NHS Physio - am I expecting too much?

[Jenkeywoo]

I think I must be way off the mark as I expected the NHS physio to be a)regular b)useful.

dd diagnosed with mild hemiplegia (cP affecting her right side) at end of April. She's 15 months and unable to do anything other than sit at the moment. On diagnosis we were promised physio and they also talked about helping to to crawl, walk etc. We waited a month and were told there was no physio available but did have one cancellation appointment with the senior physio - at this appointment she showed me several good exercises for dd and also worked well with her. She also fitted her for orthotics - although by fitted I mean that she did not measure dd's foot, basically got some orthotics ordered for another child, held them up to dd's foot and declared 'she needs the next size up'.

We then waited another month for the new physio to start work - we saw her last week. She is obviously new to the profession , which is ok, we all have to start somewhere. she got out the now arrived orthotics and put them up to dd's feet - dd's toes were hanging over the edge and they were obviously too small but if I hadn't pointed that out we would have come home with them and dd's little foot would have been squashed up.

Last week dd was very distressed in physio and she didn't do much as she said it was useful to let dd get used to her. When I arrived yesterday I found that she had double booked us with another little girl so we both had only 30 mins. DD cried the whole time and the physio did literally nothing at all this time. I suggested that dd was going to cry anyway so why not at least try to show me some physio exercises that we could do at home but she seemed freaked out by DD's crying. She even suggested to me that if I left dd to cry more at home and did not pick her up every time then she'd be better at physio! . You try having a very frustrated 15 month old with CP who is mighty pissed off that she cannot run around with her big sister - of course she cries!

Anyway, I left yesterday with no future appointment - she reckons she is going to try to arrange a home visit but it could be some weeks away. No idea what we are trying to achieve here with physio, no real idea what we should be doing at home, and of course no orthotics which we're still waiting for and dd desperately needs.

So I'm afraid that we're having to look at private physio I think as I cannot sit back and see my dd missing out on the help she needs at such a crucial time in her development.

Is this a similar picture of physio elsewhere or have we been unlucky here? just feeling a bit let down really as at diagnosis they seemed to promise all this help and it's just not happening.

We were advised that physio might be helpful for my dd because she is extrememly hypermobile, and has low muscle tone (think of how a newborn foal walks, all wobbly. Dd is like that at 4). We saw the physio twice in 6 months, although at least we were shown exercises to do at the last appointment. I am just at why it took so long for them to refer our dd's when they KNOW there's a problem that isn't just going to go away

My main bugbear was with orthotics, as they ordered boots that were meant to be "in stock", and be with us within a week. It took about 3 months, and dd had several bad falls in the time she was waiting
I am sure that they gave her a truly massive size to try to make them last longer too... she has had them for 6 months already, and the physio said that they still fit OK.

I know the NHS is strapped for cash, but not everyone has the option of going private for essential treatment like this. I would go private too, if I could.

You're not expecting too much, it is perfectly reasonable to expect a decent service. Unfortunately as for OT & SALT as well the NHS service is practically non existent and next to useless. As far as I can tell these services only really exist in special schools now. Elsewhere? forget it.

We went private for OT.

of course the irony is that the physios, SALTS and OT's coming out of training now can't get jobs- the NHS trusts aren't funding posts. At least there will be lots of private ones to choose from I guess Do write to your MP and complain. It won't make any difference to your case unfortunately but if enough people bang on about it it might make it into the radar.

sorry we went private for SALT- we actually did get NHS OT (2 year wait, 1 appointment every 6 months, but it wasn't urgent).

Hi, Its a real pain isn't it, sympathies xx

We had concerns about our DD2, late crawler and still not bearing weight on legs at 16months. Took her to GP early May and he shared our concerns and said her "feet turn outwards, and would benefit from physio", he refered her to our local NHS physio, still no news on her referral, she is now nearly 18 months and still the same. I rang round some private physios all of whom were reluctant to look at a baby (needs a specially trained infant physio). Phoned the physio dept yesterday and they said it would be a ten week wait from now. Very fed up and worried that without the treatment the problem maybe harder to rectify in the long term.

I hope your DC get the treatment they need soon

Thanks for your messages, I'm sorry that the situation seems the same or in fact worse around the country. I must have rose-tinted glasses because I expect the NHS to be a bit pants for adults but somehow imagined children were prioritised and got what they needed. (alas my poor old grandad is waiting for his cataract op so it's the same for young and old). Anyway, I have to say that my daily telephone badgering obviosly paid off as the physio is coming to our house next week! I'm starting to learn that she who makes the biggest fuss gets seen but it shouldn't be that way, should it?

Hello

Where abouts in the country are you? Are you near any conductive education facility?

My dd goes to parent and child sessions twice a week (term time). It is funded by private company and is open to children under 4 with motor skills problems (CP being the most common they see). I completed referral myself - gp had to fill in a bit.

Its not for everyone - but my experience with dd has been fantastic. I'd also recommend the movement centre www.the-movement-centre.co.uk/ They have centres in Oswestry and Newcastle. My dd has standing equipment from there and has been doing targeted training for about 3 months. Again, it is making a vast difference. The funding for this was all sorted out with our application - we don't pay anything.

I hate to agree with you re the lack of NHS physio. I don't think dd would be even putting her feet on the ground if it were not for the involvement of these other places.

All the best x Oh and feel free to ask me if you are interested and would like any more info on either of these

Thanks anniemac, I haven't heard of brainwave so will have a look.

My dd was referred for physio thats she's supposed to have for the rest of her life when she was 6 onths old. The first two years were great, had a fab physio who was based at the hospital, saw her every two months and she gave us a load of exercises to do with her, went throug them all showed us how to do them explained what they were for etc.
ut after that we were moved out to physio in the community. DD is now 6.4 and we've seen a physio since then aroud 4 or 5 times.
She's now in an inclusive school, they have a physio room an physio based there but end of last year physio left and there hasn't been a replacement yet
NHS can be truly crap.