Why do less adults use orthoses than children?

lucybest

Hi, I am an orthotist and I would like to ask the community about the use of AFOs, night bracing and other orthotic devices in adults with cerebral palsy. In orthotic clinics we see far more children  than adults and it is a much greater difference than you would expect because children need replacement of devices more frequently due to growth. This means that a lot of people with CP no longer wear their AFOs, DAFOs or other equipment. If you have had orthotic devices as a child and no longer do, I would be very grateful to hear why you stopped (and would you have stopped earlier if not prevented to do so by adults) . Or if you had AFOs and now wear something less controllable I would be interested to hear your reasons for that too. I am not posting this for business purposes but because I want to understand the needs of the patients I treat better. Many thanks

Stayce

Hi @lucybest

Interesting post -  I don't fit the demographic you describe there at all - just thought you might find that useful. I wore no orthotic devices as a child and now as an adult wear several orthotic devices which I find extremely helpful.

There are also many on this community that could possibly comment on this.

I think you probably see far less adults in your orthotic clinic largely due to there being no NICE guidance currently for people with CP over the age of 25 ( NICE guidance for over 25 with CP is not due to be published until 2019).

Thus everything an adult with CP does get access to is quite a struggle/ fight to get. In orthotic terms for an adult with CP it can take a very long time to get the 'right' orthotic for the user  due to pain/ discomfort that some of these devices can cause. In my experience it requires an orthotist who really has patience and understands what putting a limb in its "supposed" optimal position can do to high muscle tone - this is why some will wear something less controllable.

Just my thoughts 

Hope it helps

Best

BeccyJ

@lucybest

I wore night splints as a child but, like @Stayce says, it's a real fight to get any kind of help in adulthood.  The message I got was that once I stopped growing there would be little that could be done to help me.  I was discharged from paediatrics as a teenager and left to get on with it.

My mobility has deteriorated significantly since my mid 20s and I had to fight to get any kind of help.  What I did get was minimal and I ended up going from being an independent walker to a wheelchair user.

I remember asking about orthotics and whether they would be any help to me in improving my mobility but I was told that orthotics weren't suitable for adults with CP - so I'm really interested to read this post.  It really shows how important it is for some kind of standard guidance to be developed.  I'll be interested to read the upcoming NICE guidance.

@Stayce

Do you have any suggestions based on your experience of orthotics please?  Who have you seen and what has helped?  Thanks!!

BeccyJ

@Stayce thanks for the link to the NICE guidance.  Is there anyone you can recommend who has helped you with suitable orthotics?  Have you found it has made a difference to your mobility?

thanks so much!

lucybest

Thanks Stayce and BeccyJ.  As you know, CP has many forms in terms of severity and in terms of the way it effects different people. Even in the paediatric field where there is a high number of CP children, there is very little high quality research to determine which orthotic treatment for the lower limbs is best (including jointed AFOs, solid AFOs, DAFOs, lycra) . With adults, the range of abilities, tone, joint contractures is even more diverse, so there is even less research on this. The options in orthotics include: AFOs (jointed,  rigid, polypropylene, carbon), DAFOs (ankle braces rigid  or jointed), moulded insoles, custom or semi custom footwear, lycra garments, functional electrical stimulation, spinal jackets, knee braces, KAFOs (knee ankle foot orthoses), contracture reduction braces, wrist hand orthoses (rigid, soft), elbow braces (rigid, soft). There is lots of information now on the internet. If you think something is going to help you, then I suggest you ask your GP to refer you to your local NHS orthotic department and you discuss it with the orthotist there (bring a picture of what you want). If they say no, but you still think it will work, then the next option is to get it privately and if you find it works, then go back to your GP to show him/her and ask for a letter to request it. That is what a few patients have done with me. Hope this helps you  to be more mobile/sit up straighter/make life easier!
 

niceboots

Hi @lucybest I have cp and am in my early 30s. I didn't access any services physio or orthotics after being discharged from paediatric services at 18, I was effectively waved off by consultants, physio and orthotics with the cheery statement 'you're very good at self managing your condition, carry on as you are'. I was given the contact details of the local adult orthotics service, but no advice on how to access it. Then at the age of 23-24 I found my mobility was getting more difficult, and I was getting tighter so I went to my gp and requested a referral to physio and orthotics, I got the referral to a physio (who as a msk and sports physio had virtually no experience with cp) but no referral to orthotics! Luckily the physio I saw respected that I know my condition inside out and wrote to my gp stating that I'd really benefit from the multidisciplinary input from both neurophysio and orthotics-precisely what I'd requested in the first place! 
I think that part of the problem with adults with cp accessing orthotics is the lack of understanding of adult cp by gps and the lack of communication between services, when I was a child, my physio and consultant coordinated with orthotics, and I saw a physio almost weekly when I was school age, so any changes/problems were dealt with by her.
Luckily I now have relatively easy access to orthotics as my gp understands that I know my condition and refers me without me even seeing him, I just phone up with a referral request and it gets signed! I now wear an afo on my more affected side and a dafo on my less affected. I also have a leg gaiter and night splints to give me a good stretch out when I need it.
 I had an orthotics review yesterday and the orthotist I saw was saying that there's a fine line between getting the right amount of support, whilst not limiting function. So getting the right orthosis can be trial and error especially for adults with cp, where energy usage and fatigue can be a major issue. 

lucybest

Hi @niceboots. I am very glad that you now have access to the orthotics dept and can get a range of devices to suit you. This is how it should be for everyone. You shouldn't have to fight for it. You should be allowed to trial various options because without doing so you won't know what will suit you best. Are you involved in the adult CP NICE guidelines? There will be a users group who can comment/advise.

BeccyJ

Hi @lucybest

Do you know anything more about the NICE guidance please?  How can we get involved in the user groups?  

Thanks

Stayce

Hi @BeccyJ

Apologies missed your question - I would personally recommend looking into Lycra splinting as an option to look into (they don't suit everyone, but I have found them beneficial to mobility related issues and pain) - Perhaps Lycra leggings or socks and shorts might help?

See links below

https://www.dmorthotics.com/medical/products/

There are several companies in the U.K. which provide these garments,  DMO being one of them - You can get these on the NHS I would suggest giving DMO a call and asking which NHS hospitals they serve that are nearest to you and then you can ask your GP to refer you to the hospital nearest to you that offers Lycra splinting.

Let us know how you get on 

Hope this helps
Best

HeatherM

Just came across this post after searching re Splits orthotics and Adult cp I have (spastic diplegia) just started using 2 splints that were made for me by NHS orthotists in Glasgow.  I've also had botox.  I've really struggled one foot feels fine while the other feels totally wrong but I am working on using them 3-5 hours at work, at first I couldn't imagine wearing them all the time getting used to them now though.  Also working with a physiotherapist to improve walking with crutches. I find it difficult to put them on by myself, and then put on shoes any helpful tips

niceboots

Hi @HeatherM I can sometimes struggle to get my splints on, particularly when I’m having a ‘bad cp day’, some ways I’ve found easier are to put them on whilst sat on my bed, I put one foot up on the bed so it’s out in front of me, so I’m not bending down, which I find hard. It really helps me get the right position in the splint, as my knee is bent, making it easier to get my foot into the correct position for the splint. I also use a shoe horn to help get them in my shoes easier and it stops the backs of my shoes getting pushed down an wrecked. I really struggle when I can’t find somewhere to get my feet up to a better angle for me. I often find it hard at a friends house, but luckily she’ll put them on for me. 

HeatherM

Thanks Niceboots i’ll try your suggestions definitely getting easier to put on although some days harder than others and it feels great taking them off!

lucybest

There is a new strap now with a magnetic BOA fastener "quick fit buckle" https://clickmedical.co/quickfit-strap-and-buckle/
I fit these now to AFOs and KAFOs and it is great for people with weak hand strength. 
You can also get shoes with  a boa fastener at the back to make it easy to get into the shoes https://tomcatuk.org/twisters-online-shop/twister-boa-lacing-system/
Hope it helps!

niceboots

@lucybest that looks really helpful, I don’t have much of a problem with straps on on afo, as long as the orthotics tech leaves a little extra length in the Velcro. But that causes wear and tear on my suit trousers as the Velcro sticks to the fabric and damages it, which is a real pain as I can only wear good quality wool blend. Does such a system exist for instep straps too? 

Fraz68

I have had a similar experience to those described in the thread. I'm fifty with spastic diplegia. I had no real contact with orthotics other than custom insoles last made for me about 25 years ago. My walking deteriorated quite rapidly in the last 5 years meaning I now walk with sticks at a slow shuffle. In desperation I went to my GP to ask if there was any help at all for adults with CP who were deteriorating because it was having a serious negative impact on my mental health. I got a neurology referal, and then subsequently a onward referal to a specialist neuro orthotist. The result was that I got a custom made AFO for my left leg that has transformed my power on that side. I'm going back to be cast for my right side soon (more complicated requiring a KAFO probably). It seems everything is going in the right direction now, but it took a lot of questioning on my part to get here, and you certainly fall off the NHS radar as an adult with mild CP. There doesn't seem to be a recognition that although the original brain injury is non-progressive, the issue of living long term with altered gait biomechanics does result in a progression of increased pain, stiffness, and reduced physical capacity.

lucybest

Hi everyone, I hope you all had a decent Christmas despite COVID and have been staying healthy. Little tip for Velcro catching on your woolblend trousers Niceboots -  ask that next time the Velcro is put on, it is done so that the hooked side faces towards the AFO when it is fastened and that the tab at the end is free of the hooked velcro.
Lucy

lucybest

Thank you to all of you who have shared their adult orthotic experience in this thread. The NICE guidelines for adults with CP is now published,  https://www.nice.org.uk/guidance/NG119. but there is very little on orthotics because of the lack of scientific studies to show it is effective for adults with CP. It does however, recommend that regular reviews are offered and tailored to needs and preferences of the adult with CP, so if you would like to be reviewed by your local orthotic department that should not be a fight now (for those of you who said it was).

If anyone would like to add their adult orthotic experiences or needs, I would be very interested to read them.
The reason I am asking is because I am an orthotist and when I worked in the NHS, I used to see lots of children with CP but very few adults. I now write reports where I  cost up the lifetime orthotic requirement of children with CP, so any information you could share  (as adults with CP) would be very helpful - e.g how your needs have changed, what you had as a child and continue to find useful, what you didn't have but would now be helpful, what you had but no longer need and why, whether  finding footwear a problem etc.

Please could I ask if any of you (as adults or children with CP) have tried the relatively recent new devices:

1) Mollii suit  https://www.remotion.co.uk/
2) Hart walker http://hartwalkeruk.com/

Also, does anyone (as an adult with CP) continue to use a standing frame, if they had one as a child? 

How about lycra garments?

Does anyone who relies on moulded seating within a wheelchair for postural control, also use a spinal jacket with lockable hip joints and thigh cuffs, so that they can have similar postural control outside the wheelchair? If not, would this be useful?

Thank you in advance.

 

niceboots

lucybest said:

Hi everyone, I hope you all had a decent Christmas despite COVID and have been staying healthy. Little tip for Velcro catching on your woolblend trousers Niceboots -  ask that next time the Velcro is put on, it is done so that the hooked side faces towards the AFO when it is fastened and that the tab at the end is free of the hooked velcro.
Lucy

Hi Lucy, thanks for the info. Luckily I got new splints earlier this year and they did exactly that for me!
If you use Facebook, there’s a group called orthotics in the uk support group that could help with the questions you have.

Doxa

I am an 48 year old with CP. Paraplegic. I have frustrating experience with both orthotic & neuro physio. I have excruciating pain in one of my hip join. I am not able to get the help I need. My mobility is terribly affected. Any suggestions I try to bring to these specialists are mostly disregarded as they bring their theory & experience into the consultation. They might not know that CP affects people differently & it’s the person affected that knows their body better. When I tried to explain to an Othotics specialist the callipers I felt will be beneficial to me they were offended & as they said they knew better what will be good for me from books & experience with CP patients. THANK YOU to the person that talked about a specialist neuro orthotist. I will ask for that referral.