In all seriousness, what am I meant to do to get the referral?

[elmosworld]

Hello,

I don't post on here all that often, but I am looking for a little advice from anyone...

6 months ago, after a very near hit experience on a road, I resigned myself to the fact that DS (Autism with sensory problems, an obsession with car badges and no sense of danger what so ever but the logical thinking capabilities to get out of any restraints!!!) was no where near ready to get out of a pushchair. I'd taken a lot of flack from people, especially older family members, about him still being in a buggy at just 4 and was told "well, if there is no chair, he will HAVE to walk" (usual problems is sitting and refusing to walk, getting scared of sirens, motorbikes and diesel engines) and "he's obviously not going to learn road safety if you don't give him a chance... that's all kids for you" - I knew they were talking from the perspective of having never gone through it, but as he was 4 and too big for the buggy we had and he'd walked perfectly for nursery every tuesday when they walk down to the woods, I started to think maybe it was me... So, when we were on holiday (foreign country) and the buggy dropped dead on us because of DS' size, we decided to give it a go without the buggy... we had reigns... and thought it might have been the start of something "good" IYSWIM

Well,I was wrong and had he have been hit by the car I am talking about (if OH hadn't have grabbed him within that exact second!) then he would be dead. He escaped the reigns, must have been quietly doing the buckles without us knowing when walking, and next minute, he was on the road with a truck coming one way and a car coming the other... and drivers abroad aren't like drivers here... we obviously noticed straight away because we were just walking back to the hotel, so OH was able to jump in front of the truck after him and grab him before the car came (which didn't slow or stop..)

It petrified the hell out of us, we went to the hotel reception, managed to have them book a taxi for a massive shopping mall, spent a fortune getting there (long way) and thank god, there was a Chicco store in there! We got a buggy, which actually was larger than any buggy I ever saw (still not big enough but...) in England, reasonably priced and admitted defeat when it comes to the walking issue.

Then, knowing things take a while, when at the next paed appointment, I asked for a referral to wheelchair services about a major buggy. She said she would refer us to physio/occupational and they had to send us to wheelchair services.

Well, the referral was rejected, twice, claiming funding has been cut and they cannot take on children with sensory processing disorder/ASD as "there's nothing they can do"

I called wheelchair services, explained the predicament but they said they can't help unless we have a referral from OT.

Paed has nothing to suggest either.

Now, I would save up the £30 a month for god knows how many months, to buy it ourselves, but truly, it's not just that issue we need help with from the OT and I can't believe they can turn him away without ever having meet him to decide that there's nothing they can do.

I know they are stretched, I don't blame them (I blame the cuts) but I am at my wits end. We can't get out properly with him anymore, he's too big to carry places, we pay out for speech therapy ourselves now because they cut that down (bearing in mind he can't talk at all but is trying his bloody hardest) to FOUR times a year, they cut the funding for the play session with other children of his age with ASD so he can't get there, we pay for music therapy, I don't drive and he can't just go to the nearest school so I pay out a fortune in taxis to get him to pre-school each morning... so "all" that DLA is being used up, plus a large chunk of our own income, and everytime I turn around, there is something else being cut! So it's just going to get worse...

I know there are people in more urgent need of OT and physio and wheelchair services too, so I don't want to come across like we are the worst off of everyone... but I am just so pissed off and need to rant!!!

I feel your pain, I had to buy my own. I know it's not ideal but try ebay, there always a few on there.
Only one major at the moment but there are other makes here

Don't know if any of this helps but we were in a similar situation when doctors refused to refer dd (unable to walk due to chronic joint pain) for a wheelchair- apparently "because it will make her think of herself as disabled" (so you don't think she might just notice when she is crawling up the pavement on her hands and knees ).

We were able to get a wheelchair on loan from the Red Cross without a referral. We also at one stage bought one for next to nothing from a charity shop- we found them a very useful source of advice and help.

In this area you can self refer to OT. I had an appointment yesterday and was hoping for a Mac Major but found out that due to cuts they are no longer providing them. OT was sorry but it was out of her hands - she said he can have a wheelchair though if we want it. (DS is 3 with ASD)

It's a bit crap and highly frustrating, isn't it?
When there's stuff out there that could help and is being denied is a scandal.

Have you thought about applying to the Family Fund? Cerebra? (all google-able).

I know what you mean about paying out. We paid for weekly SALT for 2 years (then got it in a statement when he started school) and now we are paying for sensory OT (NHS do not provide sensory OT for ASD kids in this county)

DLA is used up very quickly....

Thank you guys for your replies, I actually have called 25 charity shops in my town and the two towns nearby just to ask and also left my number in case I get lucky and one comes in.

I went into the mobility store a few miles away to ask if they would even just let me pay a bit each month, even if I waited til after I paid it off completely, but they wouldn't.

Thanks for that link though! keepingup... the bohemia one looks excellent condition so I will keep an eye and have a proper nosey at locations etc. I have looked at majors on ebay before, but they seem to be hundreds of miles away! Haha.

If nothing crops up I might have to look into a getting one from mothercare on credit, or loan or something... not what I want to do really, but we're off to Cornwall in May and need one by then as he is so much worse in unfamiliar places!

I know its a long shot but if there is a special school near you how about asking them if you could place a WANTED message on there notice board.

cwtch... yes, on directgov some areas do self referral, unfortunately not here. I know it's no use to you, but I am sorry to hear that... though not surprised if I am honest... might not be worth the effort afterall then ey.

I am just stunned at how much is being cut from disabled services, the NHS and mental health services... they weren't exactly well funded to begin with were they!

Spinkle... Thankfully, we got DS in a fantastic nursery and he'll be going to a fantastic school, we purposefully chose them because of their experience with the LEA and statements so we too have speech therapy listed in provisions that must be made for DS. One thing to be thankful for, there is no frequency mentioned though so I wont hold my breath just yet.

Yes, it is a scandal... they don't even know if they can help. I was told that they can help with all-sorts... apparently not if we are talking ASD.

Leonie, that sounds just like DS! He's funny in that a bike or siren can stop him dead and make him scream in fear, shake and refuse to move for up to 30 minutes after the event... BUT... if he spots a volkswagen/mercedes/chevrolet then he will run in the road to try and get a look at the badge... So hard isn't it!

Growlybear...

Haha... Erm... There is a special school nearby, I hadn't thought of that but they actually don't want to know us much anymore...

You see, we were going to send him there after hearing good things and we had a lot of contact with them, but after a few visits DS really didn't like it and they couldn't assure us of a few vital expectations we had.... so we looked at a school with primary resource provision unit... fell in love, love the head teacher (sooo fantastic!) took DS twice and... shock... he actually SAT down for longer than 2 minutes and participated in a lesson, engaged, with 8 other children! Haha. So the decision was easy, then when we told the special school that we weren't sending him there they called the LEA, starting hounding us, going out to nursery every day to try and "prove" he would be better at their school... So, we went in to see them, with the statement copy and pointed that the actual reasons we weren't sending him there are because they CAN'T accommodate his specific needs properly... and also told them that they were acting unprofessionally, etc etc. So, now they stopped outreach and informed us that should DS "fail in X school, there would not be a place for him at Y school anymore" hmmm... immature. I wouldn't mind, but we're quiet people, not threatening or abusive!!!

I could try the others that are nearby though, thanks for the idea!

Aww Leonie.. Hugs. It's so frustrating, I know! DS likes "balancing" too and in town centres etc he wont stay still!

Get him in a restaurant... he is perfectly behaved. Not like our child! Lol.

One minute we'll be on the car park and getting stares and comments on how naughty he is and "needs a smack" etc and we're running like headless chickens after him...

Next minute, we're eating food inside and getting "oh, he is such a good boy" haha.

Only when there is food involved! ;)

Sorry elmosworld if i hit a raw nerve.What horrid people.Hope you get something come up at other school.

No you didn't... Like I said, came on here to rant... you gave me another topic! Hah! Therapeutic. Yes, there are not very nice people, I am incredibly thankful that I learned that before putting him in there though! It's all ready now for September too, so he's got his place, got all the funding ready for 1-1 and extra support at a lovely school, with experience and an excellent reputation. So it all came good!

*they're

Not there!!!!

Ebay is definitely worth keeping an eye on. When we realised that, even though DS2 (then 3.5, now approaching 5) had outgrown his fairly roomy zooper and was trailing his feet on the ground, that he was far from ready to say goodbye to it, we watched ebay for a few weeks and ended up with a barely used major, complete with a lot of the accessories for less than what a brand new one would have cost us. We knew that we couldn't face a wait because he was hurting his feet (he's hypermobile) and I was hurting my back with the old buggy.

elmo - is it possible that there is a local (or even national) charity that will help you? DS has had funding from two - local round table and another local one that provides stuff for SN children. The round table was through physio (for astatic chair) and she just said the nhs couldn't fund it; the other was for equipment OT no longer provide. IIRC we weren't "means tested" for them - although that may depend on the charity.

It did sort of go against the grain - most of my life I've been involved in fund raising for various charities and being the recipient seemed odd but no way could we afford the stuff that DS has needed.

There must be a way to challenge this.
Who has refused the referral the GP? The OT Dept? Wheelchair Services?
Make a complaint to whichever immediately and ask if there is any right of review / appeal.
Contact your MP.
There used to be panels in PCTs which you could appeal to if a discretionary treatment was refused - your GP should know. I am not even sure this would be considered discretionary.
Do you get DLA mobility?
Or can your GP refer you to a different hospital which will take the referral.
What about going to the local newspaper and complaining that your disabled child is being denied a wheelchair its a good story and one the NHS are unlikely to want on the front page.
Finally you could contact a medical lawyer and ask if there is a legal route (children should get legal aid) to challenge the decision via judicial review, JR usually has to happen within 3 months but if you ring a good medical solicitor (look at Law Society website under Find A Solicitor and look for clinical negligence as a specialism - most of those will also do refusal to treat cases) you should get a free telephone interview and get some advice.

Elmos - is there a PALS service for the PCT that refused the referral. Although it wasn't OT, it was gastroenterology, we kept being refused a referral. I sent an e-mail stating the reasons why this was grossly unfair - including your point of how can they refuse when they haven't any knowledge of the case. I listed all the facts and also put in the social consequences of their non referral. I also mentioned that i was prepared to take this issue further in whatever media seemed to be the most appropriate.
PALS forwarded to the hospital CEO - miraculously i had an appt the next day. I also received an apology.
I think that you have to fight these days. I know that this is uncomfortable for many of us - but unfortunately we live in a society now that those that are quiet and show any signs of backing down will be ignored ahead of those who shout and complain - regardless of their actual need.

Hi elmos where abouts are you based? i have a mac major buggy that i no longer use as my son is now too big for it. A local charity bought it for me about 4 years ago and its still in good condition.
I am in berkshire, you are more than welcome to it, i dont want anything for it as like i say a charity purchased it for me and it would be nice if someone could make some use of it.

shelly :0)

Elmos I would continue to push for OT help even if you get a Mac Major yourself. I found the referral very helpful even though I didn't get a buggy as the OT is going to visit DS school and advise on sensory issues and draw up a programme for them to follow.

Hello again all,

Sorry, I haven't been able to get online over the weekend and a few "busy" (to put it nicely) days!

Thanks Welly, I got the PM and just messaged you back! :)

To everyone else...

I have looked and asked at local charities, there doesn't seem to be anyone who can fund this as it is technically an NHS/Wheelchair thing. I don't know of any national charities who can fund it, I only know that Family Fund don't.

It was refused by the physio/OT (they are the same board/dept here, not sure about everywhere else but they work together this way) and was refused twice. I have since learned that this is now a common thing to decline since all the cuts as there was a lady from Middlesex I was chatting to who has just been turned down as well for the referral.

Wheelchair services are adamant that I need to get a Physio or OT referral, not a private one either, and can't self refer... Grr.

We were told by DLA that they will be in touch near DS 5th birthday regarding the mobility element... which is another reason, actually, that we could do with being under an OT, to support this later in the year, otherwise it's us against them (and we know who will win that battle) at the time we put the DLA forms in, DS was only 3 and wasn't actually as bad as he is now - sensory, yes, but actual danger, nowhere near. So I wasn't shocked or suprised and hadn't really mentioned anything about the mobility side of things on the original claim as the care side was far more strenuous and time consuming. Now, it's probably equal!

I will try and get somewhere with it once more... as I said, it's not just the walking and the danger, there are other issues to do with safety and daily living that he really could use help with. SO, I will try going via the GP where I can really explain everything (our GP is fantastic, the paed is great too but everything is pretty standard, the GP is more personal so more likely to get somewhere.)

Thanks again for all the kind suggestions and support!

Hope everyone is having a good evening.