URgent need of OT equipment advice needed

[sleepysox]

DS is in need of a supportive chair.
The social services OT lady said she'd let us have one, but we had to get 3 quotes first and then they'd decide which one for us to go for.

DS is due to have a major op on his skull in the 1st week of Dec. I explained that we must have a chair before then as we have nowhere to put him, and when we're not holding him, we have to lay him on the floor. After the op we won't be able to lay him down. I gave them from the second week of august to sort it all out.

After we'd had the 3 appointments with the OT and the reps for the 3 quotes, they kept us waiting for a while and then said that there was another child who had almost outgrown her chair, and that once it was cleaned up/ serviced we could have that.

We were told that yesterday and now there isn't enough time for us to get a supportive chair before the op. DH hurt his back yesterday from lifting DS, and I have tendonitus due to lugging around DS all the time. He has low tone and so feels very heavy.

When I explained that we had nowhere to put DS, we were told to use our SN buggy! THis is used every day and is muddy due to our long muddy walks (we live near the woods).

Am I being unreasonable to expect to have a chair to put DS in? Should I kick up a stink to try to get a chair before the op, or should I be grateful I have a buggy?

If you think I need to kick up a stink, who do I contact? My OT's boss? Or the person who deals with budgets?

I'm riled up and ready for action now, but have to leave for work at 4pm. My Ot is in a meeting until 4.30, so can't speak to her now.

What would you do?

Well in your shoes I would now make the most enormous fuss. I would go to the OT boss at first. Then do you have some sort of case manager person? Care manager? I would be straight on at her at the same time; ditto the outreach people at the hospital; any other of social services etc. I would be telling the hospital that until the equipment was in place at home, DS would have to stay in hospital (very expensive, they won't want that). I would also contact the hospital OT people to see if they can lend you a chair short term. Also I might contact the red cross as a back up as they do lend equipment in an emergency which this certainly qualifies as. I have been in situations like you before and have found the charity which supports my daughter's condition also helpful; is there anything similar for your son's situation in which case they might have OT types who could also help. I think you have been very badly fobbed off. Can't believe you had to find your own quotes too, is that normal? Not here - the OT does it all. Oh think I would copy the lot to the GP and also the paediatrician too. Then (I am revving up now) I would call an emergency meeting with social services uncle tom cobbley and all and say unless the situation was resolved immediately you will have to take the matter over their heads. I might also copy your MP and the PM with a photo of your DS on the floor with the muddy buggy next to him. GRR.

ring them and tell them if you don't have a chair and either your son or you a(or your dh) are hurt cos of this you will sue, ask fo the name of the person so that they can be named in the suit......
normally works for me

oh another idea, is your son at a school? If so they just might have a spare chair of some sort they could lend you (or contact a school if he is not of school age yet). Or put a plea in your local newspaper, you might find a wealthy person who bought their own chair who has finished with it and would pass it on to you. Or is there a softplay place nearby who could lend you some softplay stuff? or is there a physiotherapy dept at the hospital or child development centre who might have something? (Notwithstanding still making a massive fuss with the original OT person). I would keep away from the budget person, this is not your problem .

The other thing is to speak to the hospital OT, chances are they won't discharge him from hospital until they know he has adequate, seating, bathing & sleeping equipment.
If they know there is the risk of him tkaing a bed up longer than needed due to OT equipment issues they may be proactive now & kick arse for you.
Do you have a SN social worker?

That is truly rubbish. I wish it was a shock to hear a dc could be treated like that. Hope making a huge fuss works.

I agree with previous posters, especially if you refuse for him to be discharged, stating it would not be a safe discharge, without it you may find they magically get their finger out, good luck

Right. I'm ready for a fight!

Thanks all.

I'll try and find the name of the OT's boss tomorrow and go from there.
I'll also contact the hospital where DS is due to have his op and see if they can put any pressure on. If that fails, then I've found the name of my MP and I'll give him a call.

To be fair to the OT- I organised 2 reps because it had taken us so long to get referred to the OT- we had been continually referred to the wrong OT in the wrong dept, so I decided to get the ball rolling, to make sure we weren't left in the lurch for DS's op.

I think they changed their tune about buying us a chair due to a lack of funds. If I complain, I hope that they can magically come up with the money.

I've a feeling it's now too late to be able to get a new chair, as the turn around time is about 6 weeks, so I'll definitely contact the Red Cross. I didn't know they had equipment to hire.

DS is only 14 months, so not in school yet. The lack of supportive chair is really setting his development back, as if his hips and trunk were artifically supported, his brain could stop having to think about his hips and try to do other things- well that's what the physio said, so I'm cross about the situation in that regard too.

I'm worried that I will have to deal with these people for the next 18 years and so don't want to piss them off in my first dealings with them.

Thanks for all your help and ideas. I'm now armed and ready for action!

OK I'll cut the army metaphor now and will be on my guard to fight them tomorrow.

Thanks ladies. You are all amazing. You always know the right thing to do. I feel like I'm learning the ropes from real pros and one day I hope I'll have enough knowledge to be able to pass it on to other newbies to return the favour.