PCT and LEA keep passing the buck. Please help, I don't know what to do!!!

[Flowertots]

Please please please someone help us!!! This is a genuine request for help.

My dd is now 4.5 has been under the care of PCT since Oct 2007 with speech and language, Occupational Therapists and Physio. She has suspected Sensory Integration Dysfunction (sensory Processing Disorder). Speech and Language in our area is atrocious-staff shortages, people leaving, locums and now children therapists who seem barely out of nappies themselves. Most recently we went to attend an appointment (even though I'm suffering severe sickness due to pregnancy) and the therapist didn't bother turning up. The recetionist made up some cock and bul story about us not having an appointment and the therapist has not called us back even though we had been waiting for out block of therapy sessions since nov 08!!! Our OT is even worse. Has no sensory integration experience and has been bumbling along since the start without having a clue what she is doing. She most recently sent us a sensory diet which consisted of activities my dd is hypersensitive to and would either hate or be petrified of and is expecting her to conduct each activity for 20 minutes even though she has an average attention span of 3 minutes.

A private OT suggested we try and get our LEA to pay for private OT on the basis of the educational benefit but our LEA is not having any of it and has passed the buck back to the PCT who literally have not OT's working in the borough who have the relevant experince or qualifications.

I'm 3 months pregnant, have been signed off with hypermesis and throwing my guts up all day, whilst being kept up all night stressing about how to get the support we need for my dd. What other routes are there to get the help we need. We've now resorted to requesting help from charitiies but officially what can be done? I would love to sue. Has anyone been in a similar situation and advice what paths I should consider taking? One way or another we are in desperate need of the therapy but can't afford to pay ourselves. In the meantime my dd's development is getting more and more delayed.

Please help with any suggestions!

Poor you. First thing is, is she at school and Statemented? Cos if so, they have to provide the specified therapies, even if they have to pay privately. If not, that is the way to go - to get a Statement or to get the provision more tightly worded in the Statement, if she has one, to make sure that the therapist is experienced in the right things etc..

Givemesleep

No she is not statemented. She starts primary school in September and our Borough has said they are trying to get away from statements the more I interact with them, the more I wonder why!!!

Our health visitor said we would not be able to get one until she has started school, probably earliest is Oct 09 but others say we can push for one straight away. I will send a request first thing on Monday.

What else can be done?

Definitely apply for an assessment that may lead to a Statement. She's not too young. The IPSEA (google it) website has lots of advice on how to apply.

Your PCT sounds ribbish. You can tackle that by making a complaint to PALS (Patient Advisory Liason service?) for your area. Again if you google it you'll find the address of the one in your area.

Unfortunately you do have to keep at them all to force them to deliver - no matter how tiring that is.

Best wishes

I would also write to the head of the PCT citing Aiming High for disabled children and Valuing People Now and Putting People First and complaining about the poor service received.

Has a developmental paed been involved they could start the statementing process now I think.

I know its the last thing you need / want and I know its not right but my experience still shows that its only when you cause trouble that anything is done.

Definitely use IPSEA. They have a sample letter template you can use to initiate assessment for a statement. Send copies of all your reports/ paperwork on dd that you have with it. You have to make it v.clear how it all impacts on her educational and social progress and will do at school. It won't be in place until December even if things go to plan as it is a 6 month process, but best starting it now.

Good luck.

Use IPSEA, definitely. They're a bugger to get through to (pardon my French) as phone is staffed by volunteers - but worth persevering.

OK, the way I think it works is this.

You have no statutory entitlement to anything on NHS. NHS is controlled by targets and waiting lists; you can try sueing but that tends to be for life-threatening type negligence. Not failing to show for appointments. There are formal complaints procedures etc. and it sounds as if your care is so substandard that it might be worth pursuing this (with MP backup, maybe?) but you have no underlying right to good enough NHS care.

You have a legal entitlement to education for your child IF they are statemented. IF. This is why your LEA is "trying to get away from statementing" (an illegal statement for them to make in itself if I understand correctly) to save money. Because without statement, they don't have to provide a decent education. Some (and only some) therapy is considered educational, and as such can be written into part 3 of the statement. LEAs will fight against this tooth and nail and will mistrain their staff and teaching staff to believe this is not a legal requirement. It is, in specific circs. The IPSEA website has somewhere an explanation of what those circs are and imo it covers your case.

So, read the website, call IPSEA helpline, get a statement.

But ... but. All this will give you is entitlement for them to get therapy provided at school. This means the same bunch of muppets turn up in the school environment and fail to give any meaningful form of therapy, in an environment where you can't be there to check on the quality of what is delivered. All the "legal entitlement" part does is say if they don't show up the LEA has to pay a private person to come instead. And that would be repeatedly not showing up. And of course they tend to try to give group therapy or just train the TA/LSA instead of actually doing therapy with your child and that's hard to police too. Schools know this whole situation is a can of worms; they have no control whatsoever over the NHS staff so they wash their hands of it as far as poss - you'll get very little help there. So it may be worth biting the bullet and forking out for some private therapy alongside this at home to make it up to a decent overal provision.

The latest is that following an email I sent to LEA to ask for funding because PCT was not providing the services they should be, the PCT Manager has told her staff they are not to contact me. A senior Manager contacted me yesterday because they felt sorry for us and gave us the heads up because all our calls were being continually ignored and we kept missing therapy sessions because we couldn't find out if they were going ahead or not.
The thing is, this member of staff put their neck on the line to tell me what was going on so I can't reveal the info they've given me without landing her in it. It seems as if lots of the staff there are being forced to provide a conveyer belt service against their wishes. They've been told not to provide anything but the most basic service to any family so they can see more children.