Lycra Splints for people with cerebral palsy

Georgie

Hi 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

You have been a great help Geogie. Thank you. Maybe see if your young adult team can referr.you to a foot and ankle specialist and an orthotic department to try and ensure you can continue to get the lycra splints post 25.

Noah

Georgie

Thanks 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

Noah

Your welcome - that's what this community is all about, sharing ideas to hopefully enable individuals to have a better quality of life.

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

Another little tip.......make it clear to your consultant that you are happy to travel to a hospital in another area, and can they refer you to somewhere else if they don't have the right specialist locally. I travel 140 miles each way to see my consultant.

Noah

Georgie

Thank you. I hadn't thought about asking to travel somewhere else if they didn't have the right specialist

Thanks again

Georgie

Stayce

Hi All -

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 I would talk to your GP about how you could be referred ( so many rules these days I also get one set made privately because I like
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

Stayce

Just remembered this from Paralympics 2012 which I thought might be of interest regarding lycra splints https://www.dmorthotics.com/news/dm-orthotics-increase-performance-paralympian/

Georgie

Hi 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

Stayce

Hi Georgie - There should be a logo stitched on your lycra splints most likely at the top of your shin if it is either Second Skin or DMO? Or if your lycra splints were made years ago before they both started the branding, but that would be many years ago now - is the washing instruction label still visible this will have a manufacturer details printed either DMO limited or Second Skin most likely? Failing that I would bet that you have a Jobskin lycra splint as these don't carry a logo. Let us know.
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

Noah

That's a great idea, doing a rough guide to Orthotics in the UK. Let us know if you want any help with that.

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

I've looked on my lyrca splints and the logo DMO is on there

Georgie

Noah

Maybe it is worth contacting DMO just to find out what the costs would be, to supply you with another lyrca splint, as they should have all your details, so you probably wouldn't have to pay for the measuring, design and consultation stage.

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

Stayce

Hi Noah - That's great news about your appointment at RNOH. JAB is one of the two orthotic leads there. I see the other one Eileen. When I first started there I was under another orthotist who had undertaken a PhD in lycra splinting and CP. I learnt so much from him.

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

Stayce

Hi Georgie - Welcome to the DMO club What I meant is call or email DMO and explain your current situation and ask them which NHS hospitals do they supply to in your area, stressing you wish to continue to receive these on the NHS then you can inform your GP/ consultant of potentially some of the best options for your continuity of care. Hope it all works out. Best wishes Stayce

Noah

Hi 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

Stayce

Hi Noah - I understand exactly what you mean. I can't wear "off the peg" items either. All my orthotics are custom made, even the DMO is not the generic dorsiflexion sock. In-house facilities are key for me too, I always need so many adjustments made at fittings. Good news is RNOH have in-house work room. Is Crispin Orthotics using CADCAM technology?

Noah

Rather than trying to answer your question myself, I thought I would provide you with a couple of links http://www.crispinorthotics.com/carbon-fibre-orthotics-2/

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

Thank you Noah and Stayce for all your help. They are all really appreciated. I will be following up everything with the Young Adult Team in February, and with my GP. The Young Adult Team are providing me with new lyrca splints in February, so I will have a year or 2 to consult with my GP about the next way forward. However, I will be speaking to my GP sooner rather than later so that I know what my options are

Georgie

Noah

Your welcome 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