What is physio provision in your area like for adults with Cerebral Palsy?

[rcwallace21]

[niceboots Volunteer]

I find physio provision for adults in my area really bad.

Unfortunatley I have found you have to fight to get a refferal to a nuero physio - then you only get 5 sessions and left to get on with it.....

[rcwallace21 Administrator]

Physio provision is nil in my area. I pay to see a private physio every month. I'll get NHS provision after operations etc. But nothing after that it's annoying! I think it needs to be looked at.

[niceboots Volunteer in reply to rcwallace21]

I totally agree it needs to be looked at..... I got more hydro sessions than physio.

I now pay for private hydro self help sessions and carry on with the exercises I have pretty much always done, would be handy to have six monthly check ups at the very least

[hdines Volunteer]

I get physio if I actively arrange appointments with the NHS physio department in Glasgow or Dundee but the only physio which has really helped since I became a teenager is specialist (but free) physio from Bobath Scotland.

[Wheelygiril]

Crap

[mollymoobarnes]

As a mum of a little one with CP I find this all really worrying. How come kids get physio on the NHS and then it's just withdrawn as soon as you turn 16? It's just as important for you adults as it is the kids isn't it? It's preventative too - if you exercise your muscles and work hard at getting them strong and less tight then you are less likely to get deformities and contractures which then need operating on, costing the NHS money for surgery and post-surgery care and rehab. It's so short-sighted of the Government. Having said all of this, even as a child with quad CP he's only getting physio once every 3-4 weeks and we are already doing 9 hours of conductive Education a week off our own backs and intensive private Bobath physio for an hour a day one week in every other month, at great cost.

[niceboots Volunteer in reply to mollymoobarnes]

my goodness! I cannot believe that your little one is only getting physio once every 3-4 weeks.... When I was young I had physio once a week at the child development centre, then at nursery twice a week, then when I went to school I had physio by the nurse once a day and a visit from the physio once a week.....

I think it's terrible that as they make cut backs, they seem to be doing it in all the wrong places.

[mollymoobarnes]

It's just rubbish isn't it? He needs stretching every day and he needs to be challenged to keep trying new stuff to increase his core strength and keep him moving forward with his learning but I think the expectation from NHS physio is that it's the parents job to do all of that and they're just there to steer the parents in the right direction. I have 3 year old twins and a 5 year old so with the best will in the world I'm never going to get the time to do enough physio with Tom at home - one slip of concentration from me and he could fall off his physio ball or his legs could give and he could smack his head on the floor. Besides, a lot of physio work needs 2 people, one to help with his arms and one to help with his legs. Worse still is that when he does get an NHS physio appointment, it's a joint appointment with OT so of the 40 minutes he gets, only 20 minutes is physio and 20 mins is OT. I just want the best for him - the implications of not enough physio at this age are lifelong - he deserves better. That's why I drive all over the county doing conductive education with him so that he gets plenty of exercise and keeps practicing his skills. Not every young child with CP in West Sussex has parents willing to do this or that even know that what they are getting from the NHS is not adequate for their child.

[rcwallace21 Administrator in reply to mollymoobarnes]

Got to say. I'm really surprised at the lack of NHS support your son is getting. In Tayside the paediatric service is really good. There is just a lack of support for adults. I'm lucky that the physio that I see privately has lots of CP experience from children ,teenage right through to adult. But I agree, if you keep on top of CP in the short term it will save money in the long term.

[niceboots Volunteer]

I don't think they realise how much time physio takes up to be beneficial... And it is a nightmare trying to squeeze it into a busy family life....

I was lucky growing up that family had horses so that was a brilliant form of physio. And I grew up in the countryside (also in west sussex!) so I had alot

As far as Im aware when I was little, there was not very much info available about other therapies except physio on the NHS....

[mollymoobarnes]

I've heard that riding is REALLY brilliant for core strength and stability - I've contacted the local 'riding for the disabled' group and they said he needs to be 4 before he can start - does that sound right? I know he'll love it and it'll be really good for him. Conductive education has been really really great for Tom - its so active and so far removed from the NHS approach of supportive seating, straps and buckles and being wheeled about in equipment etc. In Conductive Education we use low slatted stools where his feet are on the floor and his knees are at 90 to his ankles and then he needs to use his long arms to prop himself up and his core muscles to keep himself in the middle. We practice holding on with one hand while reaching for bubbles with the other without falling over, we practice staying stable whilst pretending to sneeze (and that's hard for Tom!) We do walking whilst holding onto a simple push-along walker so he can learn to shift his weight when he walks, lift his feet etc. We try holding a crawling position, we've learned to roll across the room. We do NONE of that in his NHS physio. I've got a 'Team Around The child' meeting in July and I think all I can do is raise my concerns and push for what Tom needs.

[niceboots Volunteer in reply to mollymoobarnes]

Riding is fantastic fore core strength, stability and balance, also the movements of the horse helps work and stretch hip muscles that can be really hard to do with physio. It also helps with losening up the trunk and there are exercises you can do sat on a horse to help stretch and work different muscle groups. Overall a fantastic form of physio that doesn't really seem like physio as it's alot more fun than being stuck on a mat being pulled about!!

Not sure about RDA as I rode with riding instructors that we knew. There are alot of riding centres around though that can cater for people with disabilities.

[jackie6]

Hi rcwallace21

I have mild CP on the right side and my leg is the most affected. It's very very poor here! I've only ever seen a neuro physio once and it wasn't wholly in relation with my CP either. I fell about 25 years ago when on holiday abroad and didn't do anything about it until I came home (was scared of foreign hospitals back then). I was near enough out of action completely, it was a nightmare. 6 years, excruciating pain and persistence later found out I had broken my sacrum😪💗 So I'm left with terrible bad flare ups of hardly being able to do anything really and that's where she fitted in. She helped to a degree, but a very small one at that🔎 I feel the other physios I've had and my regular GP don't understand - they treat me and my body as if I'm able bodied. Don't get me wrong I have slight CP, but I still have issues and barriers, which I'm finding are gradually getting worse in the last 3 odd years.....I'm definitely better talking to a brick wall me thinks🙈🙉🙊 See if it's better this time round at hospital in a couple of weeks time!?😕