wheelchair assement by ot. is this reasonable?

[oililymad]

hi
i have a 2 year old that needs oxygen at times during the day and when asleep.
i also have a 4 year old son that cannot walk without severe pain that is probably caused by a tethered spinal cord he also has low muscle tone hyperextensive joints and gets very tired. he can only walk short distances at all even with pain meds.

we had the assesment for a larger buggy or wheelchair and they offered us a maclaren major as expected. However i was prepared and had done my homework so i knew that they COULD give us something better, that lay flat that i could get my daughters oxygen on and her monitors etc.

the OT says that they have been asked to provide something for ds not dd.
i tried to explain that i wasnt asking for something for dd just for ds that i could pay for extra bits for dd's equipment ( even though i don't see why i should).
she said its the nhs and i asking for too much!!!
i only want to take my children out and if i cant get something to put the oxygen on for dd and have something that at least reclines for ds when he conks asleep then there is no point giving anything as it will not help us get out.

i kicked up enough to get her to agree to discuss it with her boss, and now there is a meeting on the 14th to discuss what ds can or cannot have.
what if they say no? is there any appeal? the buggy we want is a jazz easys and it looks great and i can turn the seat round so that ds can see me as he has major panic attacks over all sorts of stuff.

i guess it boils down to money a maclaren is 200 and the jazz is about 1800.

am i being unreasonable?

many thanks for any advice

You should contact the charity Whizz Kidz, they help with funding for wheelchairs, buggies etc, they maybe more help to yourself. I know the NHS are very poor in providing more than the bog standard.
www.whizz-kidz.org.uk

thanks for that.
the ot told us about whizz kidz, but also told us they have a waiting list. has anyone used them?
i dont want something fancy, just to get the oxygen on. is that asking too much?

we got dd a sn trike through whizz kidz about 4 years ago
the application side and acceptance was quick but it took alot of chasing up to get the trike delivered
but dd has loved it(and we're very grateful that they gave her it, just sad that by the end of the year she will have out grown it-and there is not a chance that we can afford a replacement)

That is appalling!! Can we set up an MN letters campaign all emailing/posting to your MP?

This doesn't surprise me.

We needed a buggy for DD2 as she was growing out of her regular one. This was just after I had DD3. I was told they wouldn't supply a double as they only funded for DD2, so I got a Major for DD2 (which is fine) but then couldn't take my girls out anywhere on my own.

I ended up shelling out my own money to buy a regular double suitable for both girls. I have the Major for when I have DD2 alone (not very often).

sorry its taken me so long to respond. i have had one mad day!

dd ( who is 2)has no physical disabilities she "just" has respiratory problems manily when asleep but sometimes when awake. so i need something big enough to carry her oxygen and monitor around otherwise i will be carrying it on my back.

ds does have real walking difficulties. so the buggy is for him.

i cannt get o2 on a macalren major also i need 2 hands to push one which i don't always have!

thats why i wanted a jazz easy s as it ticks all the boxes.

i asked my paed for the referral 8 weeks ago. eventualy he wrote it and the day that the OT got thye referral she called and we had an appt the next day. ( i was surprised!) i was also told that their computer systems are going to be shut down and there would be no more appts for at least 3 months so we were really lucky.

they havent said no (yet) but i just wanted to know what happens if they do. they are not happy about providing something that caters for my daughters needs when the referral was for my son. i cant get a referral for dd as she has no mobility issues.

complicated!! i think i have confused myself.

and yes i might write to the mp if they say no! ( or else fork out the nearly 2 grand)

The Carers (Equal Opportunities) Act 2004 makes it a legal responsibility for Health Authorities to take into account the carers needs when assessing and providing services.

Also point out that carrying O2 on your back is a manual handling risk.

It would be reasonable for them to do an assessment for DD aswell because from a professional point of view it would be difficult to provide something for someone they haven't seen even though it equipment is actually for your son.

You have the right to complain about the service you receive from the NHS.

If at the meeting they say you can't have what you want, ask them to explain in writing to you exactly why not.

If you are unhappy with the outcome of the meeting then ask them about the complaints procedure. They should have a formal complaints procedure.

thanks poobah
we find out tomorrow so i will let you know.

i did take the o2 in with me when we went for the assesment so they have seen it.
both children have the same paed. so thats useful.