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Lycra Splints for people with cerebral palsy

Hi,
I was wondering if anyone could tell me whether you have to pay for new lycra splints? I'm 24 and when I'm 25 I will be discharged from the place that currently provide my lycra splints.
I was told once I'm discharged I will have to go to my GP and they will refer me to orthoics if I ever need new lycra splints, but I'm not sure if you have to pay for the splints or not, and if I do how much it would cost?
Thank you for reading
Georgie
I was wondering if anyone could tell me whether you have to pay for new lycra splints? I'm 24 and when I'm 25 I will be discharged from the place that currently provide my lycra splints.
I was told once I'm discharged I will have to go to my GP and they will refer me to orthoics if I ever need new lycra splints, but I'm not sure if you have to pay for the splints or not, and if I do how much it would cost?
Thank you for reading
Georgie
Replies
We're not sure if there is a definitive answer to your question because much will depend on the local NHS Trust in your area and whether they are able to provide the funding for this. Talk to your GP and they will be able to tell you more.
Also check out http://www.secondskin.com.au/ to see if you have a clinic near you.
Hope this helps
Georgie
Please let us know how you get on with you Lycra splints, they sound really interesting. Do they correct your foot position, and improve your gait? Do they get very hot? Sorry lots of questions, I also have CP and have hinged plastic AFO's, but always looking for new lighter solutions that allow one to have normal size shoes!
Noah
I was asked to try lycra splints a few years ago because I'm able to walk normally. The problem I have is because I've walked on my toes all of my life due to CP, I struggle remembering to walk normally. Lycra splints don't stop me walking on my toes, but I find I'm able to balance a lot better with them.
They do tend to get hot in the summer, but I used to wear plastic splints as a child, and the lycra splints don't get anywhere near as hot as they used to. The lycra splints are a lot more comfortable to wear, and I don't notice I'm wearing them, and I only have to go one shoe size above my normal size.
Sorry for the long reply. I hope I managed to help
Georgie
Georgie
The likelihood is that your GP will send a letter to your local NHS hospital commissioning board requesting the item to be funded locally
I use DMO Ltd Lycra splints https://www.dmorthotics.com. Privately a Lycra sock costs around €300
Hi Noah,
I thought this maybe helpful. I am able to wear normal sized shoes with Lycra splinting. Very light weight improves sensory feedback. If choose the right colour not that hot in the summer months.
Noah
I too love my lycra splints. I would definitely encourage giving them a try. Best piece of orthotic kit I own. Having right sided Hemi I have a lycra sock and glove. Noah - I think for anyone thinking about trying lycra splints I would ask them What would you like to get out of them that you currently don't from your current splinting option? What is your sensation like in affected limbs? What is your muscle tone like?
I have reduced sensation in my right side - the lycra gives me some sensation back, and proseptive awareness of where my foot and hand are.
My muscle tone is high - with lycra splinting you can feel the muscle tone physically dropping. You also get some carry over affects once you have removed garment too.
Basically the garments are stitched in a variety of panels - panels which will reduce tone in high tone areas and other panels which will attempt to activate muscle that maybe don't work so well, providing some strength/ support
I wear a neuro template insole in my shoe as well as lycra Sock and do not need to increase my shoe size at all.
Noah if you need any further help with this or have any further questions please get in touch. Happy to help with this. I have done a lot of research on this. Hope this is helpful
Best wishes
Stayce
It all sounds most interesting and hopefully I will have the opportunity of trying some out. My muscle tone is also very high, in both my legs.
I love the idea of being able to have greater sensation in my legs, and not having to wear shoes that are 1 size to big!
Did you have to go private? or did you get them on the NHS?
Thanks also for your great comments on my other post, you really have provided us with some very valuable information, I will be adding to that post soon the things that I have also found helpful in managing my CP.
Kind regards
Noah
I got my lyrach splints through the Young Adult Team. However, next year I will have reached their age limit, so will no longer be able to see them. I asked if I would be referred to another team for over 25s, and they said there isn't one. When I stop seeing them, I don't know if I will be able to get replacement lyrach splints on the NHS or whether I will have to get them privately. I'm sorry I can't be of any help
Georgie
Noah
That's a great idea. I'm seeing the Young Adult Team for the last time in February, so I'll see if they can refer me to anyone else who can help
Thanks again
Georgie
Let us know how you get on in February.
Before your consultation it can be helpful to make a few notes, to ensure everything is covered.
Explain to your consultant what outcomes you are trying to achieve, and make it clear you need their help to reach them.
All the very best
Thanks for your help to with the lycra splints info.
Noah
Noah
Thanks again
Georgie
Noah - I get my lycra splints through the NHS. Where do you live? If you are based in London I would recommend RNOH. I travel miles too for my consultants. I am thinking of writing a Rough Guide to Orthotics in the UK
the luxury of wearing clean socks (the splints are machine washable so ideally need a spare while one dries). Both my NHS and private sock are made by DM Orthotics Ltd - they run regional clinics https://www.dmorthotics.com/services/clinics. This URL gives you details to contact a clinician direct (email or phone) I have found them to be very helpful and fair, they will tell you if they don't think something will work. Perhaps give them a call / or drop them a line, they will also be able to tell you which NHS Hospitals they serve in your region as their clinicians train NHS orthotists/ physios and OTs how to measure for the lycra splints.
Georgie - which company are your current lycra socks made by DMO or Second Skin? This maybe a way to find out where best to be referred post 25. If you know which other hospitals that will supply your current splints you can go to your GP or consultant with some options for a referral that are more likely to be what you need.
Great post everyone - lets keep on chatting great to hear from everyone
Best wishes
Stayce
I'm not sure what company make my lyrca splints, but I'm seeing the Young Adult Team for the last time in February as I'm not 25 until April, so I'll know more then
Georgie
If you are still unsure I would definitely ask the Young Adult Team when you go in February and make sure you make a note of it in case you need to talk with consultant/ GP about getting another one post 25. I find the more you know about what works for you the better equipped you can be at getting it -
- you know the old saying of "knowledge is power"
Let us know how you get on. Hope that helps
Best wishes Stayce
Most encouraging to hear that you would recommend the RNOH, as in 3 weeks time I have my first appointment with a Dr Jim Ashwoth-Beaumont at that very hospital to discuss different options for improving efficiency and reducing bulk of my hinged plastic AFO's :-)
I have also recently had a private consultation with Crispin Orthotics in Leeds to discuss them making me some Carbon Fibre AFO's, its all rather exciting, and I already have a design! Which I'm sharing with all the my consultants for their input and feedback.
Earlier today, I rang and spoke to DM orthotics, just to discuss with them what they can offer, i was very impressed, they have suggested sending them some photos of my feet so the can assess if the lyrcia solution may be suitable.
I'm also interested in some of their other products to that may help improve my bad posture that I'm working so hard on.
I agree with you that going armed with knowledge of what is available, possible and helpful to you, when attending consultations, always is a great help, it increases your chances of getting what you need, and I think the consultants enjoy working with informed patients who are trying their best to achieve more.
Thanks to you and Georgie for contributing to a most interesting discussion, and please let us know how you get on in February with your consultation.
Noah
Georgie
The NHS is great at providing what people need, yet sometimes it makes sense to go private, if that option is available, especially if it means you can achieve greater efficiency and not have to wait as long for appointments etc. I fully understand though that the luxury of going private is not available to everyone.
I wish you the very best, and I hope you get the outcome you are looking for.
Noah
If you are going to Stanmore - Do you drive? As if you don't and are going by public transport you can pick up a hospital based shuttle bus from Stanmore Underground Station that will take you to the hospital and through the grounds as the orthotic department is at the furthest possible point. There should be a timetable on the RNOH website
Glad you were impressed with DMO. If you hear back from them before you go to RNOH you could take the info with you and see if you can get them on the NHS if they think it is a suitable option, as DMO have a contract with RNOH. Please do let me know how you get on with both RNOH and DMO.
DMO do have some good postural products on offer. I too am working hard on my posture - Alexander Technique lessons have really helped me here (will start a separate post on that soon)
I am interested in the DMO E-Step https://www.dmorthotics.com/medical/products/e-step/ Only been tested on couple of subjects so far, so early days.
I have been following your recent threads on carbon fibre AFO - it sounds very exciting indeed. I should imagine carbon fibre would give you quite a springy step which would conserve energy, especially given carbon fibre is used in blades for paralympic sprinters. Keep us posted on this. What is Leeds Crispin Orthotics like? What made you choose them? Have you contacted Ottobock (Germany orientated firm but also global) they work with Carbon fibre AFOs
http://professionals.ottobockus.com/cps/rde/xchg/ob_us_en/hs.xsl/3306.html
We clearly do have similar interests here. Keep in touch
Best wishes
Stayce
Thanks for your comments, all most helpful, including your tips for getting to the RNOH.
I chose Crispin Orthotics as they are the only company in the UK that I'm aware of that make bespoke carbon fibre AFO's in house. I had the privilege of having a consultation with Mark Thuxter the owner and managing director a few weeks ago. So much work in progress!! I was extremely impressed with the scanning technology they are using to design, the AFO's, it certainly is a big step forward on the traditional plaster cast methods! He really knew his stuff, and the build quality was also a very high standard.
My feet are such that 'off the shelf' or 'generic' products simply do not work, fit, or are effective in providing enough support.
The e step product looks interesting, and I look forward to reading your post on Alexander Technique lessons and how this has helped you.
Noah
http://www.crispinorthotics.com/orthotics/products/quality-and-construction/
Hopefully this helps,
I guess AFO's made from carbon fibre, is not the right solution for everyone, and its about finding what works for an individual.
Georgie
I've had it explained to me recently by my gp that consultants, sometimes have better success when making referrals than gp 's do.
Just thought I'd mention it as you may get a better outcome if your young adult team refer you to a specialist consultant.
Maybe try and get referred to the RNOH.
All the very best
Noah
Thank you again for all your help. With this information, I shouldn't have as many problems as other people have because I know what to ask for.
Thank you again.
Georgie
Hi Georgie - Noah is right sometimes consultants can cut through some of the "red tape" that GPs can't. Perhaps also ask the Young Adult Service where the majority of their 25+ patients get referred to ( they must collect some transition service statistics) Do let us know how you get on. Best of luck
Thanks to both of you for a most interesting discussion
Best wishes
Stayce
CAD/CAM should create a product that is right first time, without the chance of a plaster mould changing shape etc!!
I have lost count of the number of times I have got all excited about an AFO fitting, waited ages for an appointment, taken time off work, to then get there, to find that something had gone wrong with the manufacturing process and it doesn't fit!
Hopefully in the future all NHS orthotic departments will have access to the latest technology, to allow them to be far more efficient and get the design and manufacturing right, first time, thus reducing the number of visits that a patient needs to make.
Noah
Thank you again to you both
Georgie
Thanks again for all your help guys, the detail you provided was excellent. I now know what colour to request if lycra splints are decided the right solution me!
Kind regards
Noah
Wishing you the best of luck for today's appointment, hope it all goes well for you. Let us know how you get on. Stayce
I hope your appointment goes well. I have blue lycra splints, and they work great for me. If you are able to have lycra splints it might be worth asking what colours they provide, and if a particular colour is better in the summer
Georgie
Thanks again for all your help and support guys, if it wasn't for this scope community discussion I wouldn't have known about lycra splints.
Noah
Georgie
You may of have already covered this, so apologies in advance, but JAB suggested that wearing them without soaks was most effective. Does that mean the lycra splints will need washing every night? I already struggle to keep athlete's foot at bay due to the plastic afo's getting very hot, and I take cleaning my feet very seriously as a preventive measure. Including drying them everyday with a hair dryer!
I wear my lycra splint without socks, but I have a soft toe portion added so it is a complete sock (most lycra socks will normally end at metatarsal heads) This is something I suggested to Georgie to further reduce heat and eliminate extra bulk of another Sock over the top. Don't worry if you think this is something that you might want - they can easily get this added after you have tested it.
The lycra splints are machine washable. I get away with washing them every two days. They dry pretty quickly, if leave them in airing cupboard over night they would be ready next morning.
Hope this helps, any further questions just drop me a line. Happy to help
Best wishes
Stayce
Georgie
Best wishes
Welcome Samantha106 to the Scope community. What type of splints do you wear? Feel free to ask any questions and we will do our best.
Enjoy the holiday season
Noah
Welcome Samantha. If you have any questions, I'll do my best to answer them, as I'm sure the others on this forum will too. I hope you enjoy Christmas and New Year.
Georgie
Merry Christmas guys and happy holidays
Best wishes
Hope all well
Noah - How are things with your lycra splints? How did you get on with your review?
Georgie - Did you manage to get new lycra splints set up through an adult service?
Best wishes
I haven't got any new lyrca splints yet, but if the Adult service haven't rang me to make an appointment by the end of next week I'm going to ring them and chase it up
I pick up new ones myself tomorrow
Best wishes
Hope you get them soon
Best wishes
https://www.dmorthotics.com/news/dmo-glove-assists-future-england-cp-football-star/
Sorry for taking an age to get back to you, I'm still getting use the new Forum layout, and life has been extremely busy recently.
Yes my review at the RNOH was a success, unfortunately we couldn't get the lyrica splints to work with both my feet. So it has been decided to design some new AFO's which hopefully will be less bulky and allow more function. I'm really impressed with the team at the RNOH, so professional with a very 'can do attitude'.
Even tho the lyrica splints have not worked for me, It has not been a waste of time, as I have learnt how a compression garment can improve function and sensory feedback, and I'm hopefully we still maybe able to get them working with both feet in the future.
In the mean time I have been looking for some regular lyrica compression socks that I could wear with my AFO's. Any suggestions on that front would be very welcome.
Hope your keeping well, did you get a hands free assessment? Have things improved with your RSI? I would be most interested to know how you have got on.
Georgie - Have you manged to make progress with you lyrica splints yet? I know how frustrating it can be to have to wait so long, my advice is keep emailing and calling the hospital and explain how important it is to you and how by not having them is effecting your quality of life. Try and build relationships with those that are in charge of making the appointments so they know exactly who you, and why you need that appointment so much, and they know you, not just your NHS number!
Noah
I've not heard anything more about my lycra splints, and the Young Adult Team have discharged me as I'm now 25. I'm trying at the moment to find the right place to phone about getting new lycra splints, but am not having much luck. I need to also find out how much they will cost to have made.
Georgie
Perhaps you could use the lycra splints just @ home for few hours as part of physio regime to help with lowering tone?
I wonder whether DMO could make you a thin Sock sleeve that you could wear in an AFO - worth asking @ RNOH or email DMO and enquire as I would think this would be quite a common request.
Is the main problem that you need more support than the DMO socks give you - if it is and you really want to be able to wear lycra splint I would have a look @ second skin (they make much sronger garments but they are extremely expensive)
In terms of compression socks I will do some further research, I have a pair of 1000 mile compression socks for long haul flights from physio room which would do a similar type job for you. http://www.physioroom.com/product/1000_Mile_Ultimate_Compression_Socks/2242/38252.html.
Georgie - Keep chasing them. May be worth getting in touch with patient liason service @ the hospital you were originally at - should be on their website. As in much earlier post a DMO lycra Sock would roughly cost €300 privately.
Hope this helps. Keep in touch, let us know how you get on.
Best wishes
I've left a message with the physio I was with until I reached 25. I'm hoping he will get back to me early next week. If he doesn't, I'll try him again on Wednesday. If I don't hear anything more after that I will try and get in touch with the hospital I was orignally with. I'm not in desperate need of new lycra splints just yet, but it would be good to know who I need to get in touch with when the time comes, and with what's happening in terms of me getting funding for them or having to pay myself privately.
Noah, I'm really sorry the lycra splints didn't work for you. I hope you find the right garments to support you in the very near future.
Georgie
Georgie - Your GP should be able to advise you on how you can get a referral to your hospital orthotic department, they can probably refer you directly, although sometimes you have be refereed via an consultant. I would recommend the RNOH in London, I have experience of several hospital orthotic departments and RHOH is the best I have been to so far. Very high standard of care, and staff that are focused on trying to achieve the very best possible outcomes.
Noah
I'm sorry the lycra splints didn't work well on your right foot. I hope you manage to find something more suitable. I've never had lycra splints from second skin before, so I'm not sure how good they are.
Georgie
Georgie - since you know DMO works for you, probably best see if you can get referred as Noah suggests unless your physio can help sort it out for you.
Best wishes
Georgie