nhs) because I prefer pushing it to standard w/ch. DD is nearly 7, Hosp OT said some parents don't think it appropriate for larger child to be in buggy and want w/ch so gave us the choice.

thanks

definately things to think about. He doesnt/cant use forks yet, but is a whizz with a spoon . hes still in a high chair as he doesnt eat otherwise, and hes FTT, so he hasnt any weight spare! And hes generally OK on stairs as hes learnt to shuffle up and down them - but we still have gates for off days.

DS5 is just 3, with mild hypermobility and hypotonia. He has GDD and behaves more like a 12-18mth child, so I dont think that 'age appropriate' would apply would it? it certainly wouldnt occur to him that other children his chronological age arent in buggies, and definately wouldnt understand any questions or teasing. He starts Nursery in sept.

I think the ot meant it was the parents didn't want their child in a buggy.

Sorry, whats FTT? Being thick today.

the old term 'failure to thrive', think its 'faultering growth' now, but TBH that would imply SOME growth!

Of course - had one with FTT myself!!! Duh

ah, got you on the age thing - basically its the parents choice in your area. I just think DS5 will look really silly in a w/c and would look more appropriate in a buggy because of his baby-like bodylanguage and general 'aura' IYSWIM, rather than in a W/C which would look very odd (IMO).

PS hope i havent offended anyone by my last statement - im simply talking about my child, not children in general. X

the "aura". Can I have one?

dontcha find that some people exude "cheeryness" and some seem "c-a-l-m", some people seem to be forever in a 'fluster', and some have that "wisest one"... without ever having said a word? perhaps its just me

well, DS5 has a very 'young' one, and some people seem naturally speak to him as tho hes only a baby, when in fact hes just 3. Then theres the really dim ones that ask him his name over and over...

i suspect mine may be set on 'fluster' lol.

we only switched to wc for school, so approaching 5 - you've got plenty of time to think about that sort of thing.

well they have been...

Im not really sure what to make of it all. They stayed for about an hour, they were lovely people. They said they had assessment sheets, but they never assessed anything. The OT said she didnt do equipment, and that could she refer to physio as she didnt do that sort of work... ok so what DOES she do exactly then?

The CPN too was lovely. She could help with nappies if he still needed them when he was 4 (useful to know, must keep that in mind, but they only issue 4 a day ) and maybe she could have a chat to school about his care needs (surely if ive got this far, ive got that covered too?). It was very nice of them to pop out and see me tho.

And the Major is on order - expect delivery within 4wks. and a referral to physio.

May be im just too gosh darn organised!

while you're being organised, write their names and phone numbers down in case you need them again in a few months!!

Re the nappies - can't believe you would only get 4 a day - we go through 6 or more! Ours are via nhs ( dd nearly 7).

did she sit and play and do the fine motor assessment?

like mmb said, sometimes you get 3 or so OTs and they are all responsible for different things lol. apparently it's an effective way to manage the workload...

oh, lucky you for nappies at 4 yo btw - a lot of pcts have gone to 5 yo before they will supply now!

But you can't buy nappies to fit a nearly-five-y-o if they're still incontinent!!! what are SN parents supposed to do?

size 6 or drynites go up to 8-15. size 6 only works if they're skinny lol. (have been known to wedge a 6yo into a size 6 in an emergency...)

didn't help me anyway lol. dd2 with a disability was dry day and night at 2, it was my two NT dcs that were having long term trouble with continence. hey ho.

glad you got the Major on order anyway!

re nappies-we only get 3 a day !!!! School changes him twice at least. We have to buy extra from the continence shop.

We only get 4 a day aswell for my 4 year old. He needs changing at least 8 times a day, plus once in the night. Am shocked at the only providing from age 5, and also how is 3 a day supposed to meed the need. Luckily his school gets a seperate supply for him, and he is changed 4 times at school. But they often run out of his nappies before the next delivery to them. We are working with the school at the moment to get the amount increased, but is such a hassle.

Well done with the major by the way!
I have heart that some trusts are no longer supplying them,
absolutely ridiculous!

obviously I have heard