Is the UK health system as much of a fcuking joke as the swedish one?

[catski]

Warning - 100% unmitigated rant contained herein. And much profanity.

As some of you know, my son was diagnosed with mild autism almost two months ago. I first raised my concerns with the local paed back in September and managed to get a 'fast' diagnosis (5 months) because a MNer mentioned a very knowledgeable man called Christopher Gillberg who happens to sometimes work in Gothenburg (where we live), so I found out where he worked and asked to be referred there. He works part time for an autism research unit at gothenburg university, and although we weren't able to see him, we saw his 'team' who were interested in seeing my son because they don't normally see children that young (19/20 months at the time) and wanted him to take part in a research project they're doing about the effect that early intervention has on children with ASDs.

As the unit who diagnosed him are a university research unit, they are not involved with post-diagnosis therapy. This is the responsibility of our local 'habilitering' service.

Since that diagnosis (mid Feb) we have met with habilitering three times. The first time was for them to tell us who they are and what they do. The next two times were for us to watch a couple of videos about autism and for them to gather information about how my son's condition manifests itself and how it affects our daily life. The last meeting with them took place this morning and I asked them what their plan of action is for my son, to which they replied that they need a psychologist, speech therapist and pedagogue to have an observed play session with him first, and only THEN can they START to form a plan of fricking action. The first opportunity for these three people to get together to see my son is the 11th May - almost THREE FRICKING MONTHS since my son was given a diagnosis, and only then can they START the process of making a plan for him. Why in the name of arse, if they personally need to assess my son in order to form a plan for his intervention, was this meeting not organised as soon as they received notice of his diganosis two months ago? The three meetings in between have had absolutely nothing to do with intevention or therapies and there is absolutely no reason why they could have been organised concurrently.

It's just sheer fcking incompetence - someone not thinking 5 minutes ahead to see what they need to do to start therapy. I am at a complete loss. Added to which there is no bloody private sector to which we can turn when the system is overloaded/not coping/incompetent. Habilitering is our only choice, so if that lets you down then it's tough fcking luck.

I really don't know what to do. I am shell shocked by their lack of thinking and inactivity. Why has it taken them two months to decide that they need to see my son in order to form a program?? Once this assessment session is over God knows how long it will take for them to form a plan and then actually put it into action. I have to bear in mind also that this will be getting into the summer season and habilitering effectively shuts down for three months, so I think we are probably looking at autumn before my son gets any actual help from them. The biggest joke of all is that they actually state in their own literature about how important early intervention is because of the plasticity of young children's brains, and how intervention should be started as soon as a condition is suspected, without waiting for a diagnosis. Of course they don't come round knocking on your door to tell you that so putting that info in their literature is a bit like locking the stable door after the horse has bolted.

I am seriously now thinking of moving back to the UK although I don't know how we will do it realistically. My husband (swedish) has a job which is very much based in gothenburg, and I effectively committed career suicide when I moved to sweden to be with him 4 years ago. The logistics aren't in our favour - maybe he would have to live here and come and see us at weekends, I don't know.

How long does intervention normally take to put into place at home once you have a diagnosis? Do you think I'd need to get him rediagnosed or would they accept his swedish diagnosis? Are there any particular areas in the UK which are better than others for this purpose?

I'm really sorry to rant and ramble on. I'm just really at rock fcking bottom at the moment and I have no one to turn to.

We didn't really start any 'intervention' til DS1 was 3.6 but I agree as soon as the dx is made, some therapy should start both to help the child and to keep the parent sane. I hope this isn't an intrusive question but I'm interested in what they mean by 'mild autism'. Do you have a written report explaining what the key difficulties are ? The State Sector here is limited in what it can offer but there is a more active private sector but it can still be pot luck getting someone good to work with your child. It does sound as if possibly they see him more as a research subject ?

well my ds was observed for a yr from 2-3 and dx at 3 didnt receive salt until 3 half and thats all we have

we go to special needs group where i put him in music therapy but that is all the help we have and no more was offered

now ds is nearing school more help arrived a pre school to prepare him and 1-1 was given but thats nearly a whole yr with no support

if im honest it sounds better where you are to what help we have received my ds was dx and that was it for 6 mths most of my support came from on here and sn group

from what ive learnt i dont think it matters where you are nothing comes without having to fight for it first and im afraid keep fighting nothing has got easier ive battled for everything so far nothing has just landed in our laps at all

sorry you are experiencing frustration and delay. the NHS UK system is likely to be worse than you are experiencing I'm afraid - my area is not good; it took 8 months for DS to see NHS SALT, and 13 months for him to have a joint assessment with paed/SALT/ed psych. then after that about 6-8 weeks for him to see a more experienced SALT. In the UK there seems IME to be a trend for SALT to assess and send you away with exercises rather than to do regular hands on sessoins. But as cyber says, there is a private sector here for SALT and other therapies (though of course it's not always straightforward finding someone with the right skills to help).

In many areas the UK system will be worse. Locally an early intervention programme (up to 15 hours per week 1:1) has started but it's pretty rare.

Just adding to the chorus: it's a bit of a postcode lottery. Here in London my DS got referred early November, first assessment by SALT in March (no dx, one page of paper telling us to keep our sentences short), MDA end of April. Still on waiting list for SALT; starting a Hanen course next week or perhaps in September (depending on how heavily subscribed it is). If I had a better idea of what the problem is (receptive language delay and/or ASD and/or ADHD and/or whoknowswhat) I'd have gone the private SALT route already. It doesn't sound much better than where you are, tbh. Sorry not to be much help, you must be very frustrated (I know I am), but you are intervening early and doing the best you can.

sc13 - go the private SALT route anyway - you don't need to wait for a DX - if you pick one who has good experience of children with ASD then they should be good with working with receptive language and attention problems too.

TotalChaos, you know what? That's the best advice I've had all month. I'll get a list from that website and then talk DH into it tonight.

you're not anywhere near Chester are you? if you are I could give you a recommendation...

No, sorry - central-West London. Actually, I'm not sure where Chester is - maybe it's actually very close to London? You can tell I'm not from around here . I've printed out a shortlist from the website, the cross-search for 'ASD' and 'bilingualism' has turned out one lucky SALT within 8 miles (plus a lot of ASD-specialized others). Thanks a lot anyway, you're a doll

you're welcome. sorry for the interruption to your thread catski.

Sorry to hear you are having a rough time.

I have little experience of autism myself, but I know it took far longer for my friends here in the UK to access help.

My own dd who is physically disabled was told that it would be at least a 10 month waiting list to get seen by the orthopaedic unit, even though she was unable to walk because of the pain. In the event, we got in quicker than that, mainly because I kept badgering.

Am waiting for a referral for my ds now, who is also in pain and has walking difficulties; I'd be surprised if it takes as little as 3 months.

I agree, it is a joke. But probably very similar in this country.

After 5 years at this game, I have learnt never to sit around waiting for an appointment, it will get lost (as my friend's oncology appointment did, with potentially fatal results), always chase it up, be prepared to sob on the phone to the doctor's secretary.

Thanks guys. I had a sinking feeling it might not be that much better in the UK, although I guess it depends on where you live. A shitty system in the UK doesn't excuse a shitty system in sweden though, and at least you have a private market there to some extent if you want to use your initiative more.

Cyber - not an intrusive question at all. His diagnosis is "autism syndrome". I have no idea how that translates to the UK - although they told me he was at the mild end. I remember in the diagnosis meeting the psychiatrist said he met the cut off for ASD, but not autism, but the pedagog said he met the cut off for ASD AND autism. Whatever that means. I asked for an explanation but they just said it was mild.

Total Chaos - interrupt away!

I guess that accessing a private SALT wouldn't work in a long distance sort of way. Does anyone know if there are any privately run Hanen training courses in the UK? I've emailed the Hanen website but it will be a few days before they get back to me.

I feel like I've really lost the will to live today. Sorry girls. I'm sorry that I'm moaning on about this, and I'm sorry that our kids are not getting the help they should be within reasonable time frames. It sucks. It all really sucks. What bugs me even more is that if you ask the average swede on the street they would most likely extol the virtues of sweden and how marvellous their model is. If you ever meet one and they start banging on about how it's paradise on earth here you can tell them from me to quite simply.....well, I'm sure you can fill in the blank, I think I've done enough swearing today.

I wish you all luck in your own endeavours to access help and more than anything that your children grow, develop and are happy.

Are you sure you can't go down the private route in Sweden? Have no idea what it's like with SALTs, or for that matter what it's like, but have a feeling that even during the most welfarey era when I was living there, private doctors did exist and doctors did do private clinics.

SOmeone like Growing Minds would work with you and they are completely brilliant. Here's my slightly old review,but they're very good and I know others on here have used them more recently and found them brilliant.

I also came across (but have never used) distance SALT

Cory - yes, I'm quite sure there are no private options in this situations. There are a number of private doctors surgery, it's true (in fact I had myself tested for chicken pox there before trying to become pregnant as wasn't sure if i've ever had it and the public system would only act if you became exposed to the virus whilst pregnant). Sadly none of them deals with children with ASDs. Likewise there are no private SALTs - they all work in the public system. There is also nowhere to find a 'nanny' (looking for someone with experience (preferably with kids iwth ASDs) to help out with Floortime with me).

Thanks for the links mrst - your website is fantastic. I've emailed GM for a 'free consulation', but I thought I read on one of the previous threads that GM would only really be suitable for children who are very hard to reach - or am I thinking of Son Rise? My son is not hard to reach, and (at the moment) doesn't have any behavioural problems that intefer with day to day life, although he's only just going to be two so I realise there's plenty of time for that to change.

I've calmed down today - not frothing at the mouth quite as much as yesterday, but i'm still shell shocked by their inability to schedule this meeting as soon as they got his diagnosis or shortly thereafter.

GM- work with kids across the spectrum and use all sorts of approaches. We used VB with them, I know someone else who used VB and now Floortime. They have an 'anything that works' approach which they fit to the child, rather than have the child fit the therapy (I sound like and ad, but that is quite rare ime).

When I did their parent training course there was someone there with a child just 2- a great age to start getting going.

I'm training a graduate student in FLoortime..... The nice thing about FLoortime is that it's quite easy to do (compared to something like VB) so enthusiasm is more important than experience iyswim.