Anyone made had private assessments for their dc?

[Em8888]

Hi everyone,

I am really struggling with getting my ds seen for an assessment.

He needs a lot of support and 1-2-1 at school and he needs quite a bit of help at home. He also gets over anxious about his routine being changed and has now been given ear muffs by the school to help him deal with classroom and school noise.

He has been referred to a CDC previously when he was 5 (he is 7 now)and they said he was just immature as he is a summer born child but if concerns continued, to contact them for another assessment with the paed.

However, we have since moved and now we are having to wait another year as we are under a differing LA. I have tried to see whether he could be seen sooner as he has been referred previously but seem to be told that they will look into it every time I call and speak to the dr's secretary.

He was also previously referred under the old LA to OT and has been diagnosed with hypermobility.

I was wondering if anyone looked into the option of going private and what the costs were to do this and where to begin.

I feel totally stuck at the moment and wanted to see what other options there could be?

Any help would be most appreciated xxx

Try getting in touch with Patient Advice and Liaison Service, push for the date to be brought forward. Explain why you can't wait a year.

While private diagnosis are useful, you will need an NHS one too. So keep pushing NHS.

We didn't go to private person for diagnosis, but have been to private people for reports to determine what my DS needs are and therapy.

There are obviously lots of different potential benefits to getting a diagnosis privately/more quickly, the benefits for you in (more confident you know what you are dealing with), getting other referrals for him (e.g. SALT or OT - it sounds as though he would benefit from a sensory assessment with OT) then there are the benefits of giving school a 'framework' to work from/better understanding of his needs. If you need a diagnosis with a view to applying for a Statutory Assessment of his needs, be aware that not all LEAs will 'accept' a private diagnosis (although this is clearly wrong!!). Do you have a good relationship with the school? Are they giving him all the help he needs? It might be worth asking the SENCO if they would welcome an assessment sooner (to butter them up, keep them on side!!! I do find that school appreciate a regular stroke of the ego). Private assessment is of course always a possibility, if you feel this is something to pursue it will cost probably at least £500 and possibly substantially more than this.

In my case, I had a private assessment done for my dd2 in order to make school aware that my dd2 had issues over and above her hearing loss. It cost £700 and the assessor did an in-school observation and liaised with school. It worked very very well indeed and was a game-changer for us: dd2 now has a lot more help in school. The private assessment failed to diagnose her though (said she did not 'meet threshold') but the private assessment went along in tandem with NHS (I sent private report to NHS) and the NHS diagnosed her a while later.

I would say you can't do enough homework in finding the right person to assess, try and get really good recommendations, you want someone who is not only knowledgeable but can write a clear and concise report that is easy to digest for busy teachers!!

We had private assessments costing £900 this included the ADOS and diagnosis. It's helped us without doubt both at school and to understand things better. The reports were fantastic and school have put the recommendations on those reports in place, bar the 1:1. Ds gets group support. We are still waiting for nhs dx hopefully early next year. Nhs paed asked me where we go from here Now we have a dx, told her I wanted the communications disorder clinic assessments to continue. As already said you really do need to do your homework when choosing who to carry out these assessments. It's vital. Although we went private we are still waiting for what we ultimately want which is the nhs dx. Good luck with whatever you choose.

I had a private OT assessment done for ds1. It cost £650 and included a sensory questionnaires being completed by myself and school.

He still did need an nhs one. it was less thorough with no sensory questionnaire, but the nhs OT will go into school now. I brought the OT appt forward bt several months by contacting the local MP about the delay.

Thank you lovelies for your responses.

I had no idea that you have to get an nhs assessment/dx.

Like you say, of course it's all for him, but it's for us and his school as well. I just can't believe how much you have to keep pushing and pushing. It's been so emotional the last few years and I feel that once he had an assessment or dx, things will start to fall into place - whether this is true or not, I'm not sure!

I've just got to keep strong and keep pushing, if needs be, I will write to our mp about it.

Glad that there's such a strong support network on here xxx

Just push and push! I am new to this and still have lots and lots to learn but the support network on here has been amazing. My nhs paed tried to blame Ds issues on my parenting, horrible experience, made me feel rubbish. It helps if school are on your side and backing up what you say, at the time we were referred to nhs paed , school didn't agree with my worries, they do now. Good luck on your journey for you and your child.

As an aside, ear protectors for hyperacusis aren't really recommended except for short periods to get through a particular issue - eg to cope whilst walking through a train station. That's because if earmuffs are worn more routinely you tend to see an exacerbation of the sensitive hearing on those occasions they aren't worn - leading to a vicious circle of needing to wear them more and more and hearing getting more and more sensitive. I would only let him wear them for short periods for specific activities (eg for lunch in the dining hall) if at all.

This link talks about how ear defenders can exacerbate things if used too much:

www.tinnitus.org.uk/hyperacusis

Thanks again guys, I will keep on fighting - just can't believe how much you have to and if needs be, I will go to mp.

Ilikemysleep - the ear defenders he has been given are very light weight - we have tried them ourselves and they hardly block out any noise at all. He has had his hearing tested by the school nurse as a result of this and he passed it fine. However, I don't think it tests for anything linked to sensitivity. He does tend to wear them for short periods of time like you say - in the school hall, when he is finding it hard to cope in class etc.

Re private assessments, I have just had the report from CDC following dd2's dx of ASD. It states how helpful the private assessment (which, incidentally did not give a dx) was in adding weight to the case for a diagnosis from the NHS. So clearly private assessments can sometimes make a valuable contribution to the process.