Here are some suggested organisations that offer expert advice on SN.
Why has it taken me threatening to contact my local mp to get dd the OT she has waited forever for?(18 Posts)
Dd has AS and one of her main needs is sensory. She came out as having quite severe sensory intergration needs. I was promised she would be seen as urgent a year ago. Have rang over the past year and no one has got back to me. So yesterday left a long message saying that unless someome got back to me within the day I would be onto my local mp as I had had enough fighting for what my dd needs!
So about 2 hrs later I get a call saying that they will do a school visit and dd can start having a weekly sensory integration session once a week starting in a few weeks.
Obviously I am over the moon that we now have this but I am angry that it has taken too many phonecalls and the threat of my mp to get it!They have never ever got back to me before Also dd has gone a year without therapy and they left us with no help after the listening program didnt work.
for you and dd that they have kept you waiting so long. Its maddening when they tell you the referral is urgent and then you hear nothing for weeks - I dread to think how long you'd have to wait if it wasn't urgent. Well done on you for keeping on at them though. Hopefully now your dd will finally get some help.
Thing is as I said to the OT who rang life is stressful enough without the chasing we have to do. Oh and school finally got dd's wobble cushion last week, a year after the OT insisted she had one. Yes another reason I am pushing for the small sn high school.
We already have things in the hands of our MP due to the complete incompetenc of NHS complaint procedure.
DS only 5 months old! I suspect poor MP will be able to pop in for tea before long.
It is amazing how quickly they respond, isn't it? After 8 weeks of hearing nothing and with no response at all to my enquiries, I fired off an angry e-mail asking them to respond within 24 hours and CCd it to MP - 2 hours later they responded with an apology. Still no explanation for the delay and no result to the investigation though I already know it is a complicated case and will take some time - but bloody say so. If they responded initially with 'give us a bit of time on this one' (or words to that effect) I wouldn't have chased anyone.
It's given me plenty of practice for the future though.
I suspect one of the reasons there is no equity of services around the country is because it is so difficult to provide evidence that most therapies work every time. There really isnt time or funding in the NHS these days for someone to use techniques just because they got good results last time, or with a similar patient. The push is for evidence based practice, ie concrete proof that a treatment works and is reproducible. (sp?) SI is particularly difficult to prove, and can inviolve a huge amount of effort on the part of a child's family and educators, with often very small returns.
These small returns may be more than enough for a family that is desperate, but may not be enough for statistic hungry health service suits.
Tbh they could cut most Paediatric therapy depts in half if evidence was required, which would make the waiting lists even worse.
OT is the hardest to prove, there is a sort of acceptance that physio and S< work, but there really isnt much good research, and for good reason I think - every child is different, and most therapists just want to get on with treating their patients, not spending years working on statistics.
That is appauling that you have had to wait a year for OT. DD2 currently receives weekly OT (along with a host of other therapies), the main reason being Sensory Integration and I now know that starting as early as possible is crucial to their development. So to leave you for a year is disgusting! Well done on pushing for this though, it paid off in the end.
I didnt say it did.
SI is relatively new in this country, and not all OTs are trained in it. It is not part of their basic training AFAIK. It is also largely unproven in effectiveness - hence my point that to those it works for, it is a godsend, but it isnt the answer to all problems, which some people (parents and therapists) seem to think it is.
I am not trying to wind anyone up with this. I am just trying to state that it is not the therapists' fault there are ridiculous waiting lists. The NHS is not fair with its funding - and it is often almost as stressful for the staff as it is for the partients waiting for treatment. Often the reason WLs are so long is that some of the staff are on long-term sick leave, often stress related - and they wont get replaced or covered for in many cases, so the remaining staff have to pick up the "slack", causing more stress and so on.
I think in some way NICE is trying to get rid of the postcode lottery by assessing all treatments, whether drug, surgical or "therapies" and deciding whether they are valid and therefore fundable.
But then you get situations like the ones with the cancer drugs, where people who would benefit from a treatment are denied it because some "evidence" says that "the majority" either dont benefit, or that they dont benefit enough to make it worth the money. But that doesnt make it better for the individual who's doctor reckons they would be one of the ones who could have benefitted.
the faster this government tries to make everything nice and equal everywhere, the worse it seems to get, yet the more money is wasted. For every area with crap paediatric services, you will find a Trust whose CE likes nothing better than to yap about how marvelous their Cardiac services are, or whatever.
None of which helps the individual, who will find it harder to get the service they want, while being told that they have "choice" and "flexibility".
I am waiting for a surgical procedure for myself. I was offered it on a date that was totally inconvenient (I am a single mother with no family living near). When i queried it and tried to get it changed, all they could do was offer me the treatment in a hospital 50 miles further away! That ticked a box somewhere for patient choice.
I forgot to state in my first post that dd had waited 3 years to get the assesment last year and after that we were seen as urgent and waited a year until now. So all in all 4 yrs wasted
jeez 4 years on the list, that's shocking. Hope once you finally get it that it helps your DD.
Paeds in general is poorly funded, although there seems to be a rush to have purpose built children's hospitals, which might attract a bit more funding.
But it never seems to get the profile that say, cardiac and oncology services get. And community services are always the Cinderellas compared with acute, so the therapies tend to come last.
Blossomhill, we had exactly the same,it is totally infuriating. Good luck.
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