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Here are some suggested organisations that offer expert advice on special needs.

Original poster

Wheelchair services don't feel like fighting again

30 replies

meea · 12/10/2004 11:34

Ds2 is 2 and has problems with his muscle tone and balance.We spoke to ot about his buggy being on the verge of breaking as he is a big heavy boy.She suggested a major buggy would be ideal for him and would look into funding for him.We got a message on the answer phone last week saying that they didn't feel they could justify funding one for him. I have spoken to her this morning and she said that as he is such an able little boy and because his problems are only subtle there are lots of other children who need one more than him.I really don't feel like fighting this one but I don't have £200 to buy it myself.I have asked his hv but she knows nothing about refering to wheelchair services.
Does any one know if you can buy second hand ones from wheelchair services.

OP posts:
snmum · 12/10/2004 11:38

have you looked on ebay?

what is your sons diagnosis, how can they justify not giving him one?

lou33 · 12/10/2004 11:42

Go to your gp and get them to refer back to wheelchair services. Bloody hv SHOULD know about them, or if not then take time to find out.

Original poster
meea · 12/10/2004 11:42

We still don't have a dx she didn't really try to justify their decision.I am not feeling strong enough for another fight at the moment Have been looking on ebay but they have all looked in bad condition.

OP posts:
pixel · 12/10/2004 12:16

I should try your HV again. My HV referred my son for his major buggy and he got it with no problem at all. Surely she could contact wheelchair services for you just to lend weight to the fact that he does need it?

marmet0 · 14/10/2004 10:46

hi i have left this message on another message board but just want say about how wheelchair sevices treated us saying about my daughters maclaren major.What they told me is: there 2 types of maclaren major buggies one for younger children and 1 for older children to small adults eg : the 1 for younger children has a 5 point harness on them where as the 1 for older children to small adults just as a lap belt, if not severley disabled and thats the 1 they gave me, coz the last major had a broken wheel. It had blue and white stripes going down the seat which the colour wasnt an issue really but latter found out this was ONE OF THE FIRST majors was produced back in 1994 and the girl had told me it was only about 1 to 2 years old, and they only do 1 maclaren major and the maclaren major with the 5 pint harnness is the newer model hence when they first done the majors they was all just a lap strap that went across like the very first maclaren childs buggy so why tell me different or lie i cant put it down to anything else.Should they be still be useing sn buggys that are this old.Yes it works fine and looks if it has had not much wear and tear they are strong old things arent they ?. hence people say there 1 of the best special needs pushchairs on the market, and i know if i take it back they will turn around and say " well it works ok" and will make me feel grate full that i have 1 at all, but its telling me wrong thing about it in the first place that so annoying sorry to go on just is there any 1 else had an experience like this at all

lou33 · 14/10/2004 14:37

We used an old style major buggy for ds2 who is 3.3, until he got his wheelchair in the summer, because it suited him better. He needed extra seating inserts , which didn't fit in the new one. Didn't bother me how old it was, what concerns me more is if it does the right job.

Dingle · 14/10/2004 14:48

meea-if you need to put up a fight for what your ds need- then do it!
my dd is almost 3 and we have been referred to the Wheelchair clinic and are on their waiting list for dd to be assessed. I don't know if this is how it works jusy locally or in general.
From what I remember I was referred by the Learning Disability team, but I am sure any "proffessional" envolved could be it for you!
Good luck!

Original poster
meea · 14/10/2004 17:27

If only I had the fight left in me I am so tired this week .My hv left a message to say that she has been adviced that there is nothing they can do.He would have to be refered by the cdc .The ot who has seen ds2 for a total of 20 minutes over 2 visits to playgroup and his physio dont feel that ds2 problems are enough to justify funding.Funny thing is she only assesed him sitting as she came to watch him eating.
Guess I will just have to find one second hand as I cant afford a new one at the moment.Don't supose any ones got one they want to sell.

OP posts:
kalex · 14/10/2004 17:28

IF your HV wont fight for you, make an appointment with your GP, and get him on your side. Tell him how tired and fedup you are with this.

Original poster
meea · 14/10/2004 17:29

If I get an older one with just a lap belt can you attach another harness as I would'nt be happy with him being secured by a lap belt he is only 2.

OP posts:
lou33 · 14/10/2004 18:12

yes you can get them from a company called crelling harnesses. They do a five point one that attaches to the major strap.

Original poster
meea · 15/10/2004 13:28

Well wish me luck I'm off to the GP this afternoon to make my presence felt.

OP posts:
lou33 · 15/10/2004 14:59

Good luck!

jakbrown · 15/10/2004 15:02

meea, blimey! . How very supportive of them. Is your hv a special needs one? There is a charity that give one-off cheques to buy specific equipment for disabled children. Will call my HV now and find out the name of it. We got £200 towards a special carseat for dd. Good luck!

jakbrown · 15/10/2004 15:17

Meea, have just spoken to my hv and she says the body is called the Patients Support Trust. She's putting a form in the post today and you need to get your GP to sign it and then just outline how much you need and what it's for! So CAT me with your address and I will forward ASAP if you don't get anywhere today

Original poster
meea · 15/10/2004 15:46

Have just got back was told that prehaps now is the time to make him walk if i'm worried about safety buy a wrist strap.Or try speaking to cdc again and explain my problems to them like I havn't already.Excuse me while I scream cry and generally loose it.Jakbrown will send you my address thanks for thinking about me. Hv is'nt a special needs one and is completly useless.

OP posts:
kalex · 15/10/2004 15:48

that is Bl""dy appaling. GOD a child with no problems would find it hard to cope without a buggy at all.

I didn't walk until I was 22 months, I certainly couldn't haved coped without a buggy.

I am OUTRAGED that your GP has been so unsuportive.

lou33 · 15/10/2004 15:50

Omg I am speechless! The gp actually said that?!

Ok well apart from a suggestion to change gp's, I would also get onto the cdc and demand an emergency appointment, and lay it out for them no holds barred. Cry if you feel like it, say exactly how hard things are and how you cannot cope without a buggy. Otherwise is ds in receipt of dla? Would you qualify for help from the family fund, to buy one for you?

My initial and unhelpful reaction would be to say to the gp , ok i tell you what, YOU take him for a few days and then see how you cope.

I am incensed at their lack of consideration.

jakbrown · 15/10/2004 15:53

Speechless
Will get forms over ASAP- do you think your incredibly unsupportive GP would sign them?

Dingle · 15/10/2004 17:00

Speechless!! Meea- I am absolutely disgusted, I can only offer my sympathy and support in which ever way I can.
I have the forms for Family Fund but never bothered completing them but isn't there a condition that they will not provide money for something that "SHOULD" be provided by another authority?
DD (nearly 3)is not exactly small for her age, she is above average in height/weight "normal" growth charts & off the DS height chart completely. Yet she only has the average motor skills ofn 15/24 months. She broke her buggy back in May and we managed to buy one off of a friend of ours that was a bit bigger than the average buggy(Chicco)while we waited & waited for a referral to the wheelchair clinic.
Yes in theory I should probably let her walk more often but in practice it just doesn't happen & to think that someone would suggest using a wrist strap on her, I think I would quite happily have got one & tried to strangle them with it! Have these people actually tried to walk with a child swinging uncontrollably on a strap, obviously not as they would realise that it doesn't solve many problems at all.
Sorry I am off on tangent ranting about anything & everything!!

Original poster
meea · 15/10/2004 17:14

We can't use the family fund as we don't get dla tried to get hv to help me fill those in but guess what she had absolutly no idea.The best thing is that ds2 's gp is a mother of 3 but I guess she has never had to walk 4 kids to school when it's raining.I don't know why I expected anything else.We looked into changing back to our old doctors who were wonderful but we are to far away.

OP posts:
jakbrown · 15/10/2004 17:50

I could always 'lose' mine and get another one .
But that would be fraud.
Meea, why don't you get DLA? Even the lower level would help and then maybe you wouldn't have to jump over so many hurdles to get stuff your DS2 needs?
ps Tried the wrist strap with DD- utterly hilarious. Short of dragging her along the floor, let's just say it didn't work in any capacity.

Original poster
meea · 15/10/2004 17:59

Just didn't know where to start with the forms.
Consultant thought that we might get it because of ds2 sleep being so bad.But I guess with him doing so well I just don't know any more what is different about him.Did that make any sense.

OP posts:
jakbrown · 15/10/2004 18:07

Absolutely.
Well if he has problems with muscle tone and balance and needs more help than a typically developing 2-year-old then I'm no expert but I think you would get lower rate for personal care. How bad is his sleep? I get higher rate for my dd because her sleep is, erm, 'challenging'! The difference between middle and higher rate is difficulty at nightime. Lots of mums here can help you with the forms. You have to think of the WORST day the WORST night etc you've had with him and how that differs from a child with no problems. Very hard but your ds2 deserves the money! The only pain about the form is you need a professional to verify it. What does everybody else think?

misdee · 15/10/2004 18:09

mmea, sorry i have missed what is wrong with your ds?

My dd2 wlaks a bit funny (people say she is drunk) balence is off, , vomits and doesnt sleep much. Add to that eczema and we get high rate care DLA for her. she is just 2.

Sounds like your HV needs a bit of training with delaing with SN, with regards to DLA forms, fill in everything you can yourself, and then ask her to come round to do a home visit, go through the forms with you and make sure her ststament at the end matches what you have said in the forms. One hv even put for my dd1, that i couldnt leave her with anyone else as she had too many creams, medds to administer that we wouldnt feel comfortable leaving her.

If you get desperate, you could try ebay for a major buggy. they sometimes appear on there, but dont know what they go for.