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Being fobbed off by the NHS

32 replies

waitingforgodot · 10/01/2010 16:11

Story so far....
DS is 3 and currently being assessed for ASD. We have SALT, EP and others involved. I asked for a referral to OT as he has some sensory issues. To cut a long story short, they said OT will not deal with any children being assessed for ASD. I wrote 1st letter of complaint. Was told it was because the OTs are not sufficiently trained in Sensory stuff. Wrote a second letter asking, why if it is deemed a necessity in other regions was my DS missing out because of the postcode lottery.
Received reply yesterday and you will like this ladies. NHS told me to find a private OT. Also told me "there is no objective evidence of the benefit of sensory integration" and "The sensory integration approach is not recommended by the National Autistic Society"
WTF?????
Just thought I would rant!

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cyberseraphim · 10/01/2010 17:04

Given that autism is such a varied dx with such a varied outcome, it must be difficult to say anything is clearly indicated for autistic children. I have to admit I was skeptical about OT myself but have found it very useful and interesting -but probably not life changing. I don't think we are really aiming at 'sensory integration' (which can sound like a concept without objective evidence) just a way to strengthen upper body strength and to use deep pressure to sedate sensory seeking My NHS OT used the Winnie Dunn scale to assess his needs - Have you heard of that ? It's awful though when the NAS is cited just to back up their meanness - as if we all have to follow one line just because NAS say so.

waitingforgodot · 10/01/2010 17:21

Hi Cyber
I am wondering if the NAS really did say that? Have googled and cant find anything to that effect. I feel I am being fobbed off and as you know, you live in the next NHS area to me and were offered OT.

I have completed the Winnie Dunn questionnaires as we are going down the private OT route.

However, I am not going to be fobbed off and will investigate their claims. Surely they are not daft enough to write something which is untrue?

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bubble2bubble · 10/01/2010 17:55

WTF really

debs40 · 10/01/2010 18:24

I would put their quote to the NAS.

I attended a course before Christmas, run by the NAS and recommended by my OT!

The NAS site says:

Sensory integration therapy

Sensory integration therapy involves the gentle exposure to various sensory stimuli. The aim of this therapy is to strengthen, balance and develop the central nervous systems processing of sensory stimuli. Delacato (1974), who introduced the concept of Sensory Integration Therapy, focused the therapy on the five core sensory systems - vision, taste, smell, auditory and tactility. Today, occupational therapists continue to focus on these areas, as well as incorporating the vestibular and proprioception systems, when creating and planning a schedule of activities for an individual.

www.nas.org.uk/nas/jsp/polopoly.jsp?d=2427&a=3766

Not having staff trained to assess and advise is one thing, but suggesting the NAS does not support OT is something else.

There is no cure all, but I think OT strategies can be used to alleviate sensitivities.

On a practical level, if there is nothing going in your area you could ask your GP to refer you out of area. You could also try BIBIC

waitingforgodot · 10/01/2010 18:33

I have asked to access OT services in next NHS region but they told me that I have to be resident in that area to access these services.
Thanks for link to that. I am definitely going to contact the NAS and ask them to confirm. It sounds a bit too much of a sweeping statement to be true.

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debs40 · 10/01/2010 18:44

I don't think that is right under the 'choose and book' system. If your GP wants to refer you on, s/he can check their computerised 'choose and book' system to see if there are OT services available in another area. Services listed allow GPs to refer directly irrespective of where you live.

That doesn't, of course, mean that there are OT services on the system but it is worth asking.

You should also raise a complaint with the PCT and ask why they do not fund such services in your area.

waitingforgodot · 10/01/2010 18:52

Debs40
I wrote initially to the Head of OT then 2nd letter to the Complaints Manager within the PCT.
I am going to ask my GP tomorrow

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StarlightMcKenzie · 10/01/2010 18:59

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waitingforgodot · 10/01/2010 19:12

Hi Starlight,
I would understand this if it was a nationwide approach however certain pcts do provide OT for ASD. If OT is as ineffective as they say in their letter to me, why would they even bother with provision anywhere? This is what is bugging me. Its so contradictory. Why should our children suffer from the postcode lottery nonsense. This is one battle I am taking on. Watch this space!

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Marne · 10/01/2010 20:04

Waitingforgodot- we have been refussed OT for dd2 twice, we were told the same as you (maybe we are in the same area), aparently there is a shortage of OT in our area and they no longer see ASD children .

Luckily dd2 attends a sn nursery in another county and we are on the waiting list to see OT (weather we will get to see one is another story).

MannyMoeAndJack · 10/01/2010 20:06

This must be new cos ds was put on a sensory diet just before he started school. The school's OT sees him at least once per term and also comes to my house for a meeting about once per year. She is fab and is always looking at ways to meet ds's sensory needs.

If your ds is anything like mine, then meeting his sensory needs is similar to providing him with food and drink. I hope you can get this sorted out without having to pay privately because my ds is dx ASD with severe sensory needs.

MannyMoeAndJack · 10/01/2010 20:08

posted too soon..

I hope you can get this sorted out without having to pay privately because my ds is dx ASD with severe sensory needs and all the sensory stuff they do with him at school is of huge benefit to him. on your behalf.

moondog · 10/01/2010 20:09

It's important to know that a lot of OT input into kids with ASD is not evidence based, although that doesn't mean they shouldn't be involved.
It's hard for parents to know what is evidence based and what isn't too and in an ideal world, that would be the job of the NHS.

If you are up to it OP have a look on thes NHS site to see if there is a sufficient evidence base for what you are after.

moondog · 10/01/2010 20:14

Also important to know about this landmark ruling about whether OT is educational or medical too

waitingforgodot · 10/01/2010 20:20

thanks Moondog-off to read it now

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MannyMoeAndJack · 10/01/2010 20:22

When my ds was initially Statemented, the LA conveniently left off much mention of OT provision....cue ds's first Annual Review at the end of Reception and the school had his Statement amended to include OT provision! He is severely sensory seeking though, off the wall stuff such that his entire existence is just one massive oral, physcial and tactile experience!

debs40 · 10/01/2010 20:43

I appreciate this is a problem in many areas. There is a shortage of OTs in our area too but they will refer.

Moondog, there seems to be very little that is proven in terms of effective treatment in ASD. If we waited to see what was proven to work, we'd be sitting on our hands whistling.

It's bad enough knowing that assessment and diagnosis can take two years in some areas.

It's worse when you know that generalists (not specialists) are in charge of both diagnosis and treatment plans when I see little evidence that they have any particular expertise beyond a couple of courses and a bit of hands on experience.

It's shocking when you find that things like social communication and social skills assistance/training then gets dumped on to TAs and teachers who may have had the odd bit of external training (if you're very lucky).

It's hellish to find yourself between a clinical and educational system dealing with people who don't want to take responsibility for your child and just want to push and shove him/her from pillar to post - each arguing about whose responsibility it is to do what.

But, to cap it all, when you have children with profound sensory problems which can ruin daily activities, to have some areas which supply support via OT and some who offer nothing is a disgrace.

At least OTs understand that sensory problems are a huge deal for families and give you some suggestions to try. Even if two out of ten work, it's better than nothing.

Sorry, but so far, the only sense of support and assistance I have had out of ANYONE is from OT and that alone, in this lonely world of ASD, is worth something.

Try BIBIC.

cyberseraphim · 10/01/2010 20:49

"Sorry, but so far, the only sense of support and assistance I have had out of ANYONE is from OT and that alone, in this lonely world of ASD, is worth something."

I agree with that - The OT was interested in DS1, was willing to work with him and gave us a lot of practiacal support. The SALT 'support' by contrast has been too pathetic to even mention - if anything it just re inforced feelings of negativity.

MannyMoeAndJack · 10/01/2010 21:03

Amen to that A1 post debs.

Although my ds has been fortunate enough to have had fab SALTs, teachers and TAs over his nursery and school careers so far, both his nursery and school OTs stand out as stellar professionals.

debs40 · 10/01/2010 22:41

Well, it's all about the money no matter how they spin it. I've seen loads of posts on this board about how ABA is the one 'evidence based' therapy with a proven success record. So, does this get funded without an almighty battle? No. Of course, it does not.

The inconsistency in assessments and treatments from one area to another is a shocker. But the attitude of these institutions and their staff is often something else. Yes, they are busy. Yes, they have long waiting lists but they get away with treating people in a way you would never do in the private sector.

I worked in criminal practice as a lawyer for years. I often worked 16 hour days. I was often in police cells late at night with people in the most desperate circumstances. I was poorly paid. I seldom got overtime for working at night despite working for one of the leading firms in the country. That was the nature of the work. But you did it because you cared.

Did I ever treat anyone in the high handed, uncaring fashion I've been treated throughout this assessment process? No.

Did I ever shrug and say 'I'm too busy/have you seen my waiting list/I can't be bothered to see you or speak to you or find out an answer for you etc etc'? No

And yet these people are dealing with children?

Sorry, I'm just appalled that these people hide behind the NAS as an excuse for inaction while offering nothing as an alternative for a child in need.

moondog · 10/01/2010 23:28

Debs, I agree with everything you have said in such an articulate fashion and I am not for a minute suggesting you just give up.

I am pointing out that the need for evidence based practice needs to be flagged up time and time again. A lot of what is termed 'therapy' is made up on the spot, it really is.

Have you read the Lamb Enquiry and the Bercow Report? Essential reading for either professionals in this field and parents who have been messed around badly by the sysyem. (I fall into both of those categories btw.)

StarlightMcKenzie · 11/01/2010 03:07

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StarlightMcKenzie · 11/01/2010 03:07

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waitingforgodot · 11/01/2010 09:48

Debs40, excellent, articulate posts, thank you.
Getting back to my original point, the NHS have told me in writing to seek a private OT as they cannot provide for my son. Do you reckon they would pay for this lol.
Moondog, you are a lady in the know. I looked on that link you sent but cant find anything appropriate to our situation. By mentioning the National Autistic Society, they are obviously hoping to put me off. However it has only annoyed me further so am off to email NAS this morning. Will keep you all posted!

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waitingforgodot · 11/01/2010 09:49

Sorry, I meant to say, Moondog, what would you recommend I do next?
Also,
do OTs work for CAHMS? I have no idea at all about CAHMS and it has never been mentioned to me. I have only encountered it on here and on the link Moondog sent. Could this be an avenue worth exploring?

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