Here some suggested organisations that offer expert advice on SN.
Fans of Dr Grounds at Colchester CPOC unit - I know you're out there - step forward, I need support(15 Posts)
I know there's at least a couple of you out there because one commented on an earlier thread of mine, and reading someone else's thread was how I found her in the first place.
Have just received my info pack and questionnaire for ds2(5y).
The front page was really encouraging about how the exercises help with all the things he needs help with (auditory processing, spatial awareness, fine and gross motor skills).
Later in the pack it says they have only had limited success with integrating reflexes in children with dyspraxia, but that they give it a go anyway. ds was diagnosed with dyspraxia this week. I really want this appointment, and I would hate to think that the Dr would go into it thinking it was a waste of time, esp as I am not convinced by the dyspraxia label and have been hanging onto the idea that this therapy would really help him. I will accept that if RTT doesn't have a huge impact, then yes he has dyspraxia, and I won't be wailing with despair, or hurling abuse at the Dr if this is the case.
I was also a little taken aback by the included letter that says for £256 I could have a 2 hour initial consultation privately. It went into a nice list of what would be inlcuded, but since I have no such list of what is included for the NHS initial consult how do I decide what to do? I need to decide asap as I want to get the paper work back.
I am a but torn because 2 hours is a long consult and the poor little man has had so much of these things recently, but if that is the best thing for him then maybe I should just ask for the private session?
I am thinking that I would go to the NHS appointment, and then I could ask about a private one from there.
Ahhh decisions decisions....the biggest part of parenting that I was totally unprepared for.
That's great you got the referral largelatte. I would go for the NHS option if it was available.
The cons might have an opinion on the dyspraxia dx too.
Thanks oodles -yes it is an NHS referal but it's like an upgrade option. I'll send the stuff in now for the NHS initial consult just to get the ball rolling. If the appointment comes back as some way off date in the future then I'll take up the private appointment.
Teacher is not happy about the dyspraxia diagnosis either, so at least I am not a lone voice, and teacher sat and filled out the questionnaire this afternoon so it could be sorted before Easter hols which is great (I love his teacher).
i didn't have that private leaflet. i'd go with the nhs option. i think it was about an hr appt. ds thought it was just fun games!
Is your ds doing RRT exercises under this doctor ben10 ?
yes he should be. we have seen them twice now and have exercises for the moro which is his main one. i've been ill for some time so we haven't been doing them.
we did sensory integration therapy at the same time as doing rrt and visin therapy so don't know which one worked tbh.
the report was v helpful though i helping me/ school to understand the severity of these isses
From a schools perspective, I have always found them to be far more responsive to information given to them by NHS reports rather than private.
There seems to be an assumption that if you pay for a report it will of course favour the opinion of the fee payer and that the NHS report is unbiased .
Waiting for Sensory integration therapy for dyspraxia for DS1 - very long queue mind.
agree Auntevil. The nhs paed even said that to me that if she dx's him with asd on the nhs it will full far more weight.
Our SIT is private funded by a grant.
Thanks guys. Auntevil, I had never thought about the way NHS vs private report would be seen - very good point.
Ben10 - good to hear what was included in your appointment. Ds's teacher thinks there is an auditory processing issue, which I do too, but have never mentioned to teacher so he's come to his own conclusions.
Really excited about this as I think it is just what he needs.
DS hears everything at the same volume apparently.
Interesting and must be challenging for him. DS has some permanent hearing loss but still flinches at loud sounds which is why I turned down the option of hearing aids.
He has ear defenders for noisy things like beavers. He struggles in the playground and in class if there is background noise.
DS has been assessed for ASD, we're just waiting for the results of the panel so obv a bit different. He has so many sensory impairments.
I run a small charity called ADHD+ Support (www.adhdplus.support) and we recommend CPOC to all the families we work with and get schools and GP's to refer. So we were saddened to hear that CPOC will hear in the next two weeks that Essex CCG will be closing them down as an NHS service. Dr Grounds has worked tirelessly for 24 years within the NHS to help families and is understandably upset by this news. She does hope to continue providing a service privately but would much prefer the service to remain under the NHS.
We've made a petition – will you sign it? We have worked with hundreds of families and have been able to refer them to the CPOC clinic in Colchester. This has been life changing for the children as well as their families. It allows them to gain access to education through helping with reading, reducing anxiety and helping with co-ordination etc. This is an invaluable service and without it families and schools will be required to do private referrals. As such many kids will be let down and will never be able to access their full potential. Please sign this petition. Once we have 5 it will be published on the government website. Then we just need ot push for aenough to force a discussion in parliment on how we support our children who try and cope with Dyslexia and neurological conditions.
Click this link to sign the petition:
"Stop the closure of the last NHS CPOC (announcement due Oct 2016) & open more"
Essex CCG announcing closure in Oct 2016. Clinic supports children across Essex to enable them to access education. Costs will climb as families push schools to do private referrals or Children with Dyslexia & Neurological conditions will be let down & will fail to achieve at school and in society
This Vision and Multi-Sensory Training Clinic, run by Dr Annette Grounds, is for children between the ages of 4 and 14 with specific learning difficulties such as dyslexia, dyspraxia, ADD/ADHD and autism. Provides assessment of child's problems and gives advice & exercises to maximise the child's academic and social progress. www.colchesterhospital.nhs.uk/vision_training.shtml
Sources of explanation of serivces:
Useful links in addition to signing petition. Remember the aim is to stop this one closing and push to get more opened instead. If we have a good argument for keeping it then the question is why isn't there one in each county.
Write to your Local MP
North Essex CCG (CCG responsible for clinic)
Mid-Essex CCG (apparently merging with North Essex, however also largest referrer to CPOC)
For updates on the petition please check out our Facebook page (www.facebook.com/adhdsupportuk)
I hope you will join us in trying to save this service and go one step further and push for them to be opened in every county too.
Sorry did something odd in above message.
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