Any ideas on how I can solve issues with OT refusing considering adaptations for sleep?

[1995SENNDMUM]

My son is 5 and has been on melatonin for several months. It helps him fall asleep but not stay asleep, and he wakes for long periods overnight. The main concern isn’t the waking itself but his sensory-seeking behaviour when awake (jumping, body slamming), which can lead to injury. Because of the timing and duration of these wake periods, a second dose of melatonin doesn’t feel appropriate. As he’s getting older and bigger, we’re therefore exploring safer sleep bed options. We ve got a travel bed a safebed 100 that helps a bit but it's definitely not going to last forever.

I self-referred to OT last year for sleep adaptations, but they are refusing to consider this. Over the past three months there have been multiple discussions between OT and the LD team, with the conclusion that the LD team must prove there is nothing more they can offer.

However, now that he is 5, the referral criteria have changed and we cannot obtain an LD diagnosis via the NHS itself to prove he has one . I have provided his Educational Psychologist report from the EHCNA, which shows significant developmental delay across areas (mostly 0–18 months, with motor skills being higher than that range but nothing else) which apparently "might be enough" according to OT.

However, the melatonin was prescribed following a sleep workshop and several months of appointments, sleep and activity diaries, and support from the LD nursing team 12 months ago, I therefore feel we have already exhausted what that team can reasonably offer.

So, I’m looking for advice on how to get OT to stop messing around really, as I m just feeling stuck in NHS bureaucratic hell at this point.

If you mean you have been refused a DFG, you can complain to the council then go to the LGO.

There are other bed options once DS outgrows safe place 100. If the safe place 100 is sufficient for now, they may not revisit a DFG (which are based on needs rather than diagnosis) &/or an alternative bed until nearer the time when it isn’t sufficient.

Has DS tried anything else to help with sleep? Does he take immediate release melatonin, prolonged release or both? Has DS been referred to a sleep clinic (not just a workshop)?

Sorry I really wasn't clear at all in my post.

I haven't gotten that far sadly, OT are refusing to do the assessment for anything to go to the council for a DFG until the learning disability nurses say they ve done everything they can which they did prior to getting the melatonin last year, something about "deprivation of liberty".

He's on the liquid immediate release version of melatonin couldn't get the MR tablets in him with his sensory issues and all his safe foods are rubbish for trying to hide a tablet in, can't hide a tablet in an apple or a melon or a chicken nugget 😂 (I am of course grateful to have an autistic child that eats fruit, just won't touch a yoghurt or similar).

About 6-7 hours after his dose he wakes up, so 3-4 am ish and then it's lots of jumping and throwing himself about for an hour or two. He needs to be up by 7.30am for me to get him ready for transport, so a second dose at that time I could ask about but whether it's going to then impact him at school doing it that late.
He's on piriton for his eczema occasionally, which was suggested might make him drowsy but no such luck.

I ve got an FOI in with the council at the moment to try to confirm the average DFG waits as the support team at DS's sen school advised that other parents have been told 4-5 years for some of OTs adaptations.

I m a little scared of having an older child with the same issues and him not fitting the bed but not being physically strong enough to keep him safe at that point if it's going to take that long in all honesty if they point blank refuse to do anything now. I did outright ask the OT if they knew how long waits are, of course they said "oh we don't deal with that part, only the assessments, so I ve honestly no clue".

Should have another paeds appointment anytime soon, so I ll ask about the sleep clinic situation.

You could complain about the OT service.

Speak to the council. They shouldn’t be refusing to assess for a DFG just because NHS OT services won’t support a request.

4-5yrs for a DFG that isn’t complex (and even then maybe not) would be the LA unreasonably dragging their heels, and a pre-action letter is likely to prompt action. Even if not the JR route, exhausting the LA’s complaints process then going to the LGO won’t take that long. DFGs don’t happen overnight but 4-5yrs is excessive.

I already have a complaint in due to the OTs teams communication being awful in general, I ll escalate it further now as all they did was forward it onto the team leader.

In all honesty, I would quite happily go through the complaints and LGO process. However, we couldn't afford the quotes I got for pre action letters during the EHCP process delays we had when DS was younger, so if they re anything close to that price for this sort of issue it d be a non starter (we re homeowners and our income is slightly over the line for legal aid). Although I bluffed with the EHCP situation and said I ll go get a letter then and they believed the threat immediately so I guess there's nothing to lose trying that again.