If your child has additional needs (particularly a diagnosis of CP) and you have access to good NHS therapies, please tell me where you live!

[inhibernation]

My dd is seen about 4 times a year by Physio. The referrals to specialist hospitals can take up to a year. It is depressing. Interested to hear what services are like where you live - it's not the kind of thing one can easily research. TIA

I'm in the SW and it seems similar in this area to what you are experiencing.

Physio/OT and Speech and language therapy are the hardest services to access because of huge waiting lists.

Even though we are in the system and have been for some time, we still receive input from each service maybe once or twice a year.

The therapy DS receives consists of me being sent photo copied exercise/activity sheets after his assessments telling me what i need to do with him until i see them again the following year

We've been very lucky. We are in the care of Chelsea Westminster Hospital - when we began there 16 years ago it was known at the Cheyne Centre. Cheyne had been located at Cheyne Walk in Chelsea and was brought to the hospital sometime after the Chelsea Westminster was built on the site of St. Stephen's hospital. The present administrator, Heather Lawrence, (soon to leave) waged war on the Cheyne Centre for years trying to get it closed because it was too expensive to run in her view. They stopped allowing new referrals and then used the lack of children as their reason to shut it. Stalinesque in reasoning and action. Nonetheless, Cheyne had a tradition of excellence, and even in the face of administrative undermining, they never lost that tradition.The Paediatric Physiotherapy team is outstanding. The support they arrange and deliver has been of the highest quality. The orthopaedic surgeons are highly skilled and warm reassuring personalities. They used to have quite brilliant paediatric consultant neurologists - Dr. Cavanagh has retired from NHS work and Dr. Kamath Tullar is now at the Edibnburgh Hospital for Sick Children. If you are near to Edinburgh Dr. Tallur is your man - he is a wonderful doctor. I cannot pass a view on the current paediatric neurolgist save to say that they should have moved heaven and earth to keep Dr. Tallur - Chel/West's loss is Edinburgh's gain. As for appliances - we've been through many different orthodic makers over the years - some good - others awful. The chap Chel/West have now "Stephen" who runs a company from Lewes called John Florence is the best we have ever known. By some distance. He never misses. No refits - One and done. His only real problem is he's an Arsenal fan. In terms of other appliances - we never were short of what we needed but equally we bought privately standing frames, Kaye walkers and trikes and passed them on to other children at the Cheyne when my DS outgrew them. Our physio made us a wedge for long sitting and we made our own corner seat. There was the insane issue of not being able to use the hospital as a clearing for old appliances because of Health and Safety and I have always been horrified by the amount of gear in closets not being used because the Hospital didn't want to assume liability so they wouldn't allow the physios to pass the gear on. I hope that has been solved by now! (but I doubt it!!)

The community Physio team is terrific. They cope, like many do, with changing personnel due to maternity leave but they schedule and work in blocks of time to try and move their patients forward - allowing parents/carers to consolidate the progress afterward. OT has always been a problem - There are not enough in the world it seems! We gave up and paid for a private OT - this was short lived because they moved. We've tried to do a lot of the OT work ourselves and our Physio also helped in this area. I should add that we used a private Physio to supplement the NHS physio initially and after surgery. Luckily they all knew each other and were able to coordinate the programmes of exercise between themselves.

When I read the experience of others I know we've been lucky but I also have seen the assault on services bite in areas where they can have the most positive impact - this must be penny wise pound foolish policy as early intervention seems to have great long term benefit. (sorry this is so long!)

I'm also in the SW and have been really impressed with the service here compared to my experience in the SE. DS1 saw physio monthly for 6 months now it's more like ever other month or every 3 months. SALT has been to see him around 4/5 times in 9 months. DS1 has global development delay of unknown cause. In the SE we waited 15 months for an appointment with SALT.

I think you know I am generally impressed. I am in East Anglia (addenbrokes in Cambridge) and the physion has progressed all the other referrals we need for ot, orthotics etc. We see a paed about 4 times a year, physio between weekly and monthly and she also goes inot nursery, she helped sort out early years funding for DS, and we also have great respitory care witha dedicated respitory paed and asthma nurse. Also at Addenbrokes, and they all talk to each other and us

also in East Anglia, Suffolk. NHS services from Ipswich hospital have been fantastic from birth ( ds2 is 9 now).
He has CP & autism. Pre school CDC was great, communtiy physios lovley & proactive. Our community paed is brilliant, always happy to be at the end of a phone if needed in between appnts.
Orthotics clinics have been flexible & quick.
NO WAIT for wheelchair services
NHS & LEA linking & cross communication has been great CDC working with SN school outreach & supporting MS nursery
Statment process was quick & easy & the LEA officer is very helpful if a little hard to get hold of.

The only thing lacking ahs been SALT but i think thats a national problem.

This is great. Thanks So East Anglia gets the thumbs up then!

I have found The Norfolk and Norwich brilliant LEA very helpful SS a bit iffy.

Ah yes - good NHS and SS........too great a wish list eh!

I typed the longest reply and mn ate it.

Just marking place to remind me when I have more time...

Hate it when that happens!

We live in East Yorkshire and have everything we need pretty much on tap - in fact it's probably too much but I can't complain! We have a list of professionals who are a phone call away and who see our son now and again, but they are all there and waiting if we need them - physics, OT, 2xSaLTs, Portage, groups galore, visual impaired service ( even though our son isn't visually impaired but to make sure he gets the right things he needs at school (he's under 2!). After fighting for years in Surrey to get services for other children, it's like a breath of fresh air here :)

Physio lol.
Just to add if I need an appointment for anything I just phone up and the appointment book gets brought out and booked!

Was in tears this evening about the complete lack of any therapy and services for my 19m dd, brain injury caused at the Norfolk and Norwich, massive brain damage. Physio seen maybe every three months, but not since Autumn last year. OT seen once despite real need around 9 months, hospital paed brilliant but about to transfer to community.

We get all our support through nursery and a very proactive team. The 'therapy photocopies are few and far between, we were promised hydro last year but never got it. We are totally off radar now and in fact attend Brainwave next week to try and get some handle on how to best support dd.

Most days I can cope but DH shouting at a screaming dd who was woken by a dog barking has made me downright miserable!

Slowburner, our community paed has had the biggest influence on ds2's progress. SHe really kicks butt & gets him the therapy he needs. Hopefully your community paed will be effective.

For Hydro, DS2 went to the local SN schoo (Ipswic)l, they had a pre school outreach/community programme.
It may be worth contacting your local SN schools to see if they have any similar programmes, their pools are often not as booked up as NHS hydro sessions.

Slowburner that's terrible Are you considering legal action? The frustrating thing is that we are all told how important early intervention is, yet actions don't even remotely correspond with words.

slowburner we are in Norfolk too. We get monthly therapy sessions from CDU with physio, OT & SALT at a kind of speed dating IYSWIM. Our community paed is excellent at the moment pushing for statementing: dd 2.2 with ds. Portage, Sensory Support & Advisory Teacher all really supportive.

Our nursery have in fact been slow and want to see how staff cope . But paed has said not acceptable so things are moving now.

quirkychick like you I find Norfolk brilliant DC's at SS where they get very regular physio OT support & SALT. DS is also has a cochlea implant (Manchester) and HI teachers fully supportive and also VI input excellent.
Wouldn't live anywhere else!

We were told over and over again that DD would have movement issues, and she has, some days worse than others however it is evident when watching her she doesn't have the fluidity of movement we take for granted. It's like she is always holding herself rigid in order to move. Because she can walk though, and feed herself then we've been told she is managing. I am very interestd in the Brainwave assessment next week, I am sure DD has some weak tone in her trunk.

Perhaps transfer to community will be a fresh start, I don't think I could look our ex physio in the face again so maybe we can ask for a different one. We have simply been written off, have always had to struggle to get any support, even though a little goes a long way with DD, we are very very lucky that her nursery have pulled out all the stops and she gets a lot of stimulation from the other children.

dd has spastic diplegia - moderately affected. She is 2 years old. I cannot fathom how any health authority can think it is ok to see a child like her once every 3 months.

right. blardy ipad discharged when i was half way through my flipping post again. if this one doesn't work i'm going to do it line by line and fill up the thread

right.

renfrewshire - (apart from the fact they broke her in the first place )
discharged from scbu with full physio and slt (feeding specialist) twice weekly at home. portage, and then a nursery place from 1st birthday for two mornings a week because of her needs. feeding and communication group run by slt and play specialist weekly from 6 months. slt kept me sane. spec optometry and orthoptist at hosp from 3 mos. spec seating, standing and walking frame provided through physio. piedro boots.

wilts/oxon border - we chose to use oxon for services.

ft nursery (at 2) with one day a week at special school (ormerod, which may have closed now?) and slt, ot, and physio sesions at the ss. access to hydro pool at ss weekly. oxford eye hosp for optometry and opthalmology. gaiters etc ordered and issued through ss. self purchased chair for nursery because of frequent moves, but ot advised. lea provided funding for 1-1 from 2yo. piedro boots.

hampshire

the most fantastic ot and physio - sometimes weekly joint sessions in clinic, in 8 week blocks, usually month or so between. slt same, but changed to phonology group slt from school start. ot, physio slt happily went into nursery to advise 1-1, and also for iep target setting. ep assessment. area inco frequent visitor to nursery. statemented for yr r with continued 1-1. wheelchair, dining chair, upgrade to r82 croc from kaye walker, lycra suits - all provided with no hassle via ot. best orthotist we have ever had, piedro boots. paed not up to much. frimley park for eye hospital, opth and optometry. all good. we were even asked to star in the dvd about the new pct and health centre . dd2 thought it was brill. me, not so much.

canada is a whole other ball game! (the child has afo's for the first time at 8!)

in all seriousness, we've been really lucky with the supports for dd2. everyone has been v willing to do their utmost to support her in whatever way they can. she's had a couple of years of patchy services in school, but great therapy out of school here, and now that we have moved she has come onto the radar and the new school are playing catch up.