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Private diagnosis, so being 'removed' from NHS pathway

(14 Posts)
seekingsummer Tue 31-Oct-17 14:19:47

Hi everyone,

This is my first post, so hope I do it all right. Sorry this is long!

My DS is 4 and has a private diagnosis of autism. We went down the private route as my LA is notorious for having an appallingly long wait time for an NHS diagnosis and we wanted to know where we were at before my DS went to school.

We started the NHS pathway over a year ago and since then we have had a single triage type appointment with a consultant paediatrician, nothing else, no speech, no OT. I have chased and complained and this week was told that as we have a private diagnosis (they know this from our EHCP Request) we cannot continue with the NHS diagnosis pathway and we will be removed as we are 'taking up space that someone else could use'. Leaving aside the issue that this is not (or shouldn't be) a means tested system, they are also saying that they will not confirm that the private diagnosis we have will be accepted as the equivalent of an NHS one. They say there is no need to do this as we'll have access to provision.

We continued on the NHS pathway as we know that many LAs will not accept a private diagnosis and at the time believed that included or own. We have zero faith that our current LA will not try and pull something later. They are already seeking to move towards diagnosis being carried out by schools and gps only, reflecting a move by lots of SW London boroughs. We cannot see why they won't accept and confirm that the private diagnosis will be accepted by them. They just say that we will have access to provision (although all they cite is the early bird course). I'm nervous about removing my son from a pathway on the whim of a paediatrician who seems annoyed that we have a private diagnosis. Also, what if we ever need to move? But I'm wondering if there is any benefit in having the NHS diagnosis as well. Our thinking is that it gives us certainty, especially if we do ever have to move. Our son has a life-long disability and I am very wary about doing anything that will prevent him from accessing any help he may be entitled to. I have zero faith that this is not just a cynical exercise in reducing waiting lists with a nasty shock waiting for us somewhere down the line.

Sorry for the ramble. I just wondered if anyone else had experienced this and if I'm overreacting or right to be cautious about stopping the NHS pathway without any real assurances as to our private diagnosis. Also if, as we currently intend to do, we fight them on this, what we can show may be the detriment in not having the NHS diagnosis.

If you still are, thank you for listening!

zzzzz Wed 01-Nov-17 20:08:44

Diagnosis is diagnosis, so longer as the person doing it is qualified to do so. It really doesn’t matter who paid for it. Ask what they provide for children with XXX in your area.
Ask yourself what you think he needs?
Be aware that there is really very little on offer.

seekingsummer Wed 01-Nov-17 21:56:54

Thanks for your message. Yes, we know that the available help is extremely limited, that was the cause of our concern really, whether we were being forced down a route that meant even that would not be available to us. We're working really hard with him ourselves and he's making progress so we have a good idea of the kind of help he'll need (whether that materialises is another thing!). I think that'll be the real key to how he gets on (us). Thanks again.

Allthewaves Wed 01-Nov-17 23:37:22

By the sounds of it they are going to remove him and not give you a choice. We got our nhs diagnosis and nothing since.

If your worried about speech in our health trust you can do a self referral to salt and have him assessed. Iv referred my 6 yr with asd again as he has now started to stammer. They reassessed and agree he needs a couple of sessions then monitoring.

Our statement process this year just had asd diagnosis included but main emphasis was out in teachers report and ed psych report.

Allthewaves Wed 01-Nov-17 23:38:11

Also if you want OT we had to go back through our gp

seekingsummer Thu 02-Nov-17 00:15:29

Thank you for replying.

Yes, it does seem that way (that we'll be pushed off the list). You can self refer to speech here too and we did that but it has been non existent. The SALT assigned to my son's nursery left (as he's in nursery all speech is done via nursery). The LA told us they couldn't recruit and have an embargo on hiring agency staff. You couldn't make it up. My DS has disordered speech but is good at picking up language modelled to him so we work very hard at that ourselves and it has made a massive difference. I guess from all this it seems like diagnosis is the least of our worries, as provision is terrible. We're just scared that what little there is may be inaccessible to him. It just reinforces that we have to expect little and do as much as we can ourselves.

zzzzz Thu 02-Nov-17 07:27:56

You don’t have to get SALT through the LA though do you? It’s health not education. Call gps surgery and ask the receptionist for the number for SALT and self refer.

I really don’t see what the advantage is of going through assessment if you already have dx. There are far better things you could be doing with dcs time. The assessment process is NOT the gatekeeper of support.

seekingsummer Thu 02-Nov-17 11:41:05

We did self refer. Via the GP. In our borough if your child is in a preschool that is where speech and language is provided. That's why we have had none; my DS's pre school is currently classed as 'uncovered' as they are without a SALT until they recruit. We have been taking him to a S&L playgroup but funding for that has now been pulled. We have worked with him every day ourselves and that has taken him from being unable to answer or ask any questions to having much improved back and forth.

We realise that diagnosis is not the gatekeeper to support but we are also very aware that LAs are doing all they can to keep kids off their lists.

Thank you all for your help.

zzzzz Thu 02-Nov-17 11:47:31

Can you not just ask to go on the list for the children who aren’t in preschool?

My experience is less that LA try to bump people off their therapy/support lists and more that there is little if anything available and what is is often useless.
Ds is now 12 so we are passed that stage now.

seekingsummer Thu 02-Nov-17 12:08:47

I did try that. It's totally prescriptive and they won't move you onto the non pre-school list. Sorry, I didn't man my last message to sound snappy, I just meant that we certainly aren't sitting on our hands waiting for help to materialise following an NHS diagnosis. We're working so hard because we know this is it really, help wise. It sounds like there's no difference either way, we just couldn't understand why they won't just say yep, the private diagnosis is fine/equivalent and accepted. They won't do that and they have messed around so many people we know that it's hard not to be suspicious.

Thanks again for your time. I always find your posts about language and apps really helpful and have used quite a few with my little one.

zzzzz Thu 02-Nov-17 13:08:25

It’s hard sometimes to know what to say, having been there and experience the level of anxiety and frustration and the Colossal weight of trying so hard and working so hard. In hindsight I would say understanding behaviour and helping create a happy rich home is infinitely more important than anything the nhs or school can or will provide. I think they wasted my time and creates stress and sadness that should not have overshadowed my sons early life. NOTHING they did helped him. What helps is a supportive family, extended family and friends, a school that wants what’s best for your child not just what they have to provide, and acceptance, not defeated acceptance proud, recognition of who he is now, and who he can become.

My child is language disordered. He’s 12 and language disordered which means he can use his other skills to prop up his language now. He’s here, he’s handsome, and funny, kind and loving. He makes our family amazing just as his siblings do. I’m not really an benign beaming “special” mum, but we ARE happy, things are fine, and this is the life we have to lead so I can’t live it feeling ds is broken and needs fixing.

Which is a waffley way of saying, expect the dx he has to be fine if the person who gave it was qualified, don’t waste too much time chasing salt who might not be offering much anyway and expect your ds to grow up, develop and become exactly who he was supposed to be.

seekingsummer Thu 02-Nov-17 13:23:15

Thank you so much for your message. It's wonderful to hear about your DS. He sounds absolutely lovely.

DS is the absolute joy of our lives and we are truly richer for having him. I knew I'd love him but I hadn't realised just how much I'd like him! He's so much fun (a proper handful, but fun with it). His younger brother died last year so he is all the more precious to us and likely to be our only child now. It probably means that I do waste time stressing about things I have no control over, like this. I'm trying to read the future I think, and have that constant feeling of having to do things now to make life easier for him later. What you said about having a colossal weight of needing to do things really resonates. We will focus on enjoying him, as we do now. Thank you flowers

zzzzz Thu 02-Nov-17 21:08:06

I’m so sorry to hear about your younger son. How awful and hard that must be for you all. I hope peaceful happy times are coming for you all. You are so spot in about liking your children, I had no idea how huge it all was either.

seekingsummer Fri 03-Nov-17 00:26:12

Thank you x

Yes, we've been utterly broken by the loss of our son. So we're very lucky to have DS1 who brings some sunshine into our lives.

Thank you for listening! I really appreciate it.

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