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How long did you have to wait for all your DC's therapies to kick in?

14 replies

mm22bys · 02/11/2007 15:33

Hi,

I am getting frustrated with lack of progress from the NHS on DS's therapies / treatments.

He has glue ear in both ears, profound deafness in one ear, the other ear is compromised, and we were told today that the wait on the NHS for grommets is "endless".

I have received a letter from Portage, but we are on the waiting list. He is no. 7, but they said that is meaningless as it depends on their caseload - might hear back from them in a "few weeks".

There is no PT in our CDT (the one I met is from overseas and she apparently has a "better job").

All OT seems to want to do is get him a special bath seat and play seat (well, at least the younger one does, the more experienced one this week did say he sits too well independently for a Ladybird, Giraffe, or Busy Bee. She thinks he might benefit from a low floor table though, and I agree with that).

SALT so far has comprised one home visit where they assessed his eating and drinking, which they said was better than how I described. They can offer one one to one session each two months, or one group session once a month.

He will be reviewed again by the CDT dev ped in six months from his original assessment, which was the end of September. Oh and if he doesn't respond to therapy, which they will provide only in one area at a time, rather than increase the frequency they will reduce it.

We took our concerns to the Health Visitor in June, and he had his assessment in September. I think we will be lucky to get Portage, etc, before Christmas. Each day he is getting further behind, and I am getting frustrated!

Anybody else find that NHS therapies are virtually non-existant? I hear on here about the very young babies who have been dxed with Downs or CP (or whatever) and how great the NHS therapies have been, but I am not seeing it ("all" DS2 has is development delays, comprised vision and hearing and mobility problems, but no definite dx).

Yes I am a bit fed up and feeling a bit hopeless!

Thanks if you read this far...

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Peachy · 02/11/2007 15:43

Ah yes

ds1 has had a dx 18 months almost, has had NO input from anyone related to the CDC- has been discharged today as they have nothing to offer him.

DS3 is stuck on more waiting lists than... well you know. He was too old fopr portage when he got even on the top half of the list; OT phoned today after a year and had gone home by the time I called back at 11am so will hear next week; physio wasn't needed and we knew that; SALT assessment has happened after SERIOUS pressure was apllied (and he was non verbal at the time), we now get appointments erratically- one next week after LEA chivvied them up, one beofre was August when paed chased them up. LAsy he really needs to see isn't taking anyone on to her workload for the forseaable future.

DS3 has no diagnosis and the only proposed one is so very wrong we feel that it wont be accepted should they confirm it. APed wants to wait for a good while before DX.

DS2 has needed follow up for glue ear since he was 4 but they won't do anything bar monitor yearly atm, he's almost 7. he has a speech defect which is related but nothing else at all thankfully.

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needmorecoffee · 02/11/2007 16:52

dd has severe CP and we waited ages for any therapies. She's also visually impaired and we're still waiting at 3 and a half for something to help with that. Portage kicked in at 1, one hour a month for 12 months then stopped. Physio took about a year to get regular and OT and SALT has been very patchy.
Its like they are waiting for school by which time it will be too late.
You have to keep pushing and pushing and pushing. Its tiring and depressing.
Sorry couldn't be more positive.

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mm22bys · 02/11/2007 17:47

It's pathetic.

I took him to the GP today because he had a temperature and was sick overnight and the GP couldn't even find a thermometer to take his temperature....

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mymatemax · 02/11/2007 22:27

MM22BYS
Provision varies all over the country here SALT is by far the slowest of the services.
One trick I have learnt & I'm not sure if all areas have the same set up BUT therapists may be working in your area but not under the CDC.

Because ds2 had physio from birth he was assigned to the community physio team who are completely separate from the CDC & pretty much run & prioritise their own diaries, he has also used community OT & OT from the sn preschool outreach service again shorter waiting lists than the CDC.

Sometimes you may be allocated to a caseload (cdc) because you meet their criteria but it may not be the quickest way to access therapy.
Good luck
Does your area have a sn specialist HV if not ring your local health authority childrens services dept & ask what else is available.

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coppertop · 02/11/2007 23:29

Ours seems to vary depending on god only knows what. Ds1 was put on the pre-school section of the OT list at 3yrs old and ds2 at 2yrs old. Neither ever made it to the top before reaching school age. OTOH ds2 was offered sessions in the sensory room which he enjoyed.

There is a 6mth waiting list for a SALT assessment and a further 6mths for actual therapy (45mins per month usually). Ds2 was luckier as he entered the system in a different way and so only waited one month.

The CDC waiting times are better. IME there's a 3mth wait to see a Paed for an initial appointment and another 3mths after that for a full assessment.

The portage list depends on their current case load. the average wait is probably a couple of months or so but I'm not 100% sure.

I can see how much ds2 has benefitted from early intervention (2yrs onwards) and just wish that ds1 had been given the same opportunities.

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mm22bys · 03/11/2007 09:32

It is shocking. It is no wonder the ped gave such a damning prognosis - they are probably aware that therapy can help but there just aren't the resources. In the meantime these kids are having the most precious times when the brain is making all its connections (0 - 3) wasted.

It is so inefficient, when he had his assessment he was "assessed" by so many different people - OT, PT, SALT, Social worker, and ped, and there were other specialists watching us from behind a screen. I think he needed to see a ped, but really, why can't one single person do an assessment? I am sure I could learn how to do an assessment from reading very mainstream books like "What to Expect in the First Year".

Even if he couldn't be seen by an actual therapist, they could still provide literature or internet resources to give the parents something to work on during the it seems endless wait.

Do any private organisations offer Portage?

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needmorecoffee · 03/11/2007 10:11

Have you thought of Brainwave? Its not cheap but I'm told they do a fantatsic full assessment and then design you a prog to carry out at home. We're taking dd in Jan and because we are on benefits we've applied to the Caudwell trust for help with the fees and Brainwave also fundriase for you.
It means something is being done that is positive while you wait for the, frankly useless, NHS therapies.

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PeachyCosmicExplosion · 03/11/2007 13:44

brainwave or bibic- worth approaching both imo and seeing which one 'fits' for you (knowuing them both)

it was BIBIC intervention that helped get ds1 and ds3 their dx's and DLA, even statements when nothing else was moving

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Reallytired · 03/11/2007 21:36

Its a postcode lottery. In Hertfordshire we had an awful long wait for SLT (8 months) , and audiology (9 months) but the wait (four years ago) for physio was 4 months and the wait (last summer) for occupational theraphy was about 6 weeks.

I'm sorry that you are having such an awful time. If your son is having a long wait for grommets it might be worth asking about hearing aids. My son has hearing aids for severe glue ear.

My son has hearing aids because his last set of grommets were a total disaster. However my son only had to wait a few weeks for hearing aids and it would have been a 6 month wait for grommets.

Have you tried phoning up the various theraphists. Its often worth being persistant but polite. You might get someone's cancellation.

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TotalChaos · 03/11/2007 23:17

Portage - non-existent in my area

SALT - DS will be seen after about 8.5 months on the waiting list - but this is only for an assessment, there will be a further waiting list for therapy

Paediatrician - probably be seen after 11 months on list.

Neighbourhood Early Years Service - appear to be offering virtually sod. all support from what I can see.

Audiologist and Opthalmology - only things that have been OK, a mere three month wait.

Like other posters have said the lack of early intervention is dire. Our area has an ICAN nursery (specialist speech). But without the NHS SALT appointment, DS can't be considered for it.

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needmorecoffee · 04/11/2007 08:58

Its shocking how bad this is especially in the crucial firts three years when the brain is developing. This is when early intervention is vital.
I'm writing to my MP and everyone should do the same. Probably wont get anywhere but if people don't complain it will only get worse.

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PeachyCosmicExplosion · 04/11/2007 11:52

I know NMC, I kept repeating my Psychology stuff about the window for language development being up to the age of five (approximately) at people and pointing out that ds3 is now past 4, and it STILL takes a call from yet someone else to get a single appointment. And is it therapy? Uh uh. The first SALT didnt know what to kae of DS3 (because he interacted in a game of trains- yes trains, hs favourite thing of all time woman, and ASD kids if thats who he is CAN intereact sometimes!) so we have to start again with someone else present. AaaarghhH!

Now ds1 is apst all that we've applied for an assessment for direct payments as we can see what he needs (and the council has a surplus in that budget ) but woith ds3 there's zero.

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needmorecoffee · 04/11/2007 13:48

Its enough to make you collapse on the floor and say bibble.
If I was paid secretary rates for the amount of phone time I've done chasing up things dd is entitled too and needs I'd be a rich woman.

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TotalChaos · 04/11/2007 18:39

you are right NMC about complaining to local MP. I have made my views felt about lack of SALT wrt to Bercow review, so I have done some productive moaning I hope.

Forgot to add - no SN specialist HVs in my area. Last contact with HV was back in March to do SALT referral, she's made no effort to check things are OK, and I've not bothered to contact her - I feel a general lack of connection given that she is HV no 9 in 3.5 years, our geographical location is apparently a very vulnerable caseload so they can't keep the staff!()).

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