Access to therapies and the like

[wrinklytum]

Just a random musing really.Reading the sn topic has made me aware of just how lucky I have been really.DD was offered Portage straight away,and we have a lovely worker an hgour a week.She sees physio 1-2 weekly for half an hour,speech therapy every 2-3 months.She has been provided with splints and a walker pretty quickly and attends a portage nursery group with me and brother weekly.Reading others experiences it seems we are well catered for.Is there really such a postcode lottery.It seems a real shame.Wouldbe interested re others experiences.Thanks xx

Hi Wrinkly tum - it sounds like you're doing really well and your dd is getting what she needs -

Here's our experience - diagnosed with CP a year ago. Physio - every 3-4 weeks (after initial 3 month wait). OT every 2-3 months. Have applied for portage before xmas and just had a letter saying we won't even be assessed until July. No access to special playgroups or nursery. I begged and begged for 'piedro' boots for months and was told no. When she was reassessed by the paed last month we were suddenly told she needed splints asap and we got them last week. No walker or mention of any additional equipment.

We're in Bournemouth btw - would be interested to hear what it's like elsewhere.

Just from reading others' posts I think there is definitely a bit of a lottery when it comes to how flexible and approachable child development centres are, too. Ours is a bit chaotic, and seem to lose physios faster than they can recruit them, but their hearts are definitely in the right place.
DD has had a lot of feeding issues, especially in the early weeks afer SCBU, and our SLT always took my calls and fitted us in for appointments even though she wasn't even working with us regularly at that time.

I think we're doing better than others in the postcode lottery, in most respects.

TBH, DS1 isn't receiving much in the way of services right now. He has had some SL&C support at home and at school since last summer, though and finally got an OT evaluation, this past month, just over a year after his initial referral. He is also at our village school nursery - a lovely small school with a fabulously caring ethos and staff with lots of special needs experience. His key worker had experience before working in schools nannying a boy with autism and a very similar personality and abilities to DS1, and the relationship between her and DS1 is just fabulous. His additional specialist support has only recently kicked in, though, and for only 0.2 timetable. The local Ed Psych is on the ball, though and has recommended he be statemented and provided a detailed and comprehensive list of the support he needs once he starts reception class in September. CAMHS had disappeared off the face of the earth, mind. We live on an ever changing boundary between two halves of a large county and we got transferred to this bunch post diagnosis. After one pointless meeting with them, we never heard from them again.

DS2 started on the evaluation trail in February and Portage have already been out to see us and say they will be visiting weekly pretty shortly.

We're in County Durham.

Jenkeywoo, DS2 looks like he might miss the boat for early nursery, which is one place that we loose out in our postcode lottery. Our school has been running one of the Surestart trial 2 year old schemes, but it looks like it won't be happening, next year. We live in the middle of nowhere and I don't drive and I'm constrained by DS1's nursery hours, so we have no other options. The only age suitable playgroup at the Surestart is messy play, which is totally developmentally inappropriate for DS2.

Our developmental paed said she could only get the ed psych on board if we could find him a nursery place for 2 year olds (he's 2 next month). We're a bit stuffed in that sense for another year, I think.

Access to therapies and services seem to have improved quite a bit around here since ds1 (now 7) was first referred into the system. Ds2 (5) was offered a lot more help and much faster than ds1.

Ds1 had to wait for a year for actual SALT to start, despite having little or no language. There was a 6mth wait for a SALT assessment and then another 6mths for the actual therapy. Ds2 started talking a year earlier than his brother but started getting SALT just one month after he had a multi-disciplinary assessment. Both had 1 session a month.

There is only a 3mth waiting list for an initial appointment with the Paed, and the multi-disciplinary assessment is 3mths after that.

Both boys got portage within a few weeks of it being requested and for 1hr every 2 weeks.

Ds2 had weekly OT sessions for a few months. Ds1 was never offered any.

We were offered sessions at a special nursery for ds2 but in the end opted for m/s. Ds1 wasn't offered this.

Ds2 saw the Ed.Psych at his pre-school. Ds1 didn't.

Ds1 sees the Paed once a year but we have the option to phone if there are any problems between appointments. Ds2 used to see the Paed twice a year but now that he is a little more settled he too sees him once a year.

I think we've been pretty lucky compared to others. The waiting lists in some other areas seem huge in comparison.

DS1 (AS / HFA) has had no therapy ever except for what we have arranged privately. He has severe behavioural issues, SPD and dyslexia in addition to the normal spectrum stuff. He iss tatemented.

DS3 is more severe- very poor language skills in addition to his other issues, he has had some OT but really just a photocopy of things for us to try like massage that we already do; he is meant to have SALT but every time he gets assessment in place his therapist leaves and we start agin- he currently has ahd 2 visits ats chool and his 1-1 does some therapy as a result, but as parents we have had no therapy input whatsoever.

We can't even get free nappies (he's doubly incontinent, will be 5 in the summer) at the moment- dreading what happens when he grows out of the last supermarket size! Having big issues with leaks atm.

It's rubbish in Liverpool. no portage. hard to get referrals for SALT before 3. 8 months wait for initial assessment for SALT. 13 months wait for joint clinic appointment. If Liverpool has any CDCs, noone has ever bothered telling me!! Apparently in 4-6 weeks after a meeting DS will get weekly SALT at his nursery . Had no help with DS school choices/nursery whatsover - when I phoned up early years I was told 1)we can't give you any help before he is seen by joint clinic and referred to pre-school panel and 2)all m/s schools deal with all SN, so can't recommend any schools that are good with kids with SN.

Allegedly more pre-school SALT have just been recruited, so things should improve.

I tried to get DS onto the 2 year old nursery pilot because of his speech problems but complacent cow of a HV thought I was just being neurotic being worried about his speech- she told me "oh there are criteria for getting a place for that" - and couldn't even be arsed to tell me what the criteria were .

On the whole pretty good here, except SALT which has been crap.
Physio, automatic referral at birth & the first 3 yrs had excellent service fro the community physio. Then restructuring & its been a bit hit & miss since but they are always available on the phone if needed.
OT Initial wait for assessment was several months but once accepted on to their caseload the service has been fantastic, regular assessments, weekly OT pre school group, regular OT visits to m/s nursery & m/s primary. He has always had the same OT, consistency makes all the difference.
Community paed - Brilliant, again always only a phone call away & very supportive.
Orthotics, initial wait was several months but physio managed to slip us in to one of her joint physio/orthotics clinics & no problems since.
Hydro/pre school sn swimming at local sn school arranged by physio, great!
SN school outreach support very good.
Psych, OK home visits followed by clinic & multi discipline weekly clinic, not much actual advice as trying to label rather than help.
Wheelchair services, great NO waiting list!
SALT - Crap, first assessment followed up by one visit to pre school & gave SENCO some exercises, 6 monthly reviews but not seen anyone for over 12 months due to SALT sickness & cancelled appointments.

We are in Suffolk btw.

to be fair - opthalmology and audiology were reasonably good - only 3 month wait. And after DS appointment on Thursday, was told I could come in Monday morning for him to have blood tests.

Oh yes forgot those, opthalmology great, discharged at 2yrs.
Audiology ok!

I used to think our local services weren't very good, but now know that they are probably about average. We are in Coventry.
Wheelchair services - very efficient when we got there, but dd waited about 3 months to be assessed.
Orthotics/surgical appliances - dire to begin with, but seem to be getting better. Only waited about 6 weeks for dd's Piedro's and insoles this time, compared with about 4 months last time.
Physio - brilliant, very helpful. Thanks to the physio recognising her need, Dd "may" get a grant for a special trike But we only see them once/twice a year. We were only seen again so soon because the school service here is massively overstretched, so the physio that saw dd before she started school saw her to see how she's doing.
Orthopaedics - Hmm. Dd's having lots of problems that weren't picked up at her last appointment, and the GP thinks she should be seen earlier than was originally decided. This is difficult, as all the clinics are full, and thanks to the new booking centre system they are only allowed to book appointments so far ahead now (!)
By the time they've sorted it out, it'll be September anyway, when she was originally due to be followed up.