VERY DYSPRAXIA - URGENTLY NEED PARENTS TO HELP FIGHT FOR NHS SERVICES

[HayleyK]

Hi,

I am involved with the review into services provided by the NHS for children with verbal dysrpaxia as a parent representative, looking at what services the NHS provides for kids with verbal dyspraxia. The deadline for responses is 25 March and currently only 10 parents who have children with verbal dyspraxia have responded.

I don't think enough parents with kids with verbal dyspraxia have been told about the review.

It would be extremely helpful if you were to add to the numbers and help push for better services for kids with verbal dysrpaxia. If so few people respond, then the conclusion may well be drawn that no extra services are needed - which from first hand experience is very definitely not the case.

This is the link to the consultation document:
www.ealingpct.nhs.uk/nuffield_consultation.asp
You can fill it in quickly and easily online here: www.ealingpct.nhs.uk/Nuffield-Questionnaire.asp or sending in your response by mail.

Additionally, if you have any contacts who also have children with verbal dyspraxia, or speech therapists, drs etc. with an interest or experience, it would be great if you could forward this on to them.

There is also a 'conversation cafe' from

12 - 2 pm on the 9th March at the Royal National Nose Throat and Ear Hospital. Refreshments will be provided and you are invited to drop in at any point during the advertised times to discuss the consultation with one of the facilitators. It would be helpful to know if you were coming for planning purposes but also please turn up on the day.

There are also the focus group sessions planned for 16th March from 2 - 4pm in Ealing Town Hall W5. This is not a drop in session as we would like you to be there for the whole meeting Please would you let Fiona Harcombe know if you are intending to attend this event [email protected]

Please feel free to contact me if you want any more information. I've also set up a verbal dyspraxia facebook site www.facebook.com/home.php?sk=group_175479645803269&ap=1

Thanks,
Hayley

sounds good, shame not in London though

The review is in London, but is likely to have wider implications for anyone with kids with verbal dysrpaxia in the UK. At least having one specialist unit for verbal dyspraxia in the country will give people an opportunity to relocate if they are really desperate; if they don't want to relocate then it may provide a working model for units to be set up elsewhere; and at the very least it will provide a centre so data can be collected and evidence based research to show what those of us mums with kids with this know already but the NHS want proof of before spending - these children need really intensive therapy to progress and what is currently on offer on the NHS is not enough!!! Really need EVERYONE with an interest in this to respond to the survey, London based or not! Thanks very much. Really appreciated.

I sent only one to you. Maybe you have a whole lot of different user names which would explain the confusion. In which case, I can't be blamed for your multiple identities!

Either way, it's a bit harsh of you to moan and silly to discourage someone trying to do something nice. I'm trying to find as many families with kids with verbal dyspraxia to try to get the scary lack of NHS services for these children improved. It's not for my child's benefit - I had to pay crazy amounts for all his speech therapy and he's now much improved (in 3 years, we've had 20 sessions only on the NHS). You sound from your posts that you have experience with verbal dyspraxia and know how little provision there is compared to what is needed to get children verbal.

It would be more constructive of you instead of moaning about having to open 4 e-mails (was it really that hard for you?) to get on and help find people to respond to this.

Hayley I have to say your response to justabout (of whom I have no previous experience as I do not you) has put me off entirely! I found your post extrmely rude to her!

My DS has vebal dyspraxia, yes i have fought and it is ongoing but we have been lucky enough to have one to one SALT since Septmeber, each week, on the NHS. I KNOW people have problems with SALT and NOT JUST for dyspraxia, but not always.

I clicked on your link and tbh, I don't feel I can fill half of it in. I do not not have enough experience of Nuffield in my area, and this is also on about ealing - a place of which I know nothing, sorry.

But your attitude alone has been enough to put me off

I think you have both misunderstood. It's not my campaign. Am a mum with a kid with verbal dyspraxia like you both. I didn't draft the consultation paper and if people don't want to fight for improved services for their children it isn't me or my child who are affected. I dont need this, but i do see others that do and wanted to help. And yes - I sent one message only to your user name. No error. I checked my message box.

I just want mums who have an interest in verbal dysrpaxia to have their say on what services they think would be good for themselves, or for other families with children with verbal dyspraxia.

The service unit that was closed down in Ealing, was a specialised speech centre with the very best and most experienced therpists for verbal dyspraxia giving therapy every day for the most severe kids with the disorder. For some children that's the only thing that is going to make them verbal. It was closed down as a cost saving initiative, with the excuse that they had one less child for a term one year. The parents involved at the time all objected loads and took it to government, which led to this review which is being done into its closure and whether it should be reopened (either in Ealing, or near Kings Cross/Euston or other. I have met some of the therapists who work there and they are geniuses at what to do for children with verbal dyspraxia (e.g., we had worked for a year to try to get the 'k' sound and one of their therapists got my boy to say it in 5 minutes)

My personal opinion on what would be great is for Option 4 of the review - i.e., a speicalised unit to be reopened for the children who are really severe and virtually non verbal. My understanding is that for some children, this is the only thing that will allow them to become verbal and I think its awful that they closed it - appreciate big budget cuts, but these are hugely vulnerable children. I also think there needs to be good weekly therapy available for kids who are less severe, but still in real need of help. Where the local therapists aren't trained in verbal dyspraxia, then I believe that this would be best done by having your child at the Nuffield centre (in Euston) for a block of sessions www.ndp3.org/about-the-nuffield-centre.html and then having local therapists liaise extensively with the Nuffield to allow them to carry out the treatment when the block at the Nuffield stops.

but - this is my opinion and I didn't want to sway others from having other thoughts. I just want to try to get the best services for children coming along the line after me - knowing that my experience is that if you haven't got money at the moment and certainly if you are in my borough, there was precious little help available for your child.

Am feeling bit like I'm going to meetings to try to help secure services that mums with kids with verbal dyspraxia would want and I thought really need and that its disappointing that mums aren't filling in the review. I think if we don't fight for services for these kids, then I don't think anyone else is going to. And I genuinely am not involved in this review for self interest in any way - like I said, my child is now verbal and we've done it privately. I just know if I hadn't been able to then he would be non verbal still and it seems so sad and unnecessary that this is hapenning to kids that I wanted to do something to help.

I'm sorry if I was harsh to you - am grumpy as I stayed up until 3am trying to see if any of the mums on here want to take advantage of the review to get better services for their children with verbal dyspraxia. I was trying to see if you needed help for your child and then upset that you think I'm spamming you.

In terms of whether I'm interested in you - I've put together a facebook page with every single thing that I can think of that might help someone else with a child with verbal dyspraxia. You're welcome to join it. I just was on a mission after the meeting yesterday to see if mums were interested in responding to the review and was focusing on reaching as many mums as possible.
www.facebook.com/home.php?sk=group_175479645803269&ap=1

To be frank, your comments and maxybrowns have made me really question whether to be involved in this process at all.

Hi there,
I am not a big mumsnetter, but I browse occasionally. My daughter has cleft palate and recently diagnosed verbal and oral dyspraxia (a bit of a double whammy). I'll look into your Nuffield link tomorrow - I had seen things about the unit on the AFASIC page but didn't realise that it had implications outside of London. I've requested to join your FB page if that's OK. Thanks for the info x

Absolutely! And please add on anything helpful you can think of for anyone else to it.

Think sadly there are a lot of double whammys going on...my understanding is that the rule, not the exception is you get something else with verbal dyspraxia. We got lots of mobility/low tone/general dyspraxia stuff.

Might well be worth you calling Pamela Williams (head SLT at the Nuffield Centre www.ndp3.org/about-the-nuffield-centre.html) and asking her whether she has experience of cleft palate with verbal dyspraxia - she may have some good advice for you. Also even if you are outside of London you can apply to the Nuffield CENTRE for treatment. Will mean working out how to get there, but they may do you a consolidated 2 week block for example in a holiday, instead of weekly sessions. Speak to Pamela and work out whether there is a way to make it work - they are incredible there!

In terms of the Nuffield UNIT - this is different to the CENTRE. It was based in Ealing and was tied to the centre and was a specific nursery/early years setting for kids who had v severe verbal dyspraxia. My child hadn't been diagnosed by the time they closed the Nuffield Unit so I don't have personal experience of it - but from what I understand it was simply amazing and for some children the only way they are going to be able to overcome this disorder. So, yes, not too convenient if you aren't in London, but if you had a 4 to 7 year old who had very severe verbal dyspraxia, you might just want the option of working out a way to get them there - as from everything I've researched this would be your absolute best chance of helping your child. Top people in the country trained and experienced at working out exactly what your mouth is doing and how to sequence and improve etc.

I think children from all over could be referred to the unit depending on whether you could convince your local council to pay for it.

In any event, the unit would also have another benefit to all families with kids with verbal dyspraxia, in that it would provide a centre where research could be done to look into what most effective treatment is about this condition - and to provide some evidence to fight for services for it elsewhere. At the moment there are a lot of objections to funding treatment for kids with verbal dyspraxia on the basis that there is very limited evidence into this condition. The unit might then be able to be used as a model to use elsewhere in the UK if it is successful and enough children benefited from it.

So yes - please fill in the review document! Thanks loads

to justabout happy. Yes would really love you to circulate details about the facebook page. Thanks loads. I'm meant to be meeting with Afasic to look at whether there is a better place for the page then facebook and whether it's worth making it an Afasic page or keeping it separate. Would love any opinions on this. Want to reach the widest audience and make it the easiest place for people to add to and share thoughts and ideas.

Thanks also for your thoughts on the review. Think you're right. I didn't want to impose my views on people, but actually every parent who I've come across who has been engaged in the process wants a unit for very severe kids and an improved therapy service for those who are less severe. So, it's definitely worth pointing out to people that this is Option 4, to save people the time of wading through 30 odd pages of the review (with Option 1 being the unit and also important to agree with strongly).

So - I'll redraft my e-mail round to people to explain bit more clearly what this is, who I am, what seems to be best option for parents with kids with verbal dyspraxia and why its relevant for people outside of London/Ealing. Does this sound good and do you mind if I send it to you later for your thoughts? Then once I've got a good new email, I'll carry on trawling through here trying to find parents with kids with verbal dyspraxia to spam with new e-mail

yey - so we got a plan. Thanks for your comments. Sorry again I was stroppy in my first mail!